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Life experiences of young adults with a chronic illness: an analyses of Crohn’s disease and colitis Matthes, Glenn E. 1995

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L I F E EXPERIENCES OF YOUNG ADULTS WITH A CHRONIC ILLNESS: AN ANALYSES OF CROHN'S DISEASE AND COLITIS by  GLENN E. MATTHES  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS in  THE  FACULTY OF GRADUATE STUDIES  (Department  o f C o u n s e l l i n g Psychology)  We a c c e p t t h i s t h e s i s as conforming to the required standard  THE UNIVERSITY OF BRITISH COLUMBIA August,  19 95  (c) Glenn E. Matthes, 1995  In presenting this thesis in partial fulfilment  of the requirements for an advanced  degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department  or by his or her representatives.  It  is understood that  copying or  publication of this thesis for financial gain shall not be allowed without my written permission.  Department of CcvA,<;fit,  A, C  AyttfOco £J  The University of British Columbia Vancouver, Canada  Date  DE-6 (2/88)  I  }  /79<r  ABSTRACT What i s  the  experience  like  f o r young a d u l t s  living  with Crohn's disease or c o l i t i s ?  This question  provided  focus  narratives  10  for  interviews  participants  and w r i t t e n  i n a study  responses to,  e x p l o r i n g the  and management  l i v i n g w i t h an i l l n e s s .  of  each  the  perceptions  life  principles,  of,  experience  Q u a l i t a t i v e approaches  i n v o l v i n g phenomenological synopsis  of  of  to  guided the  individual participant's  of  research, study.  interview  n a r r a t i v e comprise a l a r g e p a r t of  the  thesis.  E i g h t themes,  established  interviews  written  narratives  a l l participants,  of  the  of  phenomenon.  (ii)  body o f  describe  the  A  and  written  from the  the  the and  essence  TABLE OF CONTENTS  Page ABSTRACT  (ii)  TABLE OF CONTENTS  (iii)  CHAPTER ONE: INTRODUCTION Psychological  Aspects  1 of  Crohn's Disease  and  Colitis  8  Factors Mediating Psychological Outline  of  Adjustment  12  Study  20  CHAPTER TWO: RESEARCH METHODS Limitations  and E v a l u a t i o n o f  My Own A s s u m p t i o n s : the  22 t h e Method  Presuppositions  Prior  26 to  Research  31  Participants  32  Procedures  33  Written Narratives  33  Interviews  35  Data A n a l y s i s  38  CHAPTER THREE: ANALYSIS AND RESULTS  47  Janet  48  Anita  56  William  61  Elaine  66  Amy  73  Teresa  75 (iii)  TABLE OF CONTENTS  (CONTINUED)  Helen...  80  Michael  86  Ted  91  Nancy  93  Reflections CHAPTER FOUR:  from t h e  GENERAL STRUCTURE  Summary o f  the  D i s c u s s i o n of CHAPTER F I V E :  Process Diary  102  Themes  103  General  Structure  104  DISCUSSION  Comparisons  to  99  148  Other L i t e r a t u r e .  151  Implications  for  Research.  165  Implications  for  Counselling  166  Personal  Meaning  REFERENCES  171  .  173  APPENDICES  183  Appendix A - Recruitment  Notice  Appendix B -  to  Orientation  the  184 Written  Narrative Appendix  C -  Introduction  Appendix  D -  Consent  Appendix  E -  Demographic  Appendix  F -  Sample  186 to  the  Interview  Form  188 191  Questionnaire  Interview Questions  (iv)  193 195  ACKNOWLEDGEMENTS  I would like to thank the following people.  To my participants for generously volunteering their time and for openly sharing their stories.  To my advisor, Richard Young, for his knowledge and guidance.  To my committee members, Judith Daniluk and Judy Lynam for their feedback that helped me to refine my work.  To my family for their encouragement throughout my academic career.  To my partner Lori for her love and endless support. Together we share the joy of this achievement.  (v)  CHAPTER ONE Introduction  The p u r p o s e o f adults  make s e n s e o f  colitis  s t u d y was t o  the  influences  h a v e h a d on t h e i r  young a d u l t s / of  the  of  this  life  adults  perceptions  experience  study  is  of  lives. of,  the  colitis,  how y o u n g  Crohn's disease  responses t o ,  and  management  The m a i n t h r u s t  of  this  The  experience  from t h e i r  of  value  young  own  s t u d y was t o  chronic illness  or  investigated  l i v i n g w i t h an i l l n e s s .  i n understanding the  understanding of  particular  examine  This project  coping with chronic i l l n e s s  perspective. to  this  contribute  variables,  in  those involved with having Crohn's disease  a n d how t h e s e v a r i a b l e s  are experienced  or  by y o u n g  adults. C r o h n ' s d i s e a s e and c o l i t i s heading of illnesses inner  I n f l a m m a t o r y Bowel D i s e a s e . that  l i n i n g of  known a s  the  affect the  Ileitis)  penetrates the i n the  small  the  They a r e b o t h  chronic  C o l i t i s attacks  the  l a r g e bowel w h i l e  Crohn's disease  (also  c h a r a c t e r i z e d by i n f l a m m a t i o n w h i c h  entire  thickness  intestinal  area.  of  the  bowel w a l l ,  I t may a t t a c k  s y s t e m f r o m mouth t o  at  anus  usually  any p o i n t  follows:  weight l o s s ;  d)  a)  I n f l a m m a t o r y Bowel  b l o o d y d i a r r h e a ; b)  fever;  e)  fatigue;  Disease  abdominal p a i n ;  and f)  of  (Steinhausen  1982).  The s i g n s and symptoms o f a r e as  the  intestines.  is  gastrointestinal  & Kies,  are grouped under  malnutrition.  c)  Onset o f t e n physical  occurs during adolescence,  and e m o t i o n a l  i m p a c t c a n be d e v a s t a t i n g  and p h y s i c a l growth a r e o f t e n 1982).  The cause o f  who s u f f e r  (Salazopyrin,  involve  and d i f f e r e n t  where a p i e c e ileostomies, intestine i n the  special  bowel). face  body's  sexual  for  & Kies,  different  surgeries  & Kies,  the present  effective  I m u r a n , an  time,  all  1982).  types  of  The  drugs  immunosuppressive; steroid  (bowel  based  resections,  s u r g i c a l l y removed; fluid  f r o n t of the  a bag w h i c h i s  adhesives; but the  wastes from t h e  abdomen,  attached to  or colostomies,  and t h e the  smaller  frequent  which i s  s u r g i c a l procedure involves  Colitis  h o s p i t a l i z a t i o n because (i.e.  s i m i l a r to the  at  each year  (Asakura,  Ando,  110,000.  Takata,  large  may  also  consequences  d i s c o v e r e d and d i a g n o s e d  i n 1932.  estimated  the  an  of  fistulas).  was f i r s t  Crohn's disease  of  material  s k i n by means  Persons with Crohn's disease or c o l i t i s  inflammation  Hire,  is  as  are emptied through a s u r g i c a l l y p r e p a r e d opening  into  ileostomy  several  types of  where t h e  at  and v a r i o u s t y p e s o f  intestine  s k i n on t h e  collects of  of  is,  is  the  (Steinhausen  (Steinhausen  a sulpha drug;  5-Aminosalicylic acid, drugs)  treatment  f r o m them  primary treatments  delayed  these i l l n e s s e s  unknown and no s p e c i f i c people  a t i m e when  Prevalence figures  i n 1905  f o r Canada  T w o - t h o u s a n d new c a s e s a r e  Tsuchiya,  Aiso,  & Sekiguchi,  Watanabe,  i n ten  are  diagnosed  Kobayashi,  1982).  Persons with Crohn's disease or c o l i t i s a p p r o x i m a t e l y one c h a n c e  and  have  of having other  cases  of  these  illnesses  among t h e i r  may s k i p g e n e r a t i o n s (Asakura et  al.,  blood r e l a t i v e s .  adults not  of  that  1982).  Past  research  (Ben-Sira,  These  young a d u l t s  hold true  illnesses  15 and 29 people  fewer  chances  (Asakura et their  disease.  this  al.,  frequently 1982).  doctors  older  ages  of  c a r d i o v a s c u l a r and r e s p i r a t o r y d i s e a s e s  of  all  from a d i g e s t i v e  beds t h a n a l l p e o p l e  does  colitis.  between t h e  People with g a s t r o i n t e s t i n a l  o c c u p y more h o s p i t a l  has disease  than  Thirty percent  suffer  1982)  finding  for Crohn's disease or  s t r i k e most  visiting  related  have  generations  and c h r o n i c  b e i n g c h r o n i c a l l y i l l . However,  appear to  conditions  o r may appear., i n s u c c e s s i v e  f o u n d a n e g a t i v e c o r r e l a t i o n between age indicating  The  tract  diseases  with  (Asakura et  al,  1982). I n f l a m m a t o r y Bowel D i s e a s e emotional been  disorder.  found to  restricted 1982).  investigated  past,  i l l n e s s e s were c a u s e d  Lyketsos, Kunsebeck, the  last  from the  by e m o t i o n a l  development  of  and a r e  not  that  1966;  which i s  these  been two  1985).  disposed  Crohn's disease or c o l i t i s  Richardson, &  Freyberger,  has been r e a l i z e d t h a t  personality  have  al.,  psychological  Wellmann, & A v e n a r i u s ,  two d e c a d e s i t  an not  Gerolymatos,  Castelnuova-Tedesco,  Lempa,  stereotypical  and  be  (Asakura et  perspective  (Arapakis, Lyketsos,  1986;  types  to  have  C r o h n ' s d i s e a s e and c o l i t i s  largely  disturbances  not  by s t r e s s o r a n x i e t y  certain personality  In the  believed  C r o h n ' s d i s e a s e and c o l i t i s  be c a u s e d  to  is  to  However, there  is  in no  the  (Arapakis et  al.,  198 6;  Mendeloff,  Monk,  Mendeloff,.Siegel, psychological centered the  (Arapakis et  many a s s u m p t i o n s  al.,  to  the  1986;  1985).  colitis in  factors  have never  as  i n the  syndrome,  l a b e l has been  to  control  a cause of  with c o l i t i s  be more a n x i o u s  group.  However,  of  is  of  with c o l i t i s  illness  account  how i l l n e s s  individual  Arapakis et  p i c t u r e of  Arapakis et  al.  be  less  than  does not  interact  to  psychosocial (1986)  the behaviour  the  and  that  depression  take  in creating  and d e p r e s s i o n .  to  toward  The f i n d i n g  how c h r o n i c i l l n e s s  al.  (1986)  bowel  and blame  with c o l i t i s  because i t  symptoms  with a person's  important.  to  and  h a v e more t e n d e n c i e s  were f o u n d .  with higher anxiety  more h o l i s t i c interact  Crohn's disease  s c o r e d h i g h e r on a n x i e t y  limited usefulness  recent  chronic  no c h a r a c t e r i s t i c modes o f  development  and  between  and more d e p r e s s e d  p r e d i s p o s i n g people their  these  and i r r i t a b l e  c o n t r o l group,  and t h o u g h t  people  links  f r u s t r a t i o n by d i r e c t i n g a n g e r  themselves,  for  discredited.  found i n d i v i d u a l s i n both groups  dominant than the react  along with  area of  been e s t a b l i s h e d .  comparing people  causes  Castelnuova-Tedesco,  and o v e r - g e n e r a l i z a t i o n s  psychogenic  has  With v e r y mixed r e s u l t s  T h o u g h many a t t e m p t s were made, psychogenic  Monk,  Previous  f i n d psychogenic  al.,  i n medical research  illnesses,  1969).  1970;  r e s e a r c h on C r o h n ' s d i s e a s e and c o l i t i s  Freyberger et  advances  & Lilienfeld,  & Lilienfeld,  around attempting  illnesses  1966;  Siegal,  into an  Therefore, symptoms  development  over-generalized  is  very  their  a  findings people  by i m p l y i n g t h a t  with c o l i t i s  psychosomatic illness.  the  f i n d i n g of  may r e f l e c t  factor  which l e d t o  activation  the  symptoms  They a l s o found a h i g h l e v e l  c h a r a c t e r i z e d by t h e directing focused  anger  symptoms  tendency  often  thought  of  d a t a do n o t  p r e d i c t e d the  these groups.  c l a r i f y whether  dynamics u n d e r l y i n g the reactive  to  the  (Arapakis et  al.,  Crohn's disease,  al.  However,  they  on t h e  mundane.  traits  caused  shame,  neurotic  elevated  anxiety  admit t h a t  the  or  primary  and  their  with the  commenting on some  people  with the  and c o g n i t i v e  with the  illness  same  if  it  is  disease  emotions  disease.  these t r a i t s  illness  onset or i f  processes.  They  who h a v e  they  They  No r e s e a r c h was before  only appeared  been found  relatively  concluded that  were p r e v a l e n t  with show  and t h e i r t h i n k i n g t e n d e d  The a u t h o r s  whether  previous  disease  their research projects.  w i t h C r o h n ' s d i s e a s e had  the  of  or  with regards to people  suggested that  undifferentiated  internally  guilt  associated  impact of  (1985),  four people  people  the  primary disease process,  findings  w i t h i n one o f  the  the as  of  a d i s r u p t i o n i n both a f f e c t i v e  treated  of  f r u s t r a t i o n by  presence  is  a  1986).  psycho-therapeutic  to  to  findings  it  psychosocial  Freyberger et  also refer  react  of  in  intropunitiveness,  being experienced  c o n f i r m e d by t h e i r  depression  to  of  and blame t o w a r d o n e s e l f ,  emotions  which they  that  the  low d o m i n a n c e  these  to  personality  conducted to the  after.  dwell  chronic  see  Monk e t  al.  (1969),  i n an e p i d e m i o l o g i c a l  no i m p o r t a n t p e r s o n a l i t y d i f f e r e n c e s  between p e o p l e  colitis  and a c o n t r o l g r o u p .  colitis  were  general  p o p u l a t i o n and w i t h a g r o u p o f p e o p l e  "irritable  interviewed  found  with  Individuals hospitalized  with  and compared w i t h a s a m p l e o f  c o l o n , " who were  Individuals with c o l i t i s groups.  study,  interviewed  with  i n the  d i d not d i f f e r  same  from t h e  The l a r g e p r o p o r t i o n o f J e w i s h p e o p l e  g r o u p was t h e most d i s t i n c t i v e  the  way.  comparison  i n the  c h a r a c t e r i s t i c of  colitis  this  group.  The h i g h e r number o f J e w i s h p e o p l e m i g h t be a c c o u n t e d f o r genetic  factors.  findings.  Esler  with c o l i t i s  Mendeloff et  al.  (1970)  and G o u l s t o n (1973)  d i d not d i f f e r  from a c o n t r o l group of  also  by  replicated  these  found t h a t  people  along p e r s o n a l i t y  people with general  dimensions  medical  problems. Daniels, (1962)  O'Connor,  treated  Karush,  57 p e o p l e  Moses,  with C o l i t i s with  T h e y c o m p a r e d them w i t h 138 p e o p l e r e c e i v i n g psychotherapy. family  and c a r e e r ,  generally of  higher  worsening of to  study, the  evaluations  treatment  of  had demonstrated  psychotherapy.  with c o l i t i s  not adjustment  t h o s e who r e c e i v e d p s y c h o t h e r a p y scores.  c o r r e l a t e with the  a c t u a l b o d i l y symptoms.  be p s y c h o l o g i c a l  and L e p o r e  When compared on l i f e  i n adjustment  s e s s i o n s d i d not  Flood,  in nature, of  the  people  However,  not p h y s i c a l .  with c o l i t i s  favourable effects  were number  improvement o r  The c h a n g e s  effectiveness  the  in  of  In  were  found  another  psychotherapy  showed t h a t emotionally,  in  counselling but  once  again,  not p h y s i c a l l y ,  changed h a r d l y a t Flood,  Karush,  ileostomy change  Moses,  for r e l i e f  in their  (Druss,  all  i n any r e s p e c t & Stern, of  were p s y c h o s o m a t i c  assumed t o  psychotherapy  illnesses,  Crohn's  some  methods  fell  their participants. samples  and 20 s o - c a l l e d  recognize  of  content  be p s y c h o s o m a t i c  that  population  were  Taylor  obtained  psychosomatic cards,  analysis.  The i n d i v i d u a l s  10 p e o p l e  with  with c o l i t i s .  generalizations  disease  studies  these chronic i l l n e s s e s  s t u d i e d monodic speech  d i s e a s e and 10 p e o p l e  It  appears  were made t o  a  Crohn's important  Other aspects of  studied:  c h i l d r e n who h a d u l c e r a t i v e on t h e  Inventories  Bell  colitis,  A r e c o g n i t i o n of  no d i f f e r e n c e the  studied  and m a t c h e d  between t h e s e  need f o r d i f f e r e n t  understand these  a n d L y o n s (1988)  (1973)  colitis 25  controls.  A d j u s t m e n t and Maslow S e c u r i t y - I n s e c u r i t y  revealed  approaches to  be  C r o h n ' s d i s e a s e and  F i s h i e r and F o g e l  to  psychosomatic  f r o m a s a m p l e t h a t h a s been shown t o n o t  psychosomatic.  Scores  of  an i m p r o v e d  u s i n g s e l e c t e d Thematic A p p e r c e p t i o n T e s t  and d i f f e r e n t  have been  underwent  symptoms showed  l a b e l when s e l e c t i n g (1985)  Daniels,  T h o s e who  were m i x e d on w h e t h e r  f r o m 20 p s y c h o - n e u r o t i c persons,  (O'Connor,  1972).  a u t o m a t i c a l l y assumed t h a t  and Doody  a c o n t r o l group which  1964).  colitis  & Stern,  Although r e s u l t s  under t h i s  to  body image as a r e s u l t  O'Connor,  and c o l i t i s  in contrast  illnesses  s t u d y on c o l i t i s .  implemented r e s e a r c h p r a c t i c e s  These  groups.  research  resulted  in Alberts  researchers  w i t h a framework o f  trying  to  find  helpful  disease. illness the  coping strategies  The r e l a t i o n s h i p quality,  eight  of  treatment,  coping styles  for  individuals with  illness  variables  lifestyle  (demographic,  and i n t e r p e r s o n a l )  a s m e a s u r e d by t h e  important from t h e al.  f o r the  i n managing t h e results  (1970)  is  the  identifying  condition.  et  personality  al.  is  coping  findings  (1970),  that  representative  The p a r t i c i p a n t s d i d n o t d e m o n s t r a t e  character p r o f i l e . treatment  The p o s s i b i l i t y  could result  in 38  adults  styles  Another inference  support given  and M e n d e l o f f ,  characteristic colitis.  purpose of  that  to  Millon  B e h a v i o u r a l H e a l t h I n v e n t o r y were i n v e s t i g a t e d with c o l i t i s  this  drawn  o f Monk,  et  no of  people  with  a particular  psychological  i n a more a d a p t i v e  coping s t y l e  was  discussed. P s y c h o l o g i c a l Aspects Any s e v e r e (Pless  illness  & Pinkerton,  of  C r o h n ' s D i s e a s e and C o l i t i s  i n a young a d u l t r e p r e s e n t s  1975).  The n a t u r e and e x t e n t  disruption  a c c o m p a n y i n g an i l l n e s s  to  at which i t  the  age  restrictions functioning Chronic  occurs.  i m p o s e d by i t s  is  problems.  The y o u n g a d u l t ' s  number o f  factors course  that, of  Some i l l n e s s e s or  management  frequently  isolation  an  often  E i t h e r the  and d i s r u p t d e v e l o p m e n t  illness  during the  will  crisis  of  vary according  illness  itself  may i n t e r f e r e  or  with  and n o r m a l l i v i n g .  associated  adjustment  separately  a  with  ongoing  w i l l be a f f e c t e d  or together,  by a  may o c c u r  illness.  require periods  from f a m i l i a r people  of  restricted  mobility  and s u r r o u n d i n g s .  Steinhauer, findings  Mushin,  with regards to people  illnesses, illness  and R a e - G r a n t  suggested that  of  period that  the  may be r e q u i r e d debilitating the  especially  progression,  is  f o r c e d by t h e  frequently others  If  the  elicits  (e.g.,  illnesses such as  is  during the  poorer the  person.  is  active  a great to  the  relentless  one o f  restrictions  al.,  the the  when  clearly visible  reactions  of  disgust  and  or aversion  from  the  continued  others  may p r o v e  (Steinhauer  et  with  al., and its  1982).  a Some  restrictions, frequent  and r e g u l a r  testing  T h e s e p r o g r a m s o f management  c a n c a u s e a n g e r and f r u s t r a t i o n .  they  hopes and  is  1982).  illness,  for  depression  s c a l e down t h e i r  of  more the  is  sense of  dietary restrictions, et  the  chronic  C r o h n ' s d i s e a s e and c o l i t i s  (Steinhauer  assistance  prognosis,  illness  person  illness  initial  i n young a d u l t h o o d  discomfort  this an  A serious  r e q u i r e a p r o g r a m o f management  medications,  coping,  T h i s may l e a d t o  s c a r r i n g from s u r g e r i e s ) ,  blow t o  of  Generally speaking,  and t h e  illness  c o n f r o n t a t i o n with the serious  a means  bound t o p r o d u c e t e r r i b l e s t r e s s illness  chronic  1982).  it  c l i n i c a l course  experience  expectations.  al.,  1979).  illness  the  the  person w i l l are  as  h i g h and p s y c h o l o g i c a l  s t r e s s on t h e if  If  is  (Geist,  the  et  suggest that  stress  of  expectations regarding the  (Steinhauer  Recent w r i t e r s  person.  fantasy  unrealistic  a n d management  greater  with a v a r i e t y  b e i n g e n h a n c e d by i s o l a t i o n .  escalation  commenting on some  a young a d u l t w i t h a c h r o n i c  may w i t h d r a w i n t o  tendency  (1982)  and  Upward m o b i l i t y chronic  illness  i n work c a n be s e r i o u s l y  (Steinhauer  faced with having to illness  a c t s up.  Terry,  the  For people  this  decision  of  denial ability crisis  to  illness.  face  illness  never  of  of  of  the  at  their  need t h e  (Pawl,  To  expenses  relieve  medications.  probably never time.  interferes  completely  Persistent  with the  thus  the  person's  perpetuating  the  illness. coming t o  Some p e o p l e  terms w i t h  learn to life.  may be d o m i n a t e d by  (Steinhauer  suffered  these  react with denial to  illness,  disease.  life  hidden  dangerous  consequences f o r t h e i r  depression  Persistent  may make t h e  a stage i n t h e i r  their  grief  often  (e.g.,  l i m i t e d income,  any s i n g l e  illness  and t h e i r  psychological  experienced  is  and i t s  do s o ,  unresolved half  they  p r e c i p i t a t e d by t h e  implications  is  (Kalnins, C h u r c h i l l , &  Denial is  not  the  additional pressure.  deal with t h e i r  Depression  the  with  a l l people  certainly  i n the  work when  an i l l n e s s ,  etc.)  people  denying that  their  abandoned,  of  pressure,  To some e x t e n t , shock o f  A person  p e r f o r m a n c e a t work may be  c o s t s of  diets,  may be a m a j o r s o u r c e some o f  of  c o s t must be c o n s i d e r e d  special  198 0 ) .  off  1982).  illness.  In e s t i m a t i n g dollars-and-cents  al.,  time  Also there  h i n d e r e d by t h e i r  medications,  take  et  l i m i t e d by a  et  al.,  from p a i n f u l  the  accept  Others their  1982).  illnesses  Perhaps is  1979).  abdominal p a i n i s  a symptom  often  by t h o s e w i t h C r o h n ' s d i s e a s e o r c o l i t i s .  When  faced with continual pain, mind can f a l t e r . to  respond to  Those a f f l i c t e d  their  on i n t e r p e r s o n a l Relationships  e v e n t h e most h e a r t y  environment.  relationships  t h e n become  Routine a c t i v i t i e s  lose  some o f  and  stable  their  ability  They may c o n c e n t r a t e  t h a n on t h e  pain  less  itself.  i r r i t a t i n g rather than  joyful.  become h a r d e r and may be n e g l e c t e d  (Pawl,  1979). In a c h r o n i c i l l n e s s , overwhelming  f o r whatever  may i n i t i a l l y grief  is  where  a p a i n f u l process  reason,  lose her or h i s  drawn-out over days,  the person  enthusiasm  for  i r r i t a b l e and  depressed  life's  the  responsibilities components attention  of  p o i n t where  may be d e s e r t e d .  the  person's  therapeutically  1979) . A y o u n g a d u l t ' s pain  is  perceived  Pain caused irritability.  If  ultimately  wears  Persons  as  the  burden.  and  to pain v a r i e s  young a d u l t ' s  of  guilt,  down  illness  (Pawl,  w i t h how  that  pressures  and i n a d e q u a c y l o n g enough et  the  it  1982).  are  likely  T h i s c a n make them  dealing with  in  al.,  with Crohn's disease or c o l i t i s  T h e y may f i n d  may p r o d u c e  additional  (Steinhauer  be a n e m i c and p r o t e i n d e f i c i e n t . and l i s t l e s s .  eventually  organic portion  b a d enough and l a s t s  people  sufferer  1973).  in feelings  pain is  the  the  The p s y c h o l o g i c a l  T h i s t r a i t may p r e s e n t  and may r e s u l t person.  by t h e  As  p a i n p r o b l e m n e e d a s much  response  (Nover,  goals  afflicted  life.  weeks o r m o n t h s ,  may become w i t h d r a w n , moody, to  so  becomes  life  tasks  to  tired a  huge  These diet  to  illnesses  the  on l i q u i d  point  diets  often  of  cause a person to  avoiding s o l i d  o r on i n t r a v e n o u s  with depression.  foods.  et  feeding  c a n be  D e p r e s s i o n c a n be a n o t h e r  Diarrhea diarrhea  is  al., is  it  often  continues  hinders proper sleep patterns. person's et  al.,  emotional  forms o f  these diseases.  night  and  Without s u f f i c i e n t  sleep  a  a l e r t n e s s and b e h a v i o u r  affected  particular  have  (Steinhauer  (e.g.  et  c a n become  difficulties  i n d i v i d u a l to  prolonged periods surgery  it  of  1982).  depressed. Crohn's disease  which can  f o r young a d u l t s .  treatments  al.,  hospitalization,  surgery,  young  steroids).  (Steinhauer  by s t e r o i d s  and r e p e a t e d  the  the  occur with c e r t a i n drug  can r e q u i r e frequent  procedures,  for  When  through the  Along with various drug treatments,  requires  illness  m e d i c a t i o n may a f f e c t  and i r r i t a b i l i t y may r e s u l t  colitis  symptom  1982).  O c c a s i o n a l l y headaches  Persons  associated  a l e r t n e s s and b e h a v i o u r c a n be a f f e c t e d  Certain adult's  periods  1982).  a common symptom o f  severe  their  Prolonged  commonly f o u n d among t h o s e w i t h a c h r o n i c (Steinhauer  restrict  painful present  Hospitalization  be away f r o m f a m i l y and  time.  friends  F o r t h e p e r s o n who h a s  c a n be d e v a s t a t i n g  and  (Steinhauer  et  to  al.,  1982) . Factors Mediating Psychological A s t r o n g network of physical  and e m o t i o n a l  Adjustment  f a m i l y and f r i e n d s  burden of  day-to-day  may e a s e  the  living for  the  chronically management  i l l person of  the  (Steinhauer  emotional  et  al.,  aspects of  Successful  chronic i l l n e s s  on a r e c o g n i t i o n t h a t  major  i m p l i c a t i o n s on m e n t a l h e a l t h and r e l a t i o n s h i p s .  they w i l l deal  have r e s o l v e d t h e i r e m o t i o n a l  with the  additional strains  have r e c e i v e d  a clear  diagnosis  can they  practical  p l a n n i n g and l a t e r w i t h t h e  begin to deal  important task  of  (Steinhauer  al.,  et  emotionally  disruption that minimize the  effects  and a d a p t i o n o f  1982) . P e o p l e may need h o n e s t progress,  information. It and d i r e c t ,  excessive pessimism. Ongoing c o n t a c t professionals illness  better to  lives.  definitive necessary  a r d u o u s b u t no the  less  inevitable  the  potential  for  c a n p r o d u c e c a n do much t o and t o  aid in  the person  the  (Steinhauer  and r e p e a t e d  and p r o g n o s i s ,  et  al.,  explanations and t i m e  to  of  digest  may p r o v e h e l p f u l f o r p r o f e s s i o n a l s  to  a v o i d i n g unwarranted optimism or T i m i n g may a l s o  be  important.  with the person allows  explore the  person's  and h e l p d e a l w i t h e m o t i o n a l  a s k i n g how t h e the  to  their  with the  accepting  a chronic illness  diagnosis,  and  first  who r e c o g n i z e s  destructive  reintegration  be s i m p l e  the  1982).  The p r o f e s s i o n a l  this  The  i m p o s e d by  w i t h m i n i m a l damage and d i s r u p t i o n t o  O n l y when p e o p l e  their  issues,  have  be a b l e t o meet t h e i r p h y s i c a l and n e e d s a n d  successfully  illness  i n a person w i l l  is  based  more p e o p l e  illness  1982).  understanding of reactions  person sees her or h i m s e l f  p e r s o n c a n be e n c o u r a g e d t o  raise  various  to  and t h e  concerns.  it.  the By  illness,  Those  people  who u n d e r s t a n d and c a n p e r c e i v e disease,  its  symptoms and p r o g n o s i s ,  these d i r e c t l y w i l l  greatly  i n c r e a s i n g number o f most p a i n f u l study  and who c a n  safeguard t h e i r  feelings  r e l a t e d to  illness  about t h e i r  illness  were t h e  generally  l e s s t h r e a t e n i n g than t h a t which i s  discussed  (Steinhauer  encouragement  What i s  et to  al.,  even  the  1979).  One  t h o s e who  openly acknowledged  1982).  An  o n e s who were  (Geist,  in  1979).  of  (Geist,  w i t h c a n c e r showed t h a t  least  is  known b u t  Some p e o p l e  express f e e l i n g s  the  discuss  adjustment.  depressed  active  nature of  authors support d i s c u s s i o n  i n v o l v i n g people  t a l k e d most  a c c u r a t e l y the  that  not  may n e e d  have been  held  b u t a r e t e a r i n g them a p a r t . Throughout h o s p i t a l i z a t i o n ,  encouraged to visits illness  keep  o r by m a i l .  i n contact  may c o n t r i b u t e t o  f o r the  person  with friends,  an a l i e n a t i o n  can slow the  emotionally  to  their  et  a b i l i t y of  illness  and w e i g h t h e  facts  reassurance  and e n c o u r a g e m e n t  (Steinhauer  et  helpful  to  the  1982).  person  through of  from p e e r s  al.,  that  1982).  the  who, of  Alienation  person to  adjust  situation.  In making i m p o r t a n t d e c i s i o n s ,  al.,  either  c o u l d be a m a j o r s o u r c e  (Steinhauer  from o t h e r s  recognize  p e r s o n s h o u l d be .  E m b a r r a s s m e n t o r shame b e c a u s e  g i v e n p r o p e r encouragement, support  the  of  the  some p e o p l e  need h e l p  situation,  and  once a d e c i s i o n h a s  A counsellor  (Steinhauer  et  c a n be  al.,  to  b e e n made  extremely  1982).  If  must c o n t i n u e w i t h s t e r o i d t h e r a p y and p s y c h o l o g i c a l  a  person  distress  is  a problem,  professional  and f i n d  involving surgery  a balance  u n d u l y and y e t preparation.  still  offering  surgery  should begin well  possible.  ahead o f  is  is  important  to  person  s h o u l d be o f f e r e d preparation  the  event  to  for  in order  often  attempt  and b e h a v i o u r  More c u r r e n t t h e o r i e s b e h a v i o u r as  goal  appraises  a situation  challenge.  of  (Ray, stress  when t h e  describe  adjust  Lindop,  to  to  intrapsychic  & Gibson,  to  individual  the  stress.  1982).  and c o p i n g d e s c r i b e  as p o s i n g t h r e a t ,  coping  stress.  Coping  cognitively  harm,  loss  or  A p p r o p r i a t e l y s e l e c t e d c o p i n g s t r a t e g i e s may the  i n d i v i d u a l under s t r e s s  breakdown o r maladjustment 1987) . L a z a r u s (1981)  (Felton,  proposes  c o p i n g behaviours which people personal  to  d i r e c t e d and r e s p o n s i v e  presumably e l i c i t e d  buffer  been u s e d t o  s e e n a s h a v i n g two m a i n c o m p o n e n t s ,  mechanisms,  characteristics  environment,  a n d , most  s t r e s s w i t h which they with  it  cope.  p r o c e s s e s by w h i c h p e o p l e  to  seek  psychological  The p s y c h o l o g i c a l  The t e r m c o p i n g h a s  is  some  S u p p o r t and encouragement  if  Coping  to  between n o t a l a r m i n g t h e  people,  better  may be n e c e s s a r y  counselling.  In circumstances try  it  i n the  past.  t h o s e s e e n as  that use  importantly,  from e m o t i o n a l  Revenson, the  &Hinrichsen,  p a r t i c u l a r kinds  a r e d e t e r m i n e d by  and t h o s e o f  their  by t h e  Health-related stressors, (i.e.,  of  both  social nature of  a r e d e a l i n g and w h i c h t h e y  r e q u i r i n g acceptance  help  the  have  dealt  particularly chronic  illnesses), higher  were f o u n d by L a z a r u s t o  d i r e c t e d at  p r o m p t e d by t h e strategies  the  reducing the  a l t e r i n g the  D e p e n d i n g on t h e the  illness  coping strategies  chronic disease to  include:  information  seeking,  reminiscence  about  illness-related  from o t h e r s  Worden,  1976).  the  r e s e a r c h has  denial,  selective  variable,  (Cohen & L a z a r u s ,  types of  During the  developmental high is  school  social, take  age  span,  transition.  as  employed  a dynamic  to  by  is  interaction  target  education  f a c e d w i t h many  or the must  along with the home.  on new a c a d e m i c o r work p r e s s u r e s ,  to  of  The c h a n g e  Young a d u l t s  support of  has  age w i t h r e g a r d s  a person  and s t a t u s o f t e n  and e m o t i o n a l  valuable  psychology  transitions.  into post-secondary  roles  seeking  Weisman &  have n o t been t h e  t a s k s and l i f e  one m a j o r l i f e  adolescent  life  avoidance,  illness.  attributable  C r o h n ' s d i s e a s e and c o l i t i s research.  and  1979;  from  specific  coping s t r a t e g i e s  importance of  differences  a n d on  ignoring,  learning  A l t h o u g h contemporary developmental the  stress  found  in activity,  blaming others  i n d i v i d u a l s when f a c e d w i t h  highlighted  the  coping used  These s t u d i e s have p r o v i d e d  of  than  individuals suffering  taking refuge  procedures,  of  (i.e.  distress  rather  of  f o r m e r good t i m e s ,  comfort  descriptions  of  coping  source  definition studied,  significantly  emotional  problematic s i t u a t i o n ) ,  d i r e c t e d at  nature of  typical  a  l i k e l i h o o d t o prompt e m o t i o n - f o c u s e d  strategies  itself.  have  work leave  force behind  physical,  In exchange, personal  from  they  responsibilities, 1964)  as w e l l  and s o c i a l  as  relationships  Bronfenbrenner development  (1979)  own s t r e n g t h  individuality  has  adjustment  that  to  their  achieve  present  The p r e s e n t  of  development  for the  illness.  each t r a n s i t i o n  young a d u l t s '  an  significant of  o r work,  (Compas, D a v i s ,  frequently  A chronic illness  exceed a young a d u l t ' s  individual, (Ben-Sira,  resources.  experiences  with  a number o f to  college, to  living  1985). a period  of  c h a n g e s and  may make demands deal with  bounds o f  that a  a normal  may be a f a c t o r w h i c h i m p o s e s upon an  demands w h i c h a r e p e r c e i v e d 1982).  young  experiences  Having to  may by f a r e x c e e d t h e it  the  p e r i o d of  d e s c r i b e d as  occur.  -  stress  especially  and F o r s y t h ,  transitions  life  the  concern i n  and f r o m l i v i n g w i t h p a r e n t s  d u r i n g which dramatic l i f e  of  her  thus  mediate  life  life  development  course  of  Young a d u l t h o o d i n v o l v e s  illness  and  nature of  The f a c t o r  investigation  Young a d u l t h o o d i s  chronic  progressively  i n c l u d i n g t h o s e from h i g h s c h o o l  independently  during  The i n d i v i d u a l b r i n g s  Young a d u l t h o o d i s  and p o t e n t i a l l y  university,  transitions  1963) .  illness.  interesting  transitions,  Newcomb,  r e s e a r c h was c o n c e r n e d w i t h t h e s e  experiences.  chronic  the  1968;  (Erikson,  i m p a c t on t h e  own a d a p t i o n .  a chronic  intimacy  Individuals actively  r e s e a r c h was t h a t  adapting to  adult  and s t y l e t o  made.  (Astin,  adaption to  influence.  an a c t i v e  is  of  viewed  i n v o l v i n g the  as  broadening spheres of or h i s  networks  as  overwhelming .  a  The p o t e n t i a l l y illness  -  namely,  the  and p a r t i c u l a r l y t h e continually  unpredictable  have  continuing  the  capacity their  which are often  fear of  of  chronic  illness  on p s y c h o l o g i c a l  (Felton  et  1987).  The v a l u e understand the chronic year,  is  quite  field  lives  the  (Ben-Sira,  proposed  experience  illness.  it  health  of  of  probable that  To u n d e r s t a n d how. one  to  live  research.  need t o  first  in relation  If  efforts to  illness. result  we a r e t o to  c a n be  coping  of  the of  profound  to  with  to  their  looking at  an  chronic in  health experience  disease. design  of  choice  for  young a d u l t s ' then  there  unfolding effects  chronic i l l n e s s  findings.  the  c a n be more h e l p f u l  s u p p o r t and h e l p  the  each  come a c r o s s  deal with chronic i l l n e s s ,  in irrelevant  within  these  has  stigma  some o f  u n d e r s t a n d how p e o p l e  u n d e r s t a n d more f u l l y However,  new  burdens  in learning  will  w i t h one  Q u a l i t a t i v e methods were t h e  need  is  i n d i v i d u a l s with a chronic i l l n e s s ,  lives  impose  The i m p a c t  professionals  occupations  illnesses.  their  of  1982).  young a d u l t s  attempting  their  the  W i t h 2 , 0 0 0 new c a s e s b e i n g d i a g n o s e d  and r e l a t e d  professionals  prognosis,  These  adjustment  study  individual  aiding  its  a c c o m p a n i e d by  depriving individuals  over  chronic  The i n d i v i d u a l  further episodes.  control  al.,  of  o f more o c c u r r e n c e s  c h r o n i c a l l y i l l person.  cope w i t h burdens,  and t h e  uncertainty  of  accompanying h a z a r d o f  development  demands upon t h e to  damaging c h a r a c t e r i s t i c s  this in is  a  of  i n a vacuum may  The p u r p o s e o f the  experiences  chronic  illness,  to  as m e a n i n g f u l l y  p r o c e d u r e s were c h o s e n are  motivations  -  participant's  the  for this  processes  in  by t h e m .  methodology  study.  living To  and  when a t t e m p t i n g  to  feelings,  w h i c h must be b r o u g h t f o r t h t h r o u g h p o i n t of  a  Qualitative  w o r l d - meanings,  subjective  fully  dealing with  experienced  qualitative  indispensable  understand a person's  u n d e r s t a n d more  by young a d u l t s  u n c o v e r more o f  these purposes,  methodologies  s t u d y was t o  identified  w i t h an i l l n e s s achieve  this  view  (Schwartz  the & Jacobs,  1979) . To u n d e r s t a n d t h e life  with a chronic i l l n e s s ,  explore  their  kind of  qualitative  reality.  phenomenological  rationale  the  the  is  its  r e s e a r c h methodology: T h i s kind of  appropriateness  of  elements of  a c c o r d w i t h one  essences,  (1956)  to  another.  the  specific  leads  to  My  a p p r o a c h f o r my my r e s e a r c h  definition  a particular real-life  to  the  address  and my c o r e  a  examination  as  living  necessary  an i n d i v i d u a l ' s e x p e r i e n c e s .  Merleau-Ponty's  study  a young a d u l t  especially  f o r c h o o s i n g phenomenology  i n q u i r y was question.  it  of  Such e x p l o r a t i o n r e q u i r e s  inquiry.  an u n d e r s t a n d i n g o f  as  experience  issue,  of to  phenomenology understand  experience,  are  in  Outline  of  This  study  study  chose a phenomenological  lived-experiences  of  d i s e a s e and c o l i t i s . this  inquiry is  is  the  form o f  the  of  of  the  descriptions  experience.  To t h i s  one c o r e r e s e a r c h q u e s t i o n .  experience  i n f o r m a t i o n from of  the  end  I  This question,  l i v i n g with Crohn's disease  colitis?",  was d e s i g n e d  to  interviews  and w r i t t e n n a r r a t i v e s  elicit  which I c o u l d s y s t e m a t i c a l l y  explore  dealing with Crohn's  My p r e s e n t a t i o n  i n the  u n d e r l y i n g themes o f formulated  young a d u l t s  method t o  a body o f  or  transcribed  from young a d u l t s  uncover the  "What  basic  from  themes o f  the  phenomenon. In Chapter I I , study  is  presented,  a d e s c r i p t i o n of the  nature of  including references  to  concerning the  methodology  the  of  conception  complete  the  research.  participant's structures" These  this  selected,  study  and t h e  Summaries o f  lived-experience,  (Karlsson,  summaries,  while  1993),  transcribed  interviews  large part,  verbatim accounts.  are presented  as  from t h e  regarding  utilized  "situated Chapter  remain,  C h a p t e r IV c o n t a i n s  transcribed interviews  that  the  of  to  III.  original  narratives,  participant's  or c o l i t i s .  procedures  as  and w r i t t e n  experiences  some h i s t o r y  each i n d i v i d u a l  common u n d e r l y i n g themes d e l i n e a t e d  describe  literature  r e f e r r e d to  shortened  this  from a l l  in  the  the  and w r i t t e n  narratives  l i v i n g with Crohn's disease  T h e s e themes a r e r e f e r r e d t o  as  the  "general  structure"  ( K a r l s s o n , 1993).  discussion  of  is  the  themes i s  incorporated in this  may c o n t r i b u t e  to  the  Finally, presented.  discussion.  emotional  Crohn's disease or c o l i t i s  is  Relevant  Ways t h a t  health  also  i n Chapter V, a  of  literature  counsellors  young a d u l t s  offered.  with  CHAPTER TWO R e s e a r c h Methods  In t h i s study  is  chapter,  given.  writings  Along with t h i s  connected  supplied.  the  presuppositions participants,  prior  and t h e  Gerhardt  of  (1990)  of  health  importance. part  of  it  becomes  social  T h e r e has  been  of  research  i n the  in  presentations a l s o be  involved  the of  explained. show  the  used. are  increasingly  a r e a has  i n the  such as  may be l e s s d i s a b l i n g t h a n t h e i r  aspects  quality  very c e n t r a l  increasing recognition  and o t h e r s  study  written  because the is  the  the  and p s y c h o l o g i c a l  She s u g g e s t s t h a t  psychosocial  the  a s more p e o p l e  with chronic i l l n e s s e s  physicians  illness  will  out t h a t  i n d i v i d u a l s with a chronic i l l n e s s , the  the  p a r t i c u l a r methodology  understand the  people  complete  be p r o v i d e d i n o r d e r t o  with chronic i l l n e s s e s ,  care,  a description of  Procedures used  experiences  points  be  my own  t h e way t h e  of  to  this  presentation  were u s e d .  data w i l l  chronic illness.  life  research,  construction  participants'  important to  chosen w i l l  t h e method,  Included i n the  involved i n the  living  of  this  references  formation of  be a d e s c r i p t i o n o f  Examples from t h e steps  to the  and i n t e r v i e w s  analysis  individual  the  nature of  description,  and t h e p r o c e d u r e s u s e d t o  procedures w i l l  data  of  limitations  be p r e s e n t e d .  narratives  the  w i t h the methodology  Some a c c o u n t s  investigation,  will  a d e s c r i p t i o n of  to  grown on  welfare  epilepsy,  of  in  the of that  psychosocial  outcomes  (Scambler & Hopkins,  Armstrong, to  1990)  note that  1989).  a q u a l i t a t i v e method i s  explore the very personal l i f e  living  with a chronic i l l n e s s .  qualitative  Some r e s e a r c h e r s  I also  believe  accounts  i n t o the  experience  on t h e  illness  of  (Murphy, of  experience  of  that  knowledge,  experiences type of  directly  1987).  not r e a d i l y a v a i l a b l e  For a researcher she  everyday l i v e s  A methodological  (1982)  showed t h a t  of  living  with  analysis  improvement i n  of  one o f t h e p r i m a r y r e a s o n s  k n o w l e d g e g a i n e d from r e s e a r c h i n p s y c h o l o g y applicable in counselling practice  process  wherever p o s s i b l e .  persons  n o t as  subjects  (Shontz,  improve r e s e a r c h i s  A way t o do t h i s  is  c o n s u l t a n t s who a r e  involves  a mutual  why  is  1982). include  investigative  r e g a r d i n g t h e i r own c o n d i t i o n s and e x p e r i e n c e s Inquiry that  to  to  treat  b u t as e q u a l p a r t i c i p a n t s i n  r e s e a r c h e n t e r p r i s e o r as  to  the  c h r o n i c a l l y i l l p a r t i c i p a n t s . The l a c k  consideration is  to  Study o f  a b o u t c o n s i d e r i n g and i n c l u d i n g  c h r o n i c a l l y i l l p a r t i c i p a n t s i n the  1982).  to  o r he n e e d s  of people with i l l n e s s .  One way t h a t may h e l p t o the  illness  g a i n e d from r e s e a r c h , r e q u i r e s i n v e s t i g a t o r s  be more c a r e f u l  little  illness.  p r o v i d e i n c r e d i b l e d e p t h and  chronic i l l n e s s ,  illness.  u n d e r t a k e n by S h o n t z  so  illness  must c o n s i d e r p e o p l e ' s  and i n s p i t e  this  of  experience  t h r o u g h o t h e r means  focus  of  r e s e a r c h was b e s t s u i t e d f o r s t u d y i n g a n d  Qualitative  study the  necessary  e x p e r i e n c e d outcomes  understanding a person's perceptions of t h e i r  insight  (e.g.  the  experts (Shontz,  cooperative  such  relationship  between r e s e a r c h e r  p r e f e r r e d method o f  study.  B a s e d on t h e  involving  a mutually cooperative  important  for this  i n the  study,  investigation  experiences.  belief  The d e c i s i o n  the  to  authorities  on t h e i r  A thorough explanation  make t h i s  an o r i e n t a t i o n  be equals  life  None o f  the  of  to  research  the  the  nature  in  be aware o f  of  research.  in-depth d e s c r i p t i o n of  p a r t i c i p a n t s need t o  the  collaborative  the  researcher's  r e s e a r c h agenda was k e p t h i d d e n  from  participant. In t h i s  line  individual's  of  that  it  is  is  to  perspective  patients  patient  of  time  (passive r e c i p i e n t s  o n l y one n o r n e c e s s a r i l y  needs t o  s t u d y how p e o p l e  everyday  lives.  The i n t e n t  role.  t h e most  transcribe  adults  with Crohn's disease or c o l i t i s , i n order to  partners  care).  of  it  in  is  experience.  b y no One  their  chronic  and t h e n  a  a  important.  and w r i t t e n n a r r a t i v e s  understand t h e i r  This  spend o n l y  i l l ,  illness  study  was t o  them,  interviews  this  as  While being  being  manage t h e i r of  of  who a r e s i c k  in their patient  is  phenomenology  I saw my p a r t i c i p a n t s  may be a n i m p o r t a n t a s p e c t o f  means t h e  an my v i e w  taken w i t h i n  important because people  fraction  deals with  with chronic i l l n e s s ,  important that  opposed  view  research that  experience  c o n s i s t e n t with the  as  research  r e l a t i o n s h i p would  p r o p o s e d s t u d y was b a s e d on my v i e w t h a t  thinking.  that  The p a r t i c i p a n t s were i n c l u d e d i n t h e  s t u d y was p r o v i d e d as  inquiry,  the  p a r t i c i p a n t s were s e e n a s  and as  a s much a s p o s s i b l e . the  and p a r t i c i p a n t i s  illness of  young  analyze  The p r i m a r y a i m o f  phenomenological  i l l u m i n a t i o n and u n d e r s t a n d i n g value  of  a phenomenological  discovery  of  perceived  by p a r t i c i p a n t s ,  this  researcher-defined  are  is  experience.  experience  of  being  systematic  1986).  supporting  i n one's  1984).  a phenomenological let  participant's  us  the  of  come t o  is  is  phenomena 1983;  the  like  1990).  is  (Tesch,  is  to  (Tesch,  measured  1983).  experience  (1984),  t h e method o f  f o u r key i n t e r r e l a t e d  experience;  the  1990).  The of  the  Phenomenological the  1990). phenomenology  procedures:  a phenomenon w h i c h s e r i o u s l y  investigating  It  study  by d e s c r i b i n g (Tesch,  and  (Bullington  i n terms  an u n d e r s t a n d i n g o f  human e x p e r i e n c e s  v a n Manen  individual  subjectivity  (Langeveld,  subjective  t u r n i n g to  study  us; 2)  of  than  s t u d i e s what  the p a r t i c i p a n t s  experience  c a n be r e d u c e d t o 1)  to  illuminates  According to  to  the  The a i m o f phenomenology  appears  power t o  life  investigation  value  essence of  The v a l u e  (Polkinghorne,  Phenomenology  it  research  and  Such methodology  r e s e a r c h emphasizes  w o r l d as of  the  1986).  subjective  & Karlson,  The  participant-oriented rather  r e a l l y known  Phenomenological  the  in  lived  i n p r o v i d i n g information with respect  Sandelowski,  its  lies  rather than i n  (Sandelowski,  about which l i t t l e  is  as t h e y  is  1986).  ideas regarding those experiences.  r e s e a r c h method i s  useful  (Sandelowski,  investigation  human e x p e r i e n c e s  preconceived  inquiry  interests  3)  reflecting  on themes  which c h a r a c t e r i z e 4)  d e s c r i b i n g the  and r e w r i t i n g , Limitations  the  phenomenon;  phenomenon t h r o u g h t h e  (p.  qualitative  findings  of  qualitative  research,  that  c a n be g e n e r a l i z e d  study.  is,  to  design  need t o  clear  r e s e a r c h depends  stories  be t h r e a t e n e d  to  tell,  the  degree to  (1981)  suggest that  which the  thought  but the v a l i d i t y of  of  as  p a r a l l e l to  be t h e  external  A s t u d y meets t h e  as m e a n i n g f u l  (Guba & L i n c o l n , findings  derived  findings  of  1989). the  the  the  of  presence  of  "fit"  1986).  degree of  a  can  not Lincoln  against qualitative  the  One o f  or  can adapt t o  their  In a d d i t i o n ,  study  (Sandelowski,  establishing  i n terms  or  c r i t e r i o n of  and when i t s  situation  with  Guba and  validity  outside  study  the  T r a n s f e r a b i l i t y may be  findings  the  its  criterion  o r t r a n s f e r a b i l i t y when i t s the  the  limitation.  those s t o r i e s  proper perspective.  be e v a l u a t e d .  generalizability.  findings  a  a p p l i c a b i l i t y or t r a n s f e r a b i l i t y of  research project  which  on human p a r t i c i p a n t s  fittingness  validity  the p o p u l a t i o n from which  by o v e r g e n e r a l i z i n g  p l a c i n g them i n t h e i r  be  The e x t e r n a l  p a r t i c i p a n t s were d r a w n , may be c o n s i d e r e d Qualitative  writing  t h e Method  c o n s i d e r e d when l o o k i n g a t t h i s of  a r t of  18)  and E v a l u a t i o n o f  The l i m i t a t i o n s  and  it data  audience own is  contexts views  its  experiences  important  that  from which t h e y  the major c r i t e r i a  t r a n s f e r a b i l i t y or  thick description.  fittingness  What t h e  "fit"  are  for  involves  researcher  does  is  to  supply comprehensive  transferability want t o  judgements  apply the  situations  data  i n order to  on t h e  study to  their  part of  facilitate  others  who may  own s i t u a t i o n s ,  i n w h i c h t h e y have an i n t e r e s t  or  (Guba & L i n c o l n ,  1989). The v a l u e discovery lived is  of  qualitative  research resided  human phenomena o r e x p e r i e n c e s participants.  as  in  they  (1981)  Therefore the  c r e d i b i l i t y be t h e  which the value of q u a l i t a t i v e  evaluated.  A qualitative  descriptions  of  experience  study  suggest that  is  also  or readers) after  study  is  research  that  the  would immediately r e c o g n i z e c r e d i b l e when o t h e r p e o p l e  can r e c o g n i z e  the  experience  h a v i n g o n l y r e a d about  it  presents having  their  (other  own. A  researchers  when t h e y  i n a study  Guba  be  people as  value  criteria  c r e d i b l e when i t  a l i v e d experience  the  were  p a r t i c i p a n t - o r i e n t e d rather than researcher d e f i n e d .  against  it  this  and p e r c e i v e d by t h e  and L i n c o l n  the  of  encounter  (Psathas,  1973). The r e t r o s p e c t i v e investigation  of  C r o h n ' s d i s e a s e and c o l i t i s .  relied  on i n t e r v i e w s  people  remember t h e  to  them a t  the  approach predominates  time  and w r i t t e n n a r r a t i v e s . past it  (Jenkins,  limitation  stems f r o m t h e  acknowledge  this  This approach How a c c u r a t e l y  relative  significance  o c c u r r e d may be c o n s i d e r e d  limitation  The f l e x i b i l i t y ,  e v e n t and i t s  in  Hurst,  & Rose,  nature of  adaptability,  subjectivity  1979). the  a  Another  interview  process.  and c l o s e human i n t e r a c t i o n  and p o s s i b l e  bias.  This qualitative of  findings  achieved  investigator a way o f  g i v i n g the  was u s e d as  of  the  are being researched  where  the  (Oakley,  interviewer  (1956)  interviewer's  and f e l t Yahoo, call  that  interviewer  accounts  the  more u s e f u l  when  it  lives  data-collecting  Such a r e f o r m u l a t i o n i s  allows  f o r c l o s e human  connection  looked at the  and Cook bias  which people  to  enhanced  interaction  come t o  lives  i n the  and n o t m a c h i n e s  -  it  is  know e a c h o t h e r  and i s  much o f  fundamental  the  what  work  connection  condition  and t o  admit  in creating  that  personal  that  personal  we  as  fact  some f o r m o f  that  on  Selltiz,  be d e s c r i b e d  inherent  proposes  bias  neutrality  counterproductive  suggest that  which are  (1981)  of  alliance.  a r e human b e i n g s c r e a t i n g  Oakley  be  c a n more a c c u r a t e l y  more t h a n i n t e r v i e w e r  their  (1965)  with p a r t i c i p a n t s ,  identically.  pretense  p a r t and f o u n d i t  differences,  interviewers  into  clarity.  f o r t h o s e whose  participation requires  Deutsch,  interviewer  is  greater  as  1981).  Dexter the  instrument  for researchers.  was r e g a r d e d  suggests that  job i s  r a t h e r then a  between  f o r documenting  (1981)  interviewer's  becomes a d a t a - c o l l e c t i n g  instrument  situation  a strategy  Oakley  meaningfulness  distance  The i n t e r v i e w  subjective  l i v e d experiences.  formulation  emphasized the  by r e d u c i n g t h e  and p a r t i c i p a n t .  Interviewing of  research  under  others  meaningful  research. Guba and L i n c o l n one t h e  (1981)  suggest that  c r i t e r i a f o r meaningfulness  of  confirmability  findings  in  be  qualitative  research.  Confirmability  and a p p l i c a b i l i t y i s specific  strategy  applicability,  to  that  of  used  (Sandelowski,  as t h e  and c r e d i b i l i t y o f  the  congruence  of  this  and  or qualitative  data c o l l e c t i o n the  value  1986) . A  value  fittingness  u s i n g two d i f f e r e n t  determine  a c h i e v e d when  f o r ensuring the  as w e l l  transferability, was  established  is  study  procedures  findings.  One s t r o n g r e c o m m e n d a t i o n made more and more o f t e n studies,  whether  quantitative  or q u a l i t a t i v e ,  is  t h a n one way o f  g a t h e r i n g d a t a be u s e d whenever  (Gorden,  T h i s use  1980).  gathering is  often  that  technique, r e f e r r e d to  With the  data are to  interviews,  cross-check  critical belief  information  Lather  the  this  and w r i t t e n n a r r a t i v e s ,  study  states  data  triangulation is  be deemed c r e d i b l e ,  other,  (1986)  in establishing  that  more  possible  or supplement  as t r i a n g u l a t i o n .  triangulation is  credibility. if  to  o f more t h a n one  that  in  essential  employed  a u t h o r e d by t h e  young  i  adults,  as  two d i f f e r e n t  The t r a n s c r i p t i o n s initially  of  information gathering  interviews  analyzed separately.  r e a d i n g them u n t i l  and w r i t t e n  order to  proceed with the  analysis  c o n t i n u e d by d i v i d i n g t h e  written  narrative into  were s t i l l  treated  as  next  level  of  data.  or written  narrative.  It  were  involved  comprehension  in  the  The  analysis. protocol  At t h i s  point  E a c h u n i t was  a n a l y z e d and t r a n s f o r m e d i n r e l a t i o n t o protocol  stage  interview  smaller units. separate  narratives  The b e g i n n i n g  I had a s a t i s f a c t o r y  techniques.  the  was a f t e r  entire this  and  they then interview  point  that  they  were  establish  c r o s s - c h e c k e d w i t h one a n o t h e r that  the  r e p o r t s were r e l i a b l e .  a n d w r i t t e n n a r r a t i v e d a t a were were  another  one o f  qualitative  the  Auditability  interview  j u d g e d as d e p e n d a b l e  is  Auditability  rigor  A s t u d y and i t s  i n the  was  they  i n which the  specifically  findings  auditable  how t h e  specific  limitations,  of  the  data.  I think that  c o n s i d e r e d as factors  used t o Despite the  leaves a to  in this 1)  how  its  4)  study  the  data  by  setting were  value  and and  possible  s t u d y may be  are i n v o l v e d i n the  young a d u l t s w i t h C r o h n ' s d i s e a s e o r  were  and p r e s e n t a t i o n ,  determine the  present  clear  the  3)  how t h e  some  by  end.  s t u d y and how t h e y  an i m p o r t a n t c o n t r i b u t i o n t o that  path used  1986).  d a t a were c o l l e c t e d ,  technique  are  the  beginnings  or j u s t i f y i n g :  d a t a were c o l l e c t e d ,  applicability  the  .  achieved  included i n the  be  or merit f o r  researcher  reduced or transformed for a n a l y s i s , the  auditability  (Sandelowski,  s t u d y from i t s  explaining,  2)  study  a c h i e v e d when t h e  p a r t i c i p a n t s were approached,  propose t h a t  c r i t e r i o n of  path concerning the  of  Once t h e  r e s e a r c h e r can c l e a r l y f o l l o w  investigator  describing,  (1981)  findings.  when a n o t h e r  5)  to  combined. Guba and L i n c o l n  the  i n order  the  life  colitis.  understanding  experiences  of  My Own A s s u m p t i o n s :  Presuppositions  My own e x p e r i e n c e i n the  present,  points,  of  thoughts,  different  perceptions.  my r e l a t i o n s h i p s ,  and b e h a v i o u r s A variety  of  and w i t h i n m y s e l f  experiences. life.  i n t i m a c y has  experienced  been c r i t i c a l , of  change,  b y my c h r o n i c i l l n e s s own i n t e g r a t i o n  of  h a s b e e n one  been I  illness  there  way.  due t o  live  is  one t h a t  t h r o u g h has  who r e l a t e  f o r me o f  t o was r i c h  least  sense  times  various  life  one  aspects or  in  of  part  t h r o u g h my  young a d u l t s  with  a  been c o n f i r m e d t h r o u g h  many o f  great  in its  m i g h t be a number o f if  at  caused wholly  a g r o w i n g number o f p e r s o n s  experiences  clearly  a new  Discovering a  with  the  M e e t i n g s w i t h t h e s e young a d u l t s  listened  created  e v e n t and s u p p o r t and a f f i r m a t i o n by  experience  d i s e a s e and c o l i t i s stories.  in  other.  That t h i s  encountering  E a c h change  old  o f my  having at  b r i n g s new m e a n i n g t o  the  turning  i n my l i f e ,  because I have  alienation  and  and a t a k i n g on o f  During these changes,  having Crohn's disease.  chronic  in retrospect  These changes g e n e r a l l y  feelings  a significant  Research  i n c l u d e d some s h e d d i n g o f  n u r t u r i n g r e l a t i o n s h i p h a s been c r u c i a l . of  the  seems t o h a v e moved t h r o u g h s e v e r a l  feelings,  awareness o f  to  chronic i l l n e s s ,  which u s u a l l y have  ongoing  Prior  learning.  uniqueness,  common t h r e a d s  s u c h s t o r i e s were e x p l o r e d  Crohn's  same t y p e have  of  consistently  While each  story  I wondered  if  that  emerge  i n a more  would  systematic  One e x p e r i e n c e lowering of colitis, shifts  o f w h i c h I had become aware r e l a t e d t o  self-esteem.  i n c l u d i n g myself,  in feelings  with Crohn's disease  seemed t o  about s e l f .  s e l f - e s t e e m was one o f these  Some p e o p l e  the  experience  I wondered i f  of  living  of with  illnesses. T h e k e y a s s u m p t i o n u n d e r l y i n g my r e s e a r c h  regardless of  or  dramatic  a lowering  common e x p e r i e n c e s  a  of  the  individual  unique f a c t o r s  that  is  shape t h e  that, experience  young a d u l t s w i t h a c h r o n i c i l l n e s s ,  i n v a r i a n t themes w i l l  ultimately  the  this  experience.  It  is  characterize the  assumption t h a t  some essence  of  largely  as  serves  a f o u n d a t i o n f o r my commitment t o p u r s u e a p h e n o m e n o l o g i c a l study  of  young a d u l t s w i t h c h r o n i c  illness.  Participants P a r t i c i p a n t s were s e l e c t e d b e c a u s e i l l u m i n a t e the  phenomenon b e i n g s t u d i e d .  was made up o f  2 0 to  males at  they  could  A volunteer  2 5 - y e a r - o l d young a d u l t females  who h a d been d i a g n o s e d w i t h C r o h n ' s d i s e a s e  least  six  months p r i o r  P a r t i c i p a n t s were a b l e t o final  sample  interplay  I  of  converse  saturation  (when no  i n interview responses,  and t h e  colitis  study.  in English.  A  made up o f  17,  study the 18,  significantly  and w r i t t e n  t i m e t h a t was a v a i l a b l e t o  i n i t i a l l y planned to  adolescents,  and w r i t e  and  t e n p a r t i c i p a n t s was d e t e r m i n e d by an  between theme  new p a t t e r n s emerged),  size  to p a r t i c i p a t i o n i n the  or  sample  narratives  run the  experience  and 1 9 - y e a r - o l d s .  study.  of However,  I  had d i f f i c u l t y this  was  colitis  in obtaining participants.  due t o in this  discomfort  a l e s s e r prevalence age  group,  of  think  Crohn's disease  but r a t h e r ,  a d o l e s c e n t s may e x p e r i e n c e  I do n o t  to  the  or  possible  i n t a l k i n g about  their  illness.  Procedures P a r t i c i p a n t s were r e c r u i t e d t h r o u g h n o t i c e s p o s t e d several  gastroenterology  mainland source  (see  of  techniques written  f o r my s t u d y process.  narratives.  The r e c r u i t m e n t  were s e n t a b o o k l e t involving their  written with the life  interviews,  of  Before the  interview,  blank paper to w r i t e  experience  narrative to individual's In t h i s  the  a  participants narrative  regarding Crohn's disease  interview  experience analysis  b r i n g the  appointment.  by f o c u s i n g  written  It  on a  narratives  dealt written as  or c o l i t i s  as p u r p o s e l y  constructed  were c o n s i d e r e d  experiences affected  a construction  of  by t h e i r  an i n d i v i d u a l ' s  illness. social  or  completed  with Crohn's  are  and  then  young a d u l t s  life  the  of  stories-autobiographies-of  of  in  collection  phone,  The p a r t i c i p a n t was a s k e d t o  history.  partners  and a s s e s s m e n t  over the  only  were a r r a n g e d .  Written narratives.  colitis.  data  lower  were t h e  unstructured in-depth  occurred f i r s t ,  appointments  the  and were s e e n as  Two d i f f e r e n t  were u s e d ,  suitability  throughout  A p p e n d i x A ) . The p a r t i c i p a n t s  data  investigative  clinics  in  life disease accounts  Narratives  world  (Rafoth &  Rubin,  1988).  W r i t t e n n a r r a t i v e s c a n be d e f i n e d  i n w h i c h words a r e s e q u e n t i a l l y experiences occurred  i n the  (Labov,  organized,  o r d e r i n which they  writing  as t h e  summary o f  are b e l i e v e d  to  f r o m t h e i r movement  in it  a narrative is  one's a t t i t u d e  to  towards t h e i r r e f l e c t i o n  to unfold one's  life  (Young,  1987).  a n d summary c h a r a c t e r o f n a r r a t i v e f o s t e r s  of  i n f o r m e d by s i g n i f i c a n t  as  incidents  life  on i t .  sequential life  have  1972).  W r i t i n g a n a r r a t i v e can s h i f t  write  as  a  To The view  (Natanson,  1970). Ricoeur  (198 0)  two d i m e n s i o n s  suggested that  every n a r r a t i v e  one c h r o n o l o g i c a l a n d  the  other  n o n - c h r o n o l o g i c a l . The c h r o n o l o g i c a l c h a r a c t e r i z e s  the  story  a s made o u t o f  creation  of  i n v a r i o u s amounts,  combines  events.  The n o n - c h r o n o l o g i c a l i s  patterned significant  wholes out o f  the  scattered  events. Alexander  (1988)  believes that  the  richest  sources  data a r e those which d e a l with the r e c o l l e c t i o n of  various aspects of  narrative.  People  threatening events  generally  describe  i n v o l v i n g the  respond to events.  to  life  develop  it  which the  individual  incidents  that  is is  seem t o  it  times  as  easier  recollections  questions  Therefore, to life  find  critical  evaluative  participant's  already l i v e d ,  of  f r o m memory  in a  and  written  less  incidents  in their  lives  concerning those  and than  a deeper u n d e r s t a n d i n g o f  describing people, significant  to  same  p r e f e r a b l e t o work f r o m d a t a  be t h e  of  places, memories  a  in  and of  that  experience. the  use  In t h i s  o f w r i t t e n n a r r a t i v e as a means o f  young a d u l t s colitis of  the  s t u d y I was p a r t i c u l a r l y i n t e r e s t e d  make s e n s e o f  h a s h a d on t h e i r l a r g e r s t o r y of  connection  main o b j e c t i v e  aspects of  an i n d i v i d u a l  knowledge,  advantages  o u t l i n e d by O r l i c h the  expression  is  Influence  to  (Gorden,  the  respondent  attitudes,  implies  rooms o f  the  were  respondent's  beliefs,  Columbia.  and p e r c e p t i o n s  s t u d y was d e s c r i b e d and v o l u n t e e r s form  (see  a brief  interview  began.  orienting  statement  free  that  actual  should begin with a clear  interview  were a s k e d  i n f o r m a t i o n a b o u t them  q u e s t i o n n a i r e was c o m p l e t e d ,  (see  interview with a  Appendix C ) . Research introduction to  the  the  the  Appendix D ) . Then t h e y  I s t a r t e d the  might  instrument.  demographic q u e s t i o n n a i r e  p r o v i d e d me w i t h d e s c r i p t i v e A p p e n d i x E ) . Once t h e  Before the  be  personal  began,  complete  can  c o n d u c t e d i n d i v i d u a l l y i n one o f  British  asked to  been  g i v e n an o p p o r t u n i t y f o r  of  a consent  several  feelings  C o u n s e l l i n g Psychology Department a t  complete  the  some w h i c h h a v e  University the  events.  subjective  n o t h a v e b e e n o b t a i n e d by any o t h e r a d m i n i s t e r e d The i n t e r v i e w s  a  beliefs,  1980) . T h e r e a r e  r e s p o n d e n t may e x p r e s s  or  part  most v a l u a b l e when  interview,  is  as  or future  o r any o t h e r  (1978): the  and; the  information,  lives.  to understand a person's  values,  revealed;  Crohn's disease  by i n c o r p o r a t i n g i t  Interviewing  is  u n d e r s t a n d i n g how  e v e n t s and p r e s e n t  attitudes,  distinct  influence  lives  their  between p a s t  Interviews.  the  in  to  were which (see the  general interviews  participants  (Tolor, for to  1985).  This  respondents.  important process  Although t h i s  as u n s t r u c t u r e d ,  unplanned a c t i v i t y .  it  is  type  provides  of  interview  n o t meant t o  The t o p i c  of  information  be a  is  completely  research that  is  being  e x p l o r e d o r m e a s u r e d s h o u l d be a s c l e a r l y d e f i n e d possible  whether  interviewing After began.  is  the  being  I d i d n o t employ a d e t a i l e d  disease  (ie.  actual  interview  I a s k e d an i n i t i a l  as h a v i n g  was  thoughts  t o w a r d g i v i n g d a t a t o meet t h e  the  study,  expression. to  compose  respondents question issues  intended p a r t i a l l y to  b u t I made s u r e  to  own answers  speak  (Tolor,  language  and a t  such as  eye  objectives  on t h e  substance  The i n t e r v i e w  lasted  with the  total  all  allowed subjects  in  understanding and d i r e c t i o n  nodding of  head,  between one and two  of  Body  ongoing development  interviews  audiotaped.  of  respondents  A p p e n d i x F) a n d  contact,  rapport.  T h e i n t e r v i e w was  participants  p a r t i c i p a n t ' s responses.  o p e n p o s t u r e was u s e d t o h e l p t h e  time of  open-ended  primary  length  when  specific  encouraged the  (see  Therefore, the  v a r i e d with the  skills  the  1985) . They a r e v a l u a b l e t o  and t o p i c s .  interviews  freely  focus  about  I a l l o w e d them f r e e d o m  Open-ended q u e s t i o n s their  question  me a b i t  ." This  question  of  g u i d e but had a  [participants  Crohn's or c o l i t i s ) ]  interview  open-ended  perhaps you c o u l d t e l l  y o u were d i a g n o s e d  to  used.  o r i e n t i n g statement the  "To b e g i n ,  as  a s t r u c t u r e d or unstructured approach  very general plan. i.e.,  referred  and of  hours,  e q u a l l i n g 17.1  hours.  Phenomenological of  findings  achieved  investigator lines  by r e d u c i n g t h e  From t h e  scientific  objectivity  t h i n g without of  is  of  the  changing i t .  participant  relationship  phenomenological  researchers  of  participants.  is  their  the  (Sandelowski,  investigators  and was  efforts  notations  enter  the  study.  1984).  of  study  threat  have  a  to  the  investigator-  The c r e d i b i l i t y investigators experiences experiences  becoming  so  enmeshed  difficulty  from t h e i r focusing  participants'  on how  the  by a p a r t i c i p a n t  d i a r y throughout  i n to  data. the  The p r o c e s s  results  d e s c r i b i n g my o b s e r v a t i o n s  with participants of  i n the  c o n t a i n e d my n o t a t i o n s  i n t e r p r e t the  specifically  a possible  No  1986).  This diary to  no way t o  influenced  I maintained a process-type project.  objectivity.  b e h a v i o u r and  threat  own e x p e r i e n c e s  influenced  inquiry,  constructed  e n h a n c e d when  c a n be m o n i t o r e d by d e l i b e r a t e l y researcher  (van M a n e n ,  own b e h a v i o u r and  The p o s s i b l e that  is  lies  (van Manen,  i n r e l a t i o n to  with participants separating  there  study  and i n t e r p r e t t h e i r  as  a socially  However,  research  artificial  reality  i l l u s i o n of  fact.that  a phenomenological  describe  between  phenomenological  itself  produces the  c a n change  value  meaningfulness  distance  and o b j e c t i v e  perspective  phenomenon t h a t rules  the  and p a r t i c i p a n t and by e l i m i n a t i n g  between s u b j e c t i v e  1984) .  of  r e s e a r c h emphasizes  and d e c i s i o n  of  the  my o n g o i n g  diary  did  not  b u t r a t h e r c o n t a i n e d my a b o u t my  interactions  making r e g a r d i n g t h e  conduct  Data A n a l y s i s The i n t e r v i e w s transcribed. booklets.  were a u d i o - t a p e d and  The w r i t t e n n a r r a t i v e s were c o l l e c t e d  Data c o l l e c t i o n ,  analysis,  research project.  participant's they  feel  analysis the  d e s c r i p t i o n s of  h a v e been e f f e c t e d began w i t h the  reading of  life  of  this  Analyses emphasized important l i f e  the  events  to  that  by t h e i r c h r o n i c i l l n e s s .  t r a n s c r i p t i o n of  the  t h e w r i t t e n n a r r a t i v e . The i n t e r v i e w s  the  name o f  Data  i n t e r v i e w and  w r i t t e n n a r r a t i v e s p r o d u c e d 320 t r a n s c r i b e d p a g e s . reference  in  and v e r i f i c a t i o n  occurred simultaneously throughout the qualitative  subsequently  and  Any  t h e p a r t i c i p a n t was s u b s t i t u t e d  a pseudonym. Other p e o p l e ' s d e s c r i p t i v e word r e f e r r i n g  names were s u b s t i t u t e d to the  relationship to  by  by a the  participant. The a n a l y s i s r e s e a r c h as  of  d a t a began i n t h i s  soon as t h e  first  s u s p e n d e d a s much as p o s s i b l e i n t e r p r e t a t i o n s and e n t e r e d individual  who was  own p r e s u p p o s i t i o n s h o l d them a t  bay  r e m a i n e d aware t h a t completely.  d a t a were c o l l e c t e d .  i n t o the world of  in writing, 1990).  the  Some r e s e a r c h e r s so t h a t I also  it  unique list  their  becomes e a s i e r  did this,  but  I  e v e n t h e n b i a s e s c a n n o t be c o n t r o l l e d  C l o s e a t t e n t i o n was p a i d t o  written narratives,  I  my m e a n i n g s and  interviewed.  (Tesch,  phenomenological  and t h e  details  b e g a n by a n a l y z i n g e a c h p e r s o n ' s  the  texts,  and  o f words i n e a c h .  data,  and t h e n  I  identified  to  common themes i n a l l richness  the m a t e r i a l u n t i l  based  on t h e  (EPP)  developed  Empirical  method c o n s i s t  of  phenomenon  involves  in this  one  the  study  was  P s y c h o l o g i c a l Method  The r e s u l t s  of  phenomenological  the EPP-  structures.  i n d i v i d u a l ' s experiences  called a "situated  encompasses a l l  phenomenon,  (1993).  psychological  is  used  Phenomenological  by K a r l s s o n  A structure that  that  vivid  occurred.  The method f o r d a t a a n a l y s i s  the  a significant  structure." A structure  participants'  included i n a study,  is  of  protocols  called a  of  the  "general  structure." First  I read the  participant's  the  data,  data set  transcribed interview  Phenomenological of  entire  content.  reading is  consisting  and w r i t t e n  more t h a n a c a s u a l  The r e s e a r c h e r  immerses  and r e r e a d s ,  and d w e l l s  may a c h i e v e  closeness to  them and a s e n s e o f  refrains upon i t  1990).  The r e s e a r c h e r  (Karlsson,  of  experiences the  open t o  f r o m i m p o s i n g any t h e o r e t i c a l 1993).  themes w o u l d b e g i n t o features  is  with the  the  It  emerge  phenomenon.  include  feeling  was that  the  that  a great  deal  of  a process  remained r e c e p t i v e  to  of  this  process,  so  as  to  s/he  and model  central  (ie.  anger)  p e r c e i v i n g themes was  the  recurrent  i l l u m i n a t e the  U n c o v e r i n g a theme  in so  explanatory  expected  note  whole  text  g u i d i n g framework f o r my i n t e r p r e t a t i o n .  framework,  taking  data,  the  the  narrative.  her/himself  reads  (Tesch,  of  Within  life provided this  ongoing. be open t o  I the  creation  of  new meanings  through the  course  To b e g i n experience,  to  of  that  the  were e x p e c t e d t o  study.  u n c o v e r themes t h a t  I r e a d and s t u d i e d  narratives  a number o f  d i s c r i m i n a t i o n of  times.  interviews  into  The t r a n s c r i p t s  A unit  from a female  This  step contained  narratives  i n the  transcribed  on w i t h u n i v e r s i t y  fall.  I was In t h i s  not  division  is,  unit  34  is  34,  which i s  first  to  analyzed. the  considered  there  occurs  to  each u n i t ,  the  example  and s t u d y i n g  again  made me  to  continue  that  be d e s c r i b i n g back  change  a new u n i t .  sentence, be  the  to  a practical aid  to  in  (35)/  which o c c u r s  in  The  (Karlsson, if  a  few  further  A l t h o u g h s e n t e n c e s were d i v i d e d i n t o of  on  l i k e my  a temporal  then d i v i d e d i n t o  and f o r e m o s t ,  in  back I r e a l i z e d  started  important s i g n i f i c a n c e  analysis  divided  a shift  and t h a t  do i t .  Sometimes I d i v i d e d a v e r y s h o r t  words c o n t a i n e d  units,  be a b l e  this participant  After  description  to  unit  before  university.  1993) .  going  were  quite  and was g o i n g  ( 3 4 ) / B u t when I s t a r t e d  example,  situation  d i d not  b e c a u s e o f my c o l i t i s ,  a n g r y b e c a u s e I wanted t o the  the  interview:  plans  fall  of  written  following  i n my l i f e ,  the  and  were d i v i d e d where  d i v i s i o n occurs  continue  core  The u n i t was marked d i r e c t l y  participant's  to  the  transcripts  O t h e r s a r o u n d me,  in  the  reveal  The p a r t i c i p a n t s '  and w r i t t e n  m e a n i n g was d e t e r m i n e d . transcript.  the  smaller units.  transcribed units.  emerge  separate i n the  next  step,  was a l w a y s  done  in light  of t h e whole  interview  or  written narrative.  In the. next out the  step of  analysis,  the  p s y c h o l o g i c a l meaning t h a t  t h r o u g h and d e s c r i b e d i n the narrative.  The a n a l y s i s  of  p o i n t was t o  the p a r t i c i p a n t has  interview  the  complete  w r i t t e n n a r r a t i v e . To p r o v i d e an example transformation process, presented  below t o g e t h e r  First  unit  the  the  unit.  Finally,  to  continue  fall  because  because  followed  is  and she  she wants t o  l i k e my  continue  that  others  experiences  continue, and t h e  i n the  fall.  do "not  quite  feelings  despite effects  given that  continue university)  this  involves  in  made me a n g r y  of  others'  anger concerns  c o n t i n u i n g may  it.  Comment: T h e i m p r e s s i o n i s (to  presented.  d i d not q u i t e  and t h a t  and was g o i n g t o  regarding her c o l i t i s  plans  of  indented  comment i s  i n my l i f e ,  o f my c o l i t i s ,  her p l a n ,  h a v e on  i n an  is  comment.  by an e x p l a n a t i o n  presented  This p a r t i c i p a n t , perceives  because  this  on w i t h u n i v e r s i t y and s t u d y i n g a g a i n  I wanted t o  like"  of  and  3 4 , p r e v i o u s l y shown a b o v e ,  a methodological  3 4 . O t h e r s a r o u n d me,  plans the  presented  interpreted  interview  with a methodological  The e x p l a n a t i o n  paragraph.  Unit  is  unit  lived  and w r i t t e n  e a c h u n i t was a l w a y s  and t r a n s f o r m e d i n r e l a t i o n t o  trace  participant's  a conflict  that  causes anger. the  light  of  conflict  analysis  of her e n t i r e  transformed concept  As t h e  anger  is  between t h e  advice.  step the  be deemed c r e d i b l e .  interview  is  interview,  this The angry  that  This  and w r i t t e n is  The i n t e r v i e w  essential  do  not  follow  narrative if  and w r i t t e n  in  data  are  narrative  a g r e e d w i t h one a n o t h e r and were c o m b i n e d and as  one w h o l e  t r a n s f o r m e d data of  what K a r l s s o n i n the  (1993)  form o f  situated  step that  set  it  interview  of d a t a .  terms a " s i t u a t e d  is  important to  somewhat,  and a r r a n g e d t h e u n i t s  significant  way.  participant example  I attempted  the  to  in a  find  experiences  l i v i n g with t h e i r  from the  check the  from t h e  f o r e a c h phenomenon.  describes  When w r i t i n g  and w r i t t e n n a r r a t i v e .  structuring  structure"  structure,"  took p l a c e .  I freed myself,  presentation  Then a s y n t h e s i z i n g  each p a r t i c i p a n t s e p a r a t e l y  a synopsis,  structure  transcribed  of  and  and w o u l d p r e f e r t o h a v e h e r  compared i n d e t a i l .  integrated the  next  understood  p a r t i c i p a n t and o t h e r s '  their  In t h e  is  s u p p o r t e d i n many o t h e r u n i t s .  with her decisions  data  unit  transcribed interview  agree  to  this  i n r e l a t i o n to her complete  is  d a t a were  of  "situated  into presented the  original is  in  this  participant's  phenomenologically  t h e most The of  illness.  It  of  suitable  "situated each p a r t i c u l a r  Here f o l l o w s  s t r u c t u r e " of  the  female  an  form  participant  presented  follows  excerpt:  the  earlier.  J a n e t has d e c i d e d t o that  she  that  she has t o  has  r e a l l y wants t o ,  colitis.  looks  still  sick  live  She  argue t h a t  say.  has  she to  others  t h i n k she  continue  a different  part  of  and h e r f e e l i n g s  of  a r g u e w i t h h e r and a d v i s e  her that  too  life  to  t h i n k s the  others  questions  activities. angry  tell she  has  continue  her to  things  her that  she  colitis. in a l l  anger towards  However, t h e r e  no  of  do c e r t a i n  now t h a t  activities,  q u i t t i n g work and s c h o o l .  she  although others  life  continue  incapable  t r y i n g to  lifestyle  stop  I d o n ' t t h i n k I am  with the p a r t i c i p a n t ' s  segment c o n c e r n s h e r s t r o n g w i l l  that  needs t o  She g e t s a n g r y when  However,  This  people  is  i n a l l her  of her s t i l l  r e a l l y wants t o ,  live  say  "I am g o i n g t o  successfully."  (Comment: T h i s p a r t d e a l s because  she  Unfortunately,  c o n t i n u i n g her a c t i v i t i e s .  conflicts  she  and w o r k i n g . J a n e t w a n t s t o  be a b l e t o  her a b i l i t y to  now t h a t  s h e ' s u n d e r t o o much s t r e s s .  u n i v e r s i t y and w o r k i n g .  hears that  her  she  going to  she  lifestyle  tell  that  school  m a t t e r what t h e y  things  a l t h o u g h many p e o p l e  She g e t s a n g r y when p e o p l e  and t h a t  a comment  t r y and do c e r t a i n  going to  going to  example,  a different  g e t s a n g r y when p e o p l e  that  In t h i s  her  other  consider  appears to  be a  may be p a r t i a l l y r i g h t ) .  The f i n a l  step i s  what K a r l s s o n examples  of  themes o f of  the  (1993)  the  terms the  situated  this  step returned to  this  step,  if  raw d a t a .  and w r i t t e n n a r r a t i v e s o f  is  the  effort  be p r e s e n t e d  to  was t o  together  compare t h e d i f f e r e n t  general  in this  last  statements of  original  stories  with  all  anger.  the in  life My g o a l  sufficient the  t h e p a r t i c i p a n t s and my i n t e r p r e t a t i o n .  methodological  Here  "general s t r u c t u r e " i n v o l v i n g  The e x c e r p t w i l l  be f o l l o w e d  by  considerations:  Several  of  the p a r t i c i p a n t s experienced angry  because  of  still  really  of  the  review the understanding w i t h i n  a n example f r o m t h e  that  b a s e d on a l l  s t e p was p r e s e n t e d of  I  interviews  The a n a l y s i s  structure is  themes r e p r e s e n t a t i v e  summarize t h e  theme o f  I  themes.  o f young a d u l t s w i t h a c h r o n i c i l l n e s s .  elaboration to  follows  to  chance t h a t  10 p a r t i c i p a n t s . T h e a n a l y s i s  different  experiences  the  i n the  d a t a from the  terms of  in  a l l the p a r t i c i p a n t s ,  and w r i t t e n n a r r a t i v e s w i t h one a n o t h e r .  participants  all  out a p p l i c a b l e elements from t h e t r a n s c r i b e d  made a s e r i o u s  the  not  An i s s u e p a r t i c u l a r  which c o u l d prevent a proper e x p l i c a t i o n of the  will  the  each p a r t i c i p a n t . I a l s o  when d e a l i n g w i t h t h e m e s ,  left  interviews  the  several  to  (many  which i n c o r p o r a t e s  a phenomenon w h i c h r u n a c r o s s s t r u c t u r e s of  structure  "general s t r u c t u r e "  same phenomena),  situated  may h a v e  a move from t h e  wanted t o ,  t r y i n g to  do c e r t a i n t h i n g s  although others  tell  conflicts that  them t h a t  they they  have  to  live  a different  lifestyle  disease or c o l i t i s . their  life  other  people  their  activities  limit  activity,  Many o f  activities that  participants  understood  as  translation  felt  to  nine  of  ten  anger.  In other  anger"  is  words,  female  from t h e  to  that  what  likely  earlier,  and w o r k ,  data the  by young a d u l t s  the  was  Such a  and w r i t t e n  feeling  right."  female  presented  transcripts  from t h e  a summary o f  from a m e t h o d o l o g i c a l  are t r a n s c r i b e d interviews certain  they're  be a p p r o p r i a t e f o r t h i s  other  think  to  particular narrative.  from t h i s a great  study,  deal  theme o f  of  "feeling  l i v i n g with Crohn's  colitis.  Here f o l l o w s analysis  being t o l d  activities.  that  structure",  them r e f e r  experienced  d i s e a s e and  example  my  transcribed interview a l l the  of  restrict  all  restrict  no m a t t e r  i n v o l v i n g an a n g r y c o n f l i c t .  When l o o k i n g a t out  in  towards  appeared t o  continuing university  was  participant's  the  "situated  about  anger  "I am g o i n g t o  p a r t o f me t h i n k s  When l o o k i n g a t  decision  of  continue  Although angry because of  about h a v i n g t o  participant's  them wanted t o  Crohn's  a r g u e d w i t h them and t o l d them t o  several  Unfortunately,  t h e y have  and had f e e l i n g s  t h i s was p r o b a b l y n e c e s s a r y they say  now t h a t  experiences, participant's  the  different  point  of view.  and w r i t t e n  thoughts,  steps  T h e raw d a t a  narratives  and f e e l i n g s .  transcribed interview,  of  Unit  describing 34  presented  from a  earlier, like'  was  her p l a n ,  b e c a u s e she the  e x p l a i n e d t o mean " t h a t and she  wants t o  d e s c r i p t i o n of  this  experience  female  experiences  continue".  participant's  in light  do  feelings  to  of  A  not  of  The a n a l y s i s  an e x p e r i e n c e  meant  others  quite  anger  t h e n moved f r o m  an e x p l a n a t i o n  both t h i s  transcribed interview  of  what  particular and  written  narrative. In the feeling  a great  reflection interview is  final  step of for  deal  the  of  theme  anger)  on e a c h s e p a r a t e  (life  is  to  participant's  the  The theme i s  a l l the  involves  t h e s e young a d u l t s ,  the  include  A shift  a l l transcripts see  experiences.  f i n d i n g out  experiences  Crohn's d i s e a s e or c o l i t i s • i n c l u d e s  of  transcribed  considered to  participants'  analysis  experiences  explored.  and w r i t t e n n a r r a t i v e t o  c a r r i e d out.  pertains  step,  and how  This  if,  of  if  together  in  final  general,  living  "feeling  it  with  a great  deal  of  anger." Thus, level,  this  theme o f  compared t o  just  anger  is  established  one p a r t i c i p a n t ' s  theme was  experienced  the  s e v e n themes were e x p e r i e n c e d  other  participants.  With t h i s  of  analysis  of  experiences,  each  by n i n e o f  h a v e been  theme o f  shown;  then the  the  ten  anger,  first  a  n a r r a t i v e to  interviews  a l l the  and w r i t t e n  by a l l the  of  participants'  narratives.  This  participants  while  ten  different the  steps  meaning  experiences  individual participant's transcribed interview  written  general  situation.  t r a c i n g out  generalization  at  and  transcribed  from  CHAPTER THREE A n a l y s i s and  The  results  presented  i n the  transcribed the  obtained  data.  present  interviews  Karlsson the  chapter.  first  24.2  section  (1993)  terms  framework o f  "situated  A l l ten  and w r i t t e n  of  this  a "situated  a summary o f  interview  structure" contains  participant's  that  of  useful  at  I released  meaningful  pages a r e the  each p a r t i c i p a n t ' s  the  initial It  Reflections  end o f  the  in A  I  transcribed presentation  myself,  partly,  from  fashion.  pieces  I t r i e d to  the in a  find  the  f o r e a c h phenomenon. On  complete  from the  structure  in this  "situated  combined i n t e r v i e w  chapter.  what  is  method o f p r e s e n t a t i o n  following  narrative.  the  situated  a r r a n g e m e n t and s t r u c t u r e d t h e  phenomenologically  of  a particular participant's  and w r i t t e n n a r r a t i v e .  results  in  each p a r t i c i p a n t s e p a r a t e l y .  c h e c k e d back t o  the  n a r r a t i v e s were u s e d  structure," depicted  consistently  most  are  participants'  chapter provides  When w o r k i n g w i t h t h e  the  data  years.  experiences.  of  descriptive  T h e r e were 7 women and 3 men. The mean age  p a r t i c i p a n t s was The  from t h e  Results  process  structures"  and w r i t t e n d i a r y are  presented  Janet  Janet  is  diagnosed  a 23-year-old  at  the  age  of  female  18.  She was r e c e i v i n g  inflammatory drug treatment in this  study  illness.  and h a d n o t  Janet  symptoms went t o  at  at the  as y e t  as  feeling  situation the  go s e e  age  of  bottle  just  it  l i v e d with  16,  while  f r o m was h a v i n g t o  Janet participate to  keep  longer the  later.  One o f  as p o o r .  She  started  grade  continue  vomit every time for food.  i n enjoyable  do a n y t h i n g ,  and w i t h  activities  it  as w e l l  that  she  s o c i a l i z i n g with friends,  some  She  "to  just So  she  affected  by  she  ate.  With J a n e t ' s  her l i f e  work and e s p e c i a l l y  activities  she  i n energy,  w i t h many o f  r a p i d l y l o s t weight,  food.  11.  symptoms  up w i t h e v e r y d a y r e s p o n s i b i l i t i e s .  involved  noticing  s h o u l d go a w a y . "  the primary  came a s e v e r e d e c r e a s e  enjoyable  t o was  her  began r e a l l y b e i n g  q u i c k l y d i m i n i s h e d any d e s i r e  to  for  attending  and i t  u n t i l she  suffered  inability  participation  " s i c k and weak".  on i t  a year  was  anti-  her  had s u r g e r y  began when she  symptoms  intake  of  She  h e r d o c t o r and h e r d o c t o r t o l d h e r  put a hot water  food  time  a p p r a i s e d h e r own h e a l t h  described herself  Janet's  with c o l i t i s .  This lack  of  a n d an tasks.  her energy as h e r "I c o u l d  to  ability no  n o t p l a y . " One o f  f o u n d she  had t o  say  and p a r t i c u l a r l y when  "no" it  With each  food that  made J a n e t  more and more r e s t r i c t e d , apple  juice  was t o  and c r a c k e r s . " She was  and so r e s o l v e d  to  saw how t h i n she specialist, with  "It  go see  sick, the  her d i e t point  feeling  and t h i s  specialist  of  living  extremely  her doctor a g a i n .  had become he d e c i d e d t o  became off  sick  When h e r  doctor  send her t o  a  immediately diagnosed  her  colitis. Janet  l o s t w e i g h t and a l o n g w i t h h e r w e i g h t h e r  mass v a n i s h e d . "  She was no l o n g e r  she  "I  was b e f o r e ,  ability that  to  herself  really,  During t h i s  as  to  be a s  so much m u s c l e mass,  do a n y t h i n g p h y s i c a l ,  made me f e e l  feeling."  lost  able  r e a l l y bad a l l  t i m e she was n o t  s h e was weak,  thin,  active  I  I couldn't  "muscle as  l o s t my  exercise,  over,  so  general  feeling  good  and h a d no e n e r g y  yucky  about  for  anything. Janet longer that  do.  she  and i f don't  g r i e v e s the  She h a s had t o  enjoys,  I'm not really  activities  " l o s s " o f many o f g i v e up many o f  feeling  feel  like  that  great  going is  afraid  get  time  hospital  her  was g i v e n h e r f i r s t t r a n s f u s i o n was  let's  I have t o  sick,  of  say  getting  like  age  really  of  u n i v e r s i t y J a n e t became blood transfusion.  "very d i f f e r e n t "  x  go  no  skiing'  no,'  I  "no" t o  sick.  b e c a u s e I was  low on b l o o d . " A t t h e  f o u r t h year of  x  can  activities  s k i i n g . " She s a y s  know when I ' m g o i n g t o I e n d e d up i n t h e  she  the  "Somebody m i g h t phone u p ,  b e c a u s e she  ridiculously  things  sick,  "I  these  never  like  the  just  22 w h i l e anemic,  attending and  she  Having a blood  f o r h e r and i t  scared  her.  "The t r a n s f u s i o n s for  were a n o t h e r t h i n g t h a t was new a n d s c a r y  me." The t r a n s f u s i o n s  was,  and a t  what  it  lousy,  p o i n t she r e a l i z e d t h a t  meant t o  feel  healthy.  through Janet's  a full  course  first  year to  d r o p down t o  longer handle the  a lesser  full  course  with  some o f  chance t o off  really  graduate with a l l her f r i e n d s ,  wanted t o  and  fourth  she  c o u l d no  she was  She became  no  close  and now she was g i v i n g up  She was a n g r y t h a t  a t my d i s e a s e b e c a u s e  she  load.  other students,  g r a d u a t i n g w i t h them.  lousy  f o r her  She t h o u g h t  graduate with her peers.  the  knew  feeling  "was f e e l i n g  " T h i s was a b i g t h i n g " f o r J a n e t b e c a u s e longer going to  she  of u n i v e r s i t y  a decision  load.  "no l o n g e r  sick,  three years  came t o  how s i c k  time."  l o a d a l t h o u g h she  low on e n e r g y . " Then she  just  she  I was j u s t  and h a v i n g no e n e r g y a l l t h e  All took  this  made h e r r e a l i z e  I wasn't  she  "I was s o  going to  and I was s c a r e d t h a t  had l o s t  the  pissed  g r a d u a t e when I  I may n e v e r  graduate." Janet of  before."  school."  all  She " f e l t  the  my l i f e  of things  t i m e now, is  okay enough t o  remembers " g e t t i n g  scared at  school  she  "never  me."  get  to  felt  sick" before anxious  afraid to  school."  She  she made i t  a t work a s  and I was s c a r e d a t w o r k .  i n the present,  to bring  that  v e r y a n x i o u s and n e r v o u s g o i n g  nervous about g e t t i n g  and s h e  "I was  "afraid"  "Would I f e e l  "would g e t class  is  to  well."  I'm s c a r e d  and I ' m s c a r e d a b o u t  what  J a n e t becomes s c a r e d when she t h i n k s a b o u t h e r living  with c o l i t i s ,  because  she  has  young f o r e v e r , get  older,  the  loss  just  a chronic illness, it's  this  is  i n v a d e d by t h i s  effect  scares  how h e r  different  she  same."  She  grieves  once had b e f o r e  chronic i l l n e s s .  will  I t h i n k when I g e t  be  when y o u  her  "My i l l n e s s  has  s t o p p e d me f r o m l i v i n g my r e g u l a r life."  J a n e t when she t h i n k s a b o u t h e r f u t u r e  illness  sick  be  you d i f f e r e n t l y  no l o n g e r t h e  and I r e a l l y m i s s my r e g u l a r It  going to  "You're not going t o  good h e a l t h t h a t  t a k e n o v e r and h a s  life,  get  going to  your health  of  b o d y was  and knows i t ' s  future  effect  having c h i l d r e n ,  o l d e r and i f  ? I d o n ' t want t o  "It  and  worries  me.  I do h a v e k i d s am I g o i n g  be s i c k a l l t h e  time,  to  a l l my  life." Janet continues  t o w o r r y a b o u t many t h i n g s  become  a p a r t of  her experience  She i s  t r o u b l e d by h e r i n c r e a s e d c h a n c e s  from h e r c o l i t i s . her,  and s h e  day w i t h o u t  to  l i v i n g with t h i s of  medication. "It's  she  Janet's  is  ever  future  s c a r y because  is  cancer  time  going to full  could  sickness.  getting  P l u s b e i n g on m e d i c i n e a l l t h e  u n c e r t a i n whether  uncertainties,  that  scares  spend a  of  I d o n ' t know w h a t ' s  going  happen." A l t h o u g h work was d i f f i c u l t  knew when she was g o i n g t o tell  anybody t h e r e  t e l l i n g people anyone t o  get  for Janet,  sick,  about her i l l n e s s .  as  she  never  she d i d n o t want She h a s  about her c h r o n i c i l l n e s s .  know a b o u t h e r d i s e a s e b e c a u s e  a hard  She d o e s n ' t she d o e s n ' t  to time like want  them t o  think that  she's  "any d i f f e r e n t o r n o t c a p a b l e  doing something." Janet finds that uncomfortable" treat  finding  out t h a t  "some p e o p l e  she h a s c o l i t i s  her " d i f f e r e n t l y . " Having people  "feel  h e r makes h e r " u n c o m f o r t a b l e " w i t h h e r s e l f . uneasy w i t h t a l k i n g about her i l l n e s s .  are and t h e n  anxious" She i s  fears  Her d i s c o m f o r t w i t h  her  i n v i t a t i o n s to various s o c i a l gatherings.  being with people that  from  She  are uncomfortable knowing about  illness. J a n e t p o i n t s t o how h e r i l l n e s s  discomfort her  around  generally  some p e o p l e k n o w i n g a b o u t h e r d i s e a s e h a s s t o p p e d h e r accepting  of  from o t h e r s ,  and how t h i s  frequently  elicits  causes a decrease  in  self-esteem: I t r y so h a r d t o have t h i s stopper,  avoid having people  illness and i t  makes me f e e l  because  it's  find  makes p e o p l e u n c o m f o r t a b l e . I t  real  is  lousy about myself  p a r t o f me,  that's  I  such a c o n v e r s a t i o n  u n c o m f o r t a b l e w i t h me and who I am as disease  out t h a t  because  also they're  a p e r s o n , my  j u s t t h e way i t  is  unfortunately. She e m p h a s i z e s from o t h e r s ,  how h a v i n g c o l i t i s  and how t h i s  commonly e v o k e s  h a s a huge i m p a c t on h e r  uneasiness self-  image. J a n e t becomes around her j u s t  "angry w i t h p e o p l e t h a t  because  nervous"  she h a s a c h r o n i c i l l n e s s ,  wonders about t h e r e a s o n s However,  feel  they  s h e knows t h e r e a s o n s  feel she  and  she  uncomfortable with her. feels  uncomfortable with  them,  "One o f  disease  is  the reasons  because  i n t h e i r eyes.  It  I feel  I don't  l i k e to  t a l k a b o u t my  l i k e I become a d i f f e r e n t  makes me f e e l  v e r y u n c o m f o r t a b l e . " She  loses her o l d s e l f  i n t h e i r eyes because  someone  and t h e y ' r e n o t s u r e how t o  different,  person  t h e y now s e e act  her  as  around  her. Along with feeling differently,  Janet also  angry about people becomes  that  she  that  she d i d cause h e r c o l i t i s ,  x  or emotions  doctors are close to  Colitis.  So,  her  guilty.  feel  She s t a t e s t h a t  finding  disease,  are s t i l l  l i k e people  J a n e t becomes  are suggesting  that  she  " P e o p l e s a y t o me " y o u ' r e u n d e r t o o much because  think  I feel  that  read  for  trying  She g e t s a n g r y when o t h e r p e o p l e  and I become d e f e n s i v e that  she h a s  a medical cause  she wonders why o t h e r s  feels  She d o e s n o t  I l o o k back and t h i n k  her f o r causing her chronic i l l n e s s . when i t  suggest  "I do n o t t h i n k my  caused t h i s ,  how c o u l d t h a t h a v e b e e n ' . "  that  a n g r y when p e o p l e  somehow b r o u g h t on h e r i l l n e s s .  personality  t r e a t i n g her  t o make  "blame" angry caused  her  stress",  a bunch o f  people  I d o n ' t e v e n r e a l l y know a r e b l a m i n g me f o r c a u s i n g my  disease." J a n e t g e t s a n g r y when p e o p l e much s t r e s s  at  school,  She s t a t e s t h a t  e v e n s t a r t e d when she was f e e l i n g that  my d i s e a s e ,  s h e ' s under  and s u g g e s t t h a t maybe t h i s  reason f o r her having c o l i t i s .  strongly  ask h e r i f  sick.  She  she d i d n o t c a u s e h e r c o l i t i s ,  is  school  too  the hadn't  believes "I d i d n ' t  n o t h i n g I d i d c o u l d have c a u s e d t h e  cause  h e l l that  I  have t o  go t h r o u g h now." J a n e t t h e n l o o k s a t h e r l i f e  colitis  to  see  if  anything i n her past  h a v e made h e r more s u s c e p t i b l e However,  she  basically  free  Janet for  feels of  feels  that  "it  any r e a l  about  it  family history could  contracting c o l i t i s .  c o u l d n ' t have b e e n b e t t e r ,  She f e e l s  and a c c e p t  it.  and who d o n ' t t r e a t h e r any  safe with the people t h a t The p e o p l e  she d o e s f e e l  know a l l comfortable  different.  J a n e t has d e c i d e d t o  still  s h e r e a l l y wants t o ,  a l t h o u g h many p e o p l e t e l l  she has t o  live  a different  t r y and do c e r t a i n  lifestyle  colitis.  She g e t s a n g r y when p e o p l e  and t h a t  s h e ' s u n d e r t o o much s t r e s s .  people  argue t h a t  she n e e d s t o  now t h a t  say t h a t  she  she  things her  that  has  looks  sick  She g e t s a n g r y when  stop going to  s c h o o l and  working.  J a n e t wants t o  c o n t i n u e g o i n g t o u n i v e r s i t y and  working.  "I am g o i n g t o  no m a t t e r what t h e y  I don't think  successfully."  She g e t s a n g r y when she h e a r s t h a t  she  is  incapable of  However,  she t o o q u e s t i o n s  her  activities.  life  Janet doesn't about her c o l i t i s . because the  I am g o i n g t o  say.  Unfortunately,  think  c o n t i n u i n g her her a b i l i t y to  like a lot  be a b l e  to others  activities. continue  in  all  of d i f f e r e n t p e o p l e knowing  "I h a t e t h a t  so many p e o p l e know a b o u t  t h e n t h e r e g o i n g t o be l o o k i n g a t me d i f f e r e n t l y  time."  was  stress."  w i t h a r e t h e p e o p l e t h a t d o n ' t make h e r f e e l  that  I  s a f e w i t h t h e p e o p l e who d o n ' t b l a m e h e r  causing her disease,  differently.  to  before  She g e t s a n g r y when one p e r s o n p a s s e s  on  it all  information consent, like  about her c o n d i t i o n t o  and t h i s  is  others  one o f t h e m a i n r e a s o n s  seems e v e r y o n e  is  people  come t o me w i t h a l l t h e i r  J a n e t g e t s a n g r y when p e o p l e about her  illness  because  and t h e n  inquiring  come t o her to getting  visit tell  want p e o p l e  why s h e  for visitors,  you get  sick,  it,  at the h o s p i t a l because  "It's  just  she h a s a l r e a d y e x p e r i e n c e d a t  illness  she  of  feel  asked  defining %  why d i d they  can  because  this  the  disease."  hands o f  the  her  indicates:  a l r e a d y been t h r o u g h h e l l b e c a u s e last  me q u e s t i o n s wasn't  disease.  about her d i s e a s e w i t h  violations  and t h e  ask  and I d o n ' t want them t o  questions  doesn't  and t h e n be  i n v a d e d t o o much b e c a u s e  She a s s o c i a t e s p e o p l e ' s  expect  about her  l i k e they  to  like  such a hard t h i n g  what h a p p e n e d ' . " " I t ' s  a l r e a d y been  I've  she  and t h e n I d o n ' t want them t o  e n c r o a c h on my p r i v a c y ,  as  l i k e people  then they  l i k e e x p l a i n i n g her i l l n e s s  developed  causes  She d o e s n ' t  asking her personal questions  J a n e t does not  questions  t a l k i n g about her c o l i t i s  them a l l a b o u t h e r i l l n e s s .  with  these  ask her p e r s o n a l  her i n the h o s p i t a l because  many v i s i t o r s  "I  questions."  "to become v e r y e m o t i o n a l . " She d o e s n ' t  I've  doesn't  t a l k i n g a b o u t my d i s e a s e  one a n o t h e r w i t h o u t me k n o w i n g a b o u t i t ,  it  she  her  c e r t a i n p e o p l e knowing about h e r c h r o n i c i l l n e s s ,  h a t e when i t  her  without  before  t h i n g I need i s like  this  a bunch o f p e o p l e  "are you too  this.but  of  stressed  I sure the h e l l  disease, asking  o u t maybe?" I am now.  Janet  continues  emphasizes out." is  that  feels  factor  more s t r e s s "scary."  point  of  control  d i s e a s e has pissed  off  illness." anger  in colitis." now,  like  since developing  one's  do f e e l  the  life  the  she  of  uncertainty,  her  illness  and l a c k o f  that  she  to  the  some o f  the  times."  because of control  it  all has  " T h i s damn  life." I've  feels the  she  finds  now,  losing  control I feel  that  and  when l i v i n g w i t h c o l i t i s .  amount o f  stress  admits  colitis  c o n t r o l at  and  stressed  them i f  more s t r e s s  experience  She ends by s t a t i n g  towards  stress  are  to  so much c o n t r o l o v e r my f u t u r e at  of  that  However,  I am l o s i n g  emphasizes  over  concept  "why n o t h i n g h a p p e n s  "I c e r t a i n l y  feeling  Janet  d i s c u s s the  knows many " p e o p l e  She q u e s t i o n s  a causal  this  she  to  "I am  lost  a great  t o my deal  of  fear,  created  i n her  life.  Anita  Anita  is  a 25-year-old  diagnosed  at  the  age  treatment  at  the  time  had bowel  resection  participating. interview "sick".  as  Anita  not  of  14.  of  female  with c o l i t i s .  She was r e c e i v i n g  appraised her h e a l t h  illness at  She d e s c r i b e d h e r s e l f  was  steroid  her p a r t i c i p a t i o n i n t h i s  s u r g e r y once f o r h e r  good.  She  the as  study  prior time being  and  to of  the  Anita's  situation  had i t s  v a c a t i o n with her r e l a t i v e s . having a l o t her to  of  pain  a doctor,  After spending  deal  Anita  never  that  her  life  most  because of  having  is  for  she  is  treated  had  began  hospital.  took  colitis.  found  herself  She was of  put  time.  as  lifestyle  hospital.  she  growing  She f e e l s  like  a young a d u l t " b e c a u s e  "institutionalized".  time  on  medications.  has t a k e n a c o m p l e t e l y a l l the  and  long periods  i n the  her l i f e  she  Anita  a different  " f u l l y developed  s o much o f  states that  it  so much t i m e  spending  has  different spent  differently  She  path  feels  than  in hospitals.  by o t h e r s  of  because  She of  colitis.  When A n i t a w a s n ' t and she  states that  horrifying.  illness  her experiences  and m e d i c a t i o n s .  by o t h e r s  illness.  Because  trips  the  students.  of  at  school  was  in school  the  in  school,  were and  visible  being side  She remembers b e i n g  effects treated  b e c a u s e she h a d a c h r o n i c  b a t h r o o m , and t h i s  her.  she  "very u g l y  Anita's illness  They would f o l l o w  make f u n o f  hospital  students because of  horribly  to  i n the  She remembers f e e l i n g  h a t e d " by o t h e r her  i n the  and o b s e r v e d  states that  up a n d s p e n d i n g  of  of time  was  Her r e l a t i v e s  was d e t e r m i n e d t h a t  also prescribed various  has  14-years-old  being diagnosed with c o l i t i s  t h r o u g h many t e s t s  she  She was  when s h e  i n h e r stomach a r e a .  and i t  a great  She was  beginnings  she  had t o  was n o t i c e d  her to  the  by  take  frequent  other  b a t h r o o m and  then  Anita  states that  other teenagers feel  like  She f e l t in  because  Anita  of  being s i c k ,  " t h e r e was d e f i n i t e l y  l i k e a " f r e a k " by and t h e y made h e r  s o m e t h i n g wrong" w i t h h e r .  " a t t a c k e d " by o t h e r s h e r own age and v e r y  comparison to  illness  she was t r e a t e d  o t h e r s h e r own a g e .  experience  feels  that  set  she  She s t a t e s t h a t  h e r a p a r t from " n o r m a l "  is  not  different  "normal" because  her  children.  she has  this  disease. Anita  s t a t e s that the disease  abnormal t r e a t m e n t . " isn't  s o much t h e  situations  that  t h e way s h e also  is  She f e e l s  illness  she  is  the  that is  "real  m i s e r a b l e but  itself  is  it  the  of her i l l n e s s ,  i n those s i t u a t i o n s .  colitis  inhumane a n d  i n her experience  p l a c e d i n because  treated  states that  that  causes  Although  and  she  m i s e r a b l e and  inhumane. Anita's her  feel  rushed off  She p u t s  hair  c o u l d be t r e a t e d  in  "I n e v e r knew when I was g o i n g  to  as  the being  experience.  She r e c a l l s  of her i l l n e s s ,  coming out  that  e m p h a s i s on t h e s e f e e l i n g s  remembers many h o r r i b l e  l i v i n g with c o l i t i s . experience  girl"  made  t o h o s p i t a l and p u t t h r o u g h h e l l by  important i n her Anita  sick,  others chose.  medical world." very  and t h e t r e a t m e n t o f h e r i l l n e s s  l i k e an " u g l y ,  any way t h a t be s i c k ,  illness  images  "lots  of  i n her  experiences  blood"  i n her  and she remembers l o t s  in handfuls.  She a l s o  coming out o f her hands. A l l of t h e s e  of  her  remembers h e r  nails  incidents  caused  are  either Anita  by t h e to  disease  c o n t r o l the  This  illness  itself  symptoms o f  it.  She f i n d s  colitis she at  but doesn't  doctors  Anita  also  having t h i s it  it  t h e n g o e s on t o the  isn't  things  feel  she  know who she admit t h a t  is  put through she  is  feels  angry about  c a n be a n g r y a t .  of  this  She i s  just  anyone,  because  and h e r b o d y  now r e a l i z i n g  She h a s  be a n g r y a t ,  turns her h o s t i l i t y  Guilt  is  another emotion t h a t illness.  help her,  she  still  "But I c a n ' t  experiences  angry at the  "I h a t e d them and I s t i l l  experiences  for that  feeling  colitis  do,  she h a s t o  they  times  doctors are only  and t h e n I  guilty.  who trying feel  hate."  and she  e n r a g e d by a l l t h e  is  anger. angry  things  and h e r d o c t o r s p u t h e r t h r o u g h and a l l  medications  blame  frequently  a great deal of  a n g r y f o r b e i n g h u r t by h e r c o l i t i s b e i n g h u m i l i a t e d . She i s  they  that  the  and t h e n f e e l s  g u i l t y because  and a n g r y a t m y s e l f  Anita  she  She i s  h e r and t h e n f e e l s  guilty  on h e r s e l f ,  for  difficulty  me t h r o u g h t h o s e d e g r a d i n g p r o c e d u r e s . " So a t  treat  focussed  t h e y were a l l t r y i n g t o h e l p me when  Anita  to  is  has d i f f i c u l t y e r a s i n g  self-blame.  r e a l l y know who t o  this  her  However,  some o f h e r a n g e r  anger towards h e r s e l f  chronic illness.  content  of  because  f o r a l l the t e s t s they put her through.  doesn't  because  to  "very unhappy and  w i t h h e r anger r e g a r d i n g her d i s e a s e because  put  given  disease.  d i f f i c u l t because  her f a u l t but s t i l l  emotional  the  causes A n i t a to  very angry" over a l l the of  o r by t h e m e d i c a t i o n s  She  is  for  that  her  the  t a k e t o t r y and c o n t r o l i t ,  "A l o t  of  the medications  t h e y p u t me on and a l o t  d i d were p r e t t y u n p l e a s a n t . since  for  infringing  Anita  I've  resented  on my body t h a t  emphasizes  15,  how many t i m e s completely  the v i o l a t i o n t h a t  doctors  from the  tests  they  them  ever  a l l of  she  felt  shoved t h i n g s  to  count of ,  up my r e c t u m .  any d i g n i t y . " F o r h e r t h e  "extreme  beginning of her diagnosis,  abuse" t h a t  and t h e  while  and p r o c e d u r e s . "  t h e r e were t o o many i n c i d e n t s  s t r i p p e d of  inseparable  the  way."  b e i n g p u t t h r o u g h many " d e g r a d i n g t e s t s "When I was  of  she  felt  disease  felt  c o n t r o l she  I  from  had t o  is the  give  up o v e r h e r b o d y . Anita  feels  her subsequent colitis.  a "total  lack of  b o d y image s i n c e  yourself  talk  to  feels  and t h i s  anyone a b o u t t h i s  aspect  it  very hard  of her experience  n o t h i n g t h a t matches my e x p e r i e n c e  violations  bring  with  and how i t  upon y o u r body t h a t t h i s  to  t h e way y o u  p a r t of her i l l n e s s  d e s t r u c t i o n o f my s e l f - e s t e e m , the  effects  f r o m t h e n on i n . " She f i n d s  very alone with t h i s  "I f i n d  being diagnosed  "Somehow when y o u ' r e i n t h e h o s p i t a l y o u r r i g h t s  y o u r own b o d y a r e t a k e n away, see  c o n t r o l " o v e r h e r body and  as  to she  experience,  regarding the is  so t i e d  illness  seems  in with to  about." Anita  also  feels  illness  experience.  she,  times,  at  is  I know i t ' s  a great  Going out  fearful  of  deal of  fear  in public is and she  as p a r t o f  her  one o f  things  the  expresses:  a b i t w e i r d b u t when I ' m n o t  I ' m s c a r e d t o go o u t anywhere b e c a u s e  feeling  well  I n e v e r know  what's g o i n g t o happen,  and I p r e f e r t o  h a v i n g a n y t h i n g happen. I t h i n k i t ' s this  new  to  be so  missed  "I'm always afraid  of  afraid  l o t s of  o u t on a l o t  as b e i n g f u l l  of  lost grief  without  because as fear  sad t h a t  because  situations of  fear  I  have  now.  excitement  and f u l l  I know  I've  Anita  of  e n d s by  teenage  and d i s p l a y s a g r e a t  "I y e a r n f o r my p r e v i o u s  and my h e a l t h y body r a t h e r t h a n t h i s  h a s b e e n t a k e n o v e r by  of  sad f o r h a v i n g  being a f r a i d . "  of her c o l i t i s ,  she d o e s t h i s .  of  and I ' m a l w a y s  l o o k i n g b a c k on how much o f t h e she  avoid  fear.  She c h a r a c t e r i z e s h e r l i f e grieving.  just  years deal  world  one  that  colitis."  William  William  is  a 2 5 - y e a r - o l d male w i t h C r o h n ' s d i s e a s e .  was d i a g n o s e d a t t h e  age o f  inflammatory drug treatment in this  at the time of  h e a l t h at the  He d e s c r i b e d f e e l i n g  t h a t . h a d been t h e r e  William's "exorbitant afraid  He was r e c e i v i n g  "a p a i n "  "consistently  time of in his  for  illness.  the  interview  months."  stomach d i s c o m f o r t . "  I was when a l l t h e s e w e i r d t h i n g s  as  abdominal r e g i o n  s i t u a t i o n began when he f i r s t  amounts o f  anti-  his participation  s t u d y and h a d n o t had s u r g e r y f o r h i s  William appraised his poor.  14.  He  felt "Perfectly  were h a p p e n i n g  in  my b o d y . " "Because  of  a l l the  s t o m a c h I was u n a b l e t o e x i s t e n c e was g o n e . " overnight. the  p a i n I was e x p e r i e n c i n g  continue r e g u l a r l y i n school,  He f e l t  like his  life  normal  had changed  " T h i s t h i n g h a d t a k e n o v e r my b o d y ,  hospital,  i n my  and n o t h i n g was e v e r g o i n g t o  I was  be t h e  sent  to  same  again." William's doctor A stomach s p e c i a l i s t disease, series  of  life  He was  told his  mother t h a t  "painful, felt  scary,  like  it  in a hospital  scared of  and e v i l wasn't  he h a d C r o h n ' s  i n the h o s p i t a l  He f e l t  alone  when no one was t h e r e visit  h i m away f o r especially  be  living  procedures.•  n e v e r knowing what was g o i n g t o  test.  happen  l i k e he was  sorry for."  "I was  W i l l i a m was  " f e a r f u l " of h i s  next  another at  night  t o keep him company. When p e o p l e  h i m , he f e l t  a  tests."  and u n d e r g o i n g a l l t h e s e  come and w h e e l  feel  hospital.  r i g h t f o r him t o  o r who was g o i n g t o  come t o  the  a n d t h e n h i s m o t h e r t o l d h i m . What f o l l o w e d was  William his  i m m e d i a t e l y s e n t him t o  time did  "someone f o r them  s c a r e d and e v e r y o n e  felt  sorry  to  for  me."  of  everything that  also  differently  after  got  treatment."  turned  into  scared  mother  H i s mother r e a c t e d t o him  he was d i a g n o s e d w i t h C r o h n ' s d i s e a s e , "A l o t  of  e x t r a pampering t h a t  "I  then  overprotection."  W i l l i a m ' s m o t h e r t o l d him n o t t o calm at  "I was  was h a p p e n i n g . " He remembers h i s  being very scared.  special  "situation".  a l l times.  "I was s u p p o s e d t o  get  a n g r y and t o  not get  upset  stay  because  it  m i g h t b o t h e r my s t o m a c h . " He was u n s u r e how t o  his  f e e l i n g s when he w a s n ' t s u p p o s e d  to  somehow  deal  with  acknowledge  them. After  W i l l i a m was d i a g n o s e d w i t h C r o h n ' s d i s e a s e ,  remembers b e i n g a b l e  to  b e h a v i o u r . " He r e c a l l s  get  away w i t h  breaking his  "various types  mother's  was  to  stay overnight  r e a l l y u p s e t about  apologized. this  "In t h e  situation  Crohn's  it.  allowing  a  He " f a k e d " t h a t  end I g o t my w a y . " W i l l i a m s t a t e s occurred before  he  then  that  he h a d  disease.  go t h r o u g h a s  to  the  one o f  having Crohn's disease.  "many a b u s i v e  made W i l l i a m f e e l  nauseous,  he w a s n ' t  fully  remembers b e i n g of  initially  the  x-ray examinations.  looking.  He f e l t  same t i m e he f e l t  left  alone  in hospital  "lonely"  would l e a v e him a l o n e  liquid he  because He  corridors for  long  William  b u t t h e n came t o w i s h t h a t  so he w o u l d n ' t have t o  could  " i n v a d e d by  "guilty"  f o r more t e s t s .  with "liquid  The  cooperating with the medical s t a f f .  time while w a i t i n g felt  drink  so he dumped a s much a s  down a s i n k when no one was but at  he h a d  experiences  He remembers h a v i n g t o  one o f h i s  these tests"  tests" that  t h e most d i f f i c u l t  c h a l k " as p a r t o f  periods  day.  bad  H i s mother c o m f o r t e d h i m a n d  would have never  William points to  on a s c h o o l  of  l i v i n g room  window o n c e b e c a u s e he was mad a t h e r f o r n o t friend  he  go  people  through  anymore. W i l l i a m ' s m o t h e r w o u l d t a k e him o u t breakfast  after  the  tests  and he f e l t  for his  favourite  appreciative  but  didn't  r e a l l y take pleasure  c o u l d never enjoyment stomach.  full  of  talk  He m i s s e s  this  lost"  because  "being able to  illness  of h i s  enjoy  just  diseased  food."  and a l l he had l o s t  was v e r y b e n e f i c i a l  Crohn's disease, One o f  but I  saw a c o u n s e l l o r a t t h e h o s p i t a l who h e l p e d h i m  about h i s  feels  "Thank-you,  h e a r t i l y e n j o y them a n y m o r e . " "The  e a t i n g was  William  from i t ,  the  with this  as he things  because  of  it.  i n h e l p i n g him cope w i t h  He the  states: that  counsellor  is  I discovered through t a l k i n g that  I c a r r y around a l o t  fear  because  I n e v e r know when I am g o i n g t o  feel  p a i n and h a v e t o t a k e t i m e o f f  know when my i l l n e s s  is  get  of work.  I  of sick,  never  g o i n g t o t h r o w a w r e n c h i n t o my  life. He f e e l s  that  of  fears.  these  c o u n s e l l i n g has h e l p e d him t o d e a l w i t h William also  who p l a y e d a m a j o r r o l e "bearable." for  counsellor along with t h i s  a friend  h e l p e d me t o else  i n h e l p i n g make h i s  "The w h o l e h o s p i t a l e x p e r i e n c e  him but the  a c t e d as  remembers h a v i n g a m a l e  and h e l p e d h i m t o  quit feeling  feel  stay scary"  particular  "safer."  sorry for myself  nurse  hospital was v e r y  like  some  nurse  "They  also  everyone  was." William  "hated" h a v i n g people  feel  made a d e c i s i o n t h e n t o h i d e h i s  disease  talk  feel  about  it,  "Having people  then people won't feel  s o r r y f o r h i m . He from o t h e r s ,  "Don't  sorry for you."  s o r r y f o r me a l l t h e  time,  c a u s e d me  to  feel  sorry for myself."  yourself  "You d o n ' t  with a l l these people  Although William doesn't to  prevent people  that  his  discuss  from f e e l i n g  with others  over  prevent  it  some s o c i a l  sorry for his  about you."  illness  v e r y much,  s o r r y f o r h i m , he  believes  controls  and  his  and he r e f l e c t s  E v e n t h o u g h I t r y t o keep doesn't  v e r y good  feeling  Crohn's disease s t i l l  relationships  feel  it  life  f u r t h e r on  this:  u n d e r l o c k and k e y ,  f r o m c o m i n g i n t o my l i f e  situation.  his  It  it  and t a k i n g  really affects  me i n a  b i g way and h a s r e a l l y s h a p e d my p e r s o n . He s t a t e s t h a t he  is  today.  his  disease controls  him and h a s made h i m who  " T h i s d i s e a s e h a s t a k e n o v e r and i s  a huge p o r t i o n o f my l i f e .  controlling  I am who I am b e c a u s e  of  Crohn's  disease." William difficult  likes  times  He d e s p i s e s t h e he h a t e s t h e  who he  is  b u t he h a t e s some o f  he e x p e r i e n c e s pain that's  hours spent  with having Crohn's  associated  i n the  with his  b a t h r o o m . He h a t e s  "Food i s  now j u s t  consume  survive.  My whole p e r s p e c t i v e  and s o many o t h e r t h i n g s  i n my l i f e  something  have o c c u r r e d i n W i l l i a m ' s l i f e .  many l o s s e s  and i s  just  them.  slowly  f a c i n g the  He i s  healthy  body and w i l l  rest  his  of  life.  now c o m i n g t o fact  He h a s  and  not  I have on  have s e v e r e l y  Since being diagnosed with Crohn's disease changes  disease.  illness  e n j o y i n g good f o o d , i n order to  the  to  food  changed."  numerous experienced  t e r m s w i t h some o f  that  he h a s  lost  his  now l i v e w i t h C r o h n ' s d i s e a s e  for  However, W i l l i a m ends by s t a t i n g  that,  the "I  cry alot changes  and I ' m s c a r e d s t i f f and t h e  l o s s e s as t h e y  can,  and hope t h a t my l i f e  live  one d a y a t  of  fear  b u t I must d e a l w i t h come,  stay  active  as  I  t u r n s o u t o k a y . " He a t t e m p t s  a t i m e a l t h o u g h he s t i l l  about h i s  as  the  f u t u r e and a l l t h e  feels  changes  to  a great  he  is  deal  to  face.  Elaine  Elaine  is  a 2 3 - y e a r - o l d female w i t h c o l i t i s .  diagnosed  at  the  treatment  at the  age  of  22.  She was r e c e i v i n g  surgery twice  time of  the  interview.  good as  she  d e s c r i b e d how she h a s and f e e l s  Elaine's began t o because  feel  for her i l l n e s s  E l a i n e ' s health at the " n e v e r gone  " s i c k most o f  s i t u a t i o n began a f t e r very sick.  s h e knew o f  the  the not  into  She became " g e n u i n e l y  she  anxious"  and h e r  symptoms  came t r u e " a s "I  her  was  scared."  c a u s e d by h e r c o l i t i s . fear.  t i m e was  she d i d i n d e e d h a v e c o l i t i s ,  Along with fear,  is  up t o  h e r 22nd b i r t h d a y a s  were v e r y s i m i l a r . E l a i n e ' s "worst f e a r s  frightfully  s t u d y and  time."  someone who h a d c o l i t i s  doctor t o l d her that  was  steroid  time of her p a r t i c i p a t i o n i n t h i s  had bowel r e s e c t i o n  remission"  She  Elaine  lives  w i t h many o t h e r  However, t h e p r i m a r y one s h e  She s t a t e s t h a t ,  "it's  been a y e a r o f  fear  emotions mentions never  k n o w i n g when I ' m g o i n g t o because I s t i l l  haven't  herself  to  symptoms,  gone i n t o  Although E l a i n e is forces  feel  not  continue  in remission life  tasks  continued working although  for  her h e a l t h ,  b u t she  finds  the  limitations  it  upon h e r i s  probably  shouldn't  hard just it  to  to  job.  colitis  She w o r r i e s  day w i t h o u t I will  about whether  getting  sick,  She s t a t e s t h a t ,  worst  aspect of  main cause o f  the  causing  without  everyone  for  Elaine  I do b u t  a scene,  the  she  finds  tells  a l l this  This of  it want  the at  the  I make i t  the  I have a c h r o n i c  causes a great  the through  through the  through the  little is  left  deal  of  h a v i n g one c o n c e r n a f t e r  if  day  I make i t  I make i t  the  worry of  not knowing i s  "Will  her  through  constant  a l l t h e w o r r y u s e s up what  s u c h as w o r k .  find  "The n o t k n o w i n g i s  will  f i n d i n g out t h a t  and  I  I don't  through work,  constant  will  I  especially  l e a v e s and t h e n h a r d l y any e n e r g y  h e r as  "I know  she w i l l make i t  t o work,  sick,  illness  worry" r e g a r d i n g  and a n x i e t y . "  getting  without  She s t a t e s t h a t  fear  choice  life."  "There i s  "the  she  She  best  her  difficult.  upon h e r ,  having c o l i t i s . "  day w i t h o u t  tasks,  "constant  be o k a y t o make i t  colitis  accepting  I do i n my  may p l a c e  etc."  the  may n o t be t h e  that  sick,  i n c l u d i n g work.  s t o p b e c a u s e o f my s t u p i d d i s e a s e .  l i v e s with  limitations  it  and f e e l s  be w o r k i n g as much a s  l i m i t everything Elaine  s c a r e s me  remission."  has  puts  and i t  day  day illness."  energy for  life  frustration another.  w o r r y i n g v e r y t i r i n g and v e r y  hard.  Elaine  found l i f e  She c o u l d u s e an i l l n e s s . colitis the  h e r e n e r g i e s on l i f e  She saw h e r s e l f  and e v e r y t h i n g  "damage done" t o  finds  so much e a s i e r  and n o t  having  colitis.  on w o r r y i n g a b o u t  a s much h a p p i e r b e f o r e  in life  the  before  was e a s i e r .  easier  life  e v e r y t h i n g h a r d e r and t h i s  she  having  Elaine  grieves  once h a d .  She now  makes h e r " a n g r y and v e r y  sad." Having c o l i t i s losses  h a s b r o u g h t a b o u t an a s s o r t m e n t  i n which E l a i n e g r i e v e s  over.  brought her personal s a t i s f a c t i o n points  one o f  activities those  that  is  unhappy when I c o n t e m p l a t e  now d e a d .  gratifying really  before  infuriates  Elaine's greatly  feel  I h a d and a l l t h e  how i t  this  that  depleting  quite  "I f e e l  longer  I c a n do a s much w o r k i n g as  loss  of  depressed  it  it  is  I am d o i n g  do now b u t more what w i l l  now t h a t  she  her a b o u t my  "I d o n ' t know how much  d a z e d and s c a r e d b e c a u s e  do w i t h my l i f e  and  o f my  now."  " C o n s t a n t u n c e r t a i n t y " a r e two common words  feel  and  a b i t . " Along with anger  s a d when she t h i n k s a b o u t t h e  "not what t o  life  I d i d and  illness  "As a c o n s e q u e n c e  She f i n d s work l o n g and h a r d .  "Now I  my  p e r f o r m a n c e a t work makes h e r a n g r y a s  work."  to  she  me.  h i n d e r e d by c o l i t i s ,  feels  fun a c t i v i t i e s  n o r m a l l y good j o b p e r f o r m a n c e ,  do."  losses  E x i s t e n c e was so much e a s i e r  I got  c o n d i t i o n my work s u f f e r s  life,  that  to:  I constantly  also  is  Loss of  of  in  Elaine's  I be a b l e  to  I d o n ' t know what  I have c o l i t i s . "  She  is  u n c e r t a i n how one This question  living  d i s e a s e got  supposed t o  causes f e e l i n g s  s c a r e d because since  is  with c o l i t i s ,  she  She wonders  and p e r h a p s t h a t  doubts t h i s  childhood. illness.  confusing.  of  her  Elaine  if  t a l k about p o s s i b l e  breath  spends  is  confused about the  this  should get  and q u e s t i o n s  and happy  any more is  colitis  from  stress  causes  of  w h e t h e r t h a t may h a v e However,  she had i n h e r  caused  i n the life  major i l l n e s s ,  now h a s t o d e a l w i t h .  a "dead end" b e c a u s e  the  she d i d .  c o u l d have caused t h i s she  a  her  she knew and t h i s  wonder a b o u t c a u s e and p o n d e r s h e r d i e t .  and h e r e a t i n g  cause of  She p o n d e r s h e r p a s t h a b i t  the  of  However,  time t h i n k i n g about o t h e r p o s s i b l e  doubts t h a t  symptoms t h a t  Elaine  same  before and  continues  However,  that  she was v e r y c a r e f u l w i t h h e r  the to  too health  habits.  E l a i n e remembers b e i n g v e r y h e a l t h c o n s c i o u s . recalls  about  causes  t h a t h e r w o r r y i n g was n o t  and i n t u r n c a u s e d h e r d i s e a s e .  having c o l i t i s  is  be  brought about her i l l n e s s .  She wonders why she  illness.  she  "I'm  maybe she w o r r i e d t o o much a s  t h a n anybody e l s e ' s  procrastinating stress,  " f e a r and a n x i e t y " .  h e c k I d o n ' t e v e n know how  n o r m a l amount o f w o r r y i n g t h a t Elaine  colitis.  as remembers h a v i n g a v e r y h e a l t h y  She r e c o g n i z e s  exaggerated  with  i n my b o d y . "  illness.  child  of  life  I d o n ' t know what I am s u p p o s e d t o  E l a i n e t h e n g o e s on t o her  live  e a t i n g h e a l t h y and e x e r c i s i n g  diagnosed with c o l i t i s .  She f e e l s  She  r e g u l a r l y before  a great deal  of  being  frustration  i n not knowing t h e  participated  of yet,  if  I,  However,  b e e n no m e d i c a l c a u s e  i n some way as  and t h i s  of her i l l n e s s .  i n many s p o r t s b e f o r e h a v i n g c o l i t i s  very p h y s i c a l l y active. as  cause  a child,  makes me f e e l  .  . because  fully  a n d was  there  found I s t i l l  caused myself t o get  guilty,  She f e e l s  Elaine  is  diagnosed with c o l i t i s  angry at h e r s e l f .  and t h i s  being angry at myself a l o t  anger" at not  self-worth  self  l i k e the  because  is  She  idea that  is  thought that  also  see  herself  as  somehow  due  to  She  I get  colitis  angry  at  allude to  the  "When anyone,  s i c k because  defensive  does  emotionally  Along with g e t t i n g  I probably got  on m y s e l f ,  being  she may have c a u s e d h e r  she might have caused h e r d i s e a s e ,  much s t r e s s  has  of the time." E l a i n e ' s  g e t s a n g r y when o t h e r p e o p l e  seems t o m e n t i o n t h a t  she  states  probably p a r t l y  f o r p o s s i b l y causing her i l l n e s s .  she t h e n has t o  she  colitis  p a r t l y due t o h e r " g u i l t a n d  or p s y c h o l o g i c a l l y unstable. herself  wonder  angry t h a t  t h a t h e r " s e l f - w o r t h has d i m i n i s h e d g r e a t l y s i n c e  diminishing  has,  guilty."  Along with f e e l i n g developed c o l i t i s .  ".  Elaine  I put  and a n g r y . "  too  Elaine  continues: I  sometimes  colitis  feel  because  l i k e I am somehow t o there r e a l l y is  nobody e l s e t o  a n d I become u n e a s y a r o u n d p e o p l e t h a t am t o  blame f o r h a v i n g i t .  a r e a l dud.  blame f o r h a v i n g blame :  suggest that  T h i s makes me f e e l  I  l i k e I am  Anger d i r e c t e d towards o n e s e l f , b l a m e d by o t h e r s Elaine's  self-blame,  are c o n t r i b u t i n g factors  and  to  feeling  a lowering  self-esteem.  E l a i n e has d i f f i c u l t y t a l k i n g w i t h o t h e r p e o p l e her  illness.  fear  that  T a l k i n g about her i l l n e s s  she  have a r e a l getting  d o e s n o t want t o  emotional,  especially the  show o r e x p e r i e n c e .  part that  She s p e a k s  is  Elaine's life  h a v e been  make c h a n g e s However, illness  she h a s  is  i n order to  diagnosed  she  with  s t a t e s t h a t more and more she  She  has  had is  to  colitis. is  decisions.  taking At  the  around c a r e e r and may p l a c e  her  is  upon h e r  area.  Elaine d i s e a s e as that  being  that  live  c o n s i d e r i n g what l i m i t a t i o n s h e r i l l n e s s in this  she  contributing  experiences."  f u l l y accepted  faced with a decision  by  forever."  since  i n t o a c c o u n t when m a k i n g l i f e  moment s h e  life.  " s c a r y and o v e r w h e l m i n g . " She h a s  i n her l i f e  Elaine  i n her  h a s t a k e n o v e r my b o d y ,  go t h r o u g h many "new and d i f f e r e n t  u n c e r t a i n whether  without  v i o l a t i o n that  a huge  me w i t h f e a r and c h a n g e d my l i f e  to  "It  the  filled  with c o l i t i s  "I know I  has been a s s a u l t e d  to  to  fear,  it  factor  The "changes"  of  fear plays  of  f r o m h e r d i s e a s e and how t h i s her f e e l i n g s  of  scared."  "I am s c a r e d o f my own body b e c a u s e some f o r e i g n d i s e a s e . "  about  b r i n g s up f e e l i n g s  h a r d t i m e t a l k i n g a b o u t my c o n d i t i o n  E l a i n e emphasizes  feels  of  experiences  changes  that  h a v e been c a u s e d by h e r  b e i n g v e r y much o u t o f h e r c o n t r o l .  her c o l i t i s  t a k e s away some o f  the  Elaine  power s h e  has  states over  t h e p a t h she wants h e r l i f e aspects  of  control.  way,  decision-making that  Her c o l i t i s  and she  feels  "It  to take.  that  seems t o  is  loss  loss is  that  of  so  little  and she o f t e n  she t a k e s  p l e a s u r e from.  say  effect  effects  of her i l l n e s s  so much h a r d e r .  Elaine  she  t o work i s n ' t  she is  states  that  an e a s y t a s k . " feel  high levels  She t h e n s t a t e s  two most s e r i o u s  side  effects  tasks in  it  will  of c o l i t i s ,  h a v e on t h e r e s t  life  is  the work.  "Going "colitis "I  get  t h e main t h i n g  b e e n h e r l i m i t e d a b i l i t y t o do t h e t h i n g s  effects  that,  ends w i t h s t a t i n g  a c c o m p l i s h m e n t s a t work b e c a u s e  this  One o f  of a n x i e t y a t work",  Elaine  this  that  life  f i n d s now f i n d s more d i f f i c u l t  makes w o r k i n g d i f f i c u l t . "  of  over  activities  Elaine's responsibilities  v e r y a n x i o u s when I ' m a t work and t h a t ' s  lack  to  f i n d s working very hard with having c o l i t i s ,  c a u s e s me t o  some  of having  h a v e become much more l a b o r i o u s and s t r e s s f u l . that  "no"  She g r i e v e s  Along with these g r a t i f y i n g  another negative  tasks  in  and f i n d s t h a t  b e i n g more d i f f i c u l t t o p a r t i c i p a t e i n ,  life  life  command o v e r y o u r own  has t o  these enjoyable a c t i v i t i e s  illness.  are also  control  her  life."  one o f t h e p r i m a r y n e g a t i v e  chronic  are out of  l i m i t s E l a i n e ' s a b i l i t y t o p a r t a k e i n many  enjoyable a c t i v i t i e s ,  the  t h e many  l i m i t many p a r t s o f h e r  b o d y a n d p r e t t y much o v e r y o u r  activities  of  she now f e e l s  she h a s t o a d a p t t o t h i s  seems l i k e t h e r e  Colitis  She t a l k s  thus she  far,  the  have  enjoys  of the  of her l i f e  that  that  and h e r  adverse  options.  Amy  Amy i s  a 2 5 - y e a r - o l d female w i t h C r o h n ' s d i s e a s e .  was d i a g n o s e d a t t h e  age o f  16.  She was r e c e i v i n g  She  anti-  inflammatory drug treatment at the time of her p a r t i c i p a t i o n in this  s t u d y a n d h a d n o t h a d s u r g e r y f o r h e r i l l n e s s . Amy  a p p r a i s e d her h e a l t h at the time of the good.  She d e s c r i b e d how she  didn't  feel  l a c k e d e n e r g y and g e n e r a l l y  " d e v a s t a t e d " when she was t o l d t h a t  l i v e with Crohn's disease  " T h i s was no s i m p l e s i c k n e s s , which i n v o l v e s  lifetime  f o r the r e s t  this  the risk  " D i d I want t o  disease, the  the  treatment." After  endless  She c h o s e  to  l i v e with the  constant list  refuse  of  the  seek out o t h e r forms o f Amy h a d a l o t information treatment.  fear of severe  steroids  effects  steroids  occurrence or of  steroids."  h e r d o c t o r had o f f e r e d and  treatment.  No one seemed t o be a b l e t o d i s e a s e was g o i n g t o  on h e r C r o h n ' s d i s e a s e ,  diagnosed,  go on  of d i f f i c u l t y s e a r c h i n g out  She p o i n t s t o  illness  she was  a possible  side  life,  a g o n i z i n g symptoms o f  the  relevant methods  answer h e r  effect  t h e r e were any o t h e r t r e a t m e n t o p t i o n s steroids.  of her  on h e r c o n d i t i o n and o t h e r p o s s i b l e  a b o u t how t h i s  she w o u l d  was a c h r o n i c  s h e was f a c e d w i t h t h e d e c i s i o n o f w h e t h e r t o or not,  not  well.  Amy was have t o  i n t e r v i e w as  of  questions  her l i f e  and i f  a p a r t from t a k i n g  importance of having i n f o r m a t i o n  " W i t h o u t t h e k n o w l e d g e o f my d i s e a s e  I h a v e no c o n t r o l and I have so  little  c o n t r o l over  what  happens." Amy m e n t i o n s one o f lost  the  loss of  things  she  e n e r g y and g e n e r a l g o o d h e a l t h  now h a s  so much c o n t r o l s i n c e  life,  little  control over,  "I  as  have  C r o h n ' s d i s e a s e h a s t a k e n o v e r my  and I r e a l l y am a n g r y and s a d a b o u t t h i s . "  She  states  that: I  am o n l y now b e g i n n i n g t o u n d e r s t a n d how l i t t l e  truly that  known a b o u t my c o n d i t i o n and t h e I am t o  face  i n my l i f e  that  her to life.  c o n t r o l she  now f e e l s  regulate  over her l i f e  Amy f e e l s  introversion  that  inside  I know, h a s a l o t o f me,  Amy d i s c u s s e s reclusive to  sick  to  other possible  "The s w i t c h  do w i t h a l l t h e  hard to  and h i d e . " One o f is  to  get  of  what i t  my l i f e . "  them. caused  so  d i s e a s e has  since  to anxiety get  sick  i n t r o v e r s i o n has as  a person,  i n to  "I am so p i s s e d  because  off  the  I'm  shell  about  i n t o my body a n d and a t  a  shell  this  rage towards h e r i l l n e s s  become a c t u a l l y d e s p e r a t e  I  happen."  I go i n t o t h i s  forced i t s e l f  her  f o r h e r more  t h e ways she a v o i d s g o i n g  h a s done t o h e r w o r l d ,  "I've  will  about myself  l i k e myself  a n g r y . Amy f e e l s  t h e way t h i s  reasons  "Also I t h i n k the  do w i t h t h e way I f e e l  and i t ' s  going  from  I n e v e r know when I ' m g o i n g t o  lifestyle,  changes  she h a s become v e r y i n t r o v e r t e d  and I h a v e no power o v e r when and where i t  lot  has  become more r e c l u s i v e and e s c a p e somewhat  being diagnosed with Crohn's disease,  have  numerous  are b a s i c a l l y  t o h a p p e n t o me w i t h o u t my a b i l i t y t o The l a c k o f  is  into  same  time genuinely side  effects  e n r a g e d . " She t a r g e t s  as t h e  reasons  p o i n t by p e r c e i v i n g t h a t to put e f f o r t feelings ways,  is  for her anger.  that  this  she has  is  e x p r e s s h e r a n g e r and o t h e r  has towards her C r o h n ' s d i s e a s e stay  its  Amy e n d s a t  t h e one o b j e c t i v e  into trying to  "I want t o  do t h a t are  she  h e r d i s e a s e and  in  healthy  h e a l t h y e m o t i o n a l l y and t h e way I  by t r y i n g t o  e x p r e s s as many o f  i n s i d e me i n a h e a l t h y way,  the  can  emotions  that  including rage."  Teresa  Teresa  is  diagnosed at of  the  age o f  drug treatment  study.  at the  15.  time of her p a r t i c i p a t i o n i n  this  one was an i l e o s t o m y  surgeries  for her  She d e s c r i b e d h e r s u r g e r i e s  as r e l i e v i n g most o f  i n t e r v i e w as  good.  her  symptoms.  Teresa's  doctor  the  With  Teresa  time of  the  illness.  w i t h an e x t e r n a l b a g .  a p p r a i s e d her h e a l t h at the  at  was type  s e c o n d one she was g i v e n an i n t e r n a l b a g .  physical  She  She was n o t r e c e i v i n g any  T e r e s a h a d two d i f f e r e n t  The f i r s t the  a 2 5 - y e a r - o l d female w i t h c o l i t i s .  age  of  s i t u a t i o n began when she 15,  w h i l e a t t e n d i n g g r a d e 10,  t o l d me t h a t ,  supposed t o  started  "it's  do? I t r i e d t o  just  sick  h o w e v e r , "My  i n your head".  ignore i t  feeling  So what was  and c o n t i n u e d on w i t h  I  starting feeling  grade  following  fall."  r e a l l y unhealthy during the  "Feeling she  11 t h e  s i c k was  opinion.  feeling  After  first  scary" for Teresa,  d i d n ' t know why she was  w o r r i e d about  She t h e n  so  feeling  sick  many v i s i t s  so  so  all sick  of  going to  t h e s e t e s t s was new f o r T e r e s a . before  so  "all this  origins  of  the  "The f i g h t  origins  even g e t  the  they  to  agree  of  d o c t o r and how much o f  a sudden,  her.  on i t s  the  struggle to  cause."  on t h e  decide  a "huge s h o c k " me what c a u s e d  it it."  I was d i a g n o s e d w i t h c o l i t i s  on  you  can't  The m e d i c a l for  origins.  received her diagnosis  he c o u l d n ' t e v e n r e a l l y t e l l all  really  i n regards to this  the  a d o c t o r and h a v e  search f o r a cause d i f f i c u l t  first  second  tests,  h a s been t o u g h b e c a u s e  themselves cannot agree  remembers when she second  disease,  makes t h e  see  f o r me, w i t h i n m y s e l f ,  medical people  profession because  of  finds  getting  The w h o l e  was a b i g t h i n g " t o  h e r d i s e a s e and she  difficult,  seek a  She was n e v e r  T e r e s a h a s an " o n g o i n g s t r u g g l e "  11.  when  She was  different  the h o s p i t a l to  grade  especially  she went t o  second d o c t o r diagnosed her with c o l i t i s . experience  month o f  sick.  and s e v e r a l  began  her She  from  the  was,  "then  "One d a y ,  a n d no  one  knew how o r why." T e r e s a remembers " d e s p e r a t i o n " o v e r t h e feeling  i n h e r s t o m a c h c a u s e d by h e r c o l i t i s .  years-old for  the  inside  and s t i l l  pain to me."  p a i n she "Being  c r y i n g and s c r e a m i n g f o r h o u r s  stop."  "It  felt  was 15-  waiting  l i k e my w o r l d was c r u m b l i n g  Teresa's stayed age.  illness  was  s e v e r e from t h e  s e v e r e a l l t h e way t h r o u g h u n t i l  A t 16 s h e was g i v e n an i l e o s t o m y  She h a d t h i s  outset  she was  At 18-years-of-age  she was g i v e n  o f h e r symptoms h a d  Teresa from h e r  lasting  states that  illness,  experience  the  caused  effect  she  is  of  she  s p e n t an a v e r a g e  i n the that  and 19,  hospital  hospital Teresa  experiences  has  left  the  She remembers t h e r e the  hospital  and she  2/3's  she  some o f  t h e most  tpok place  her  life  Her e x p e r i e n c e  in  "intense"  i n the  this  being  hospital.  i n her  being very r e s t r i c t e d  visiting  time  lost  She  experience. hours  "incredibly lonely  Teresa g r i e v e s over the like  that  i m p r e s s i o n on h e r .  importance of  was  1/3  1/2  Teresa states  c e r t a i n hours.  "It  from  of a 4 year p e r i o d of  a lasting  One  in a  between 15  having c o l i t i s .  recalls  spent  visit  family.  her  r e a l l y had a  s a d " b e c a u s e h e r f a m i l y was o n l y a l l o w e d t o  with her  age  affected  She s p e n t anywhere  hospital.  her c o l i t i s  a g a i n emphasizes  has  in that  states that of  that  other year,  because of  that  because of  very highly  every  of  were a t  an i n t e r n a l bag a n d by  times that  to  year,  Teresa  and t h o s e o p e r a t i o n s .  by h e r c o l i t i s  for chronic patients.  years-of-age  still  hospital,  on h e r was t h e  the  bag.  subsided.  hospital 2/3's  19-years-of  bag t h r o u g h o u t h e r 1 6 t h and 1 7 t h y e a r .  and how s h e was c o n s i d e r e d v e r y d i f f e r e n t  19 most  it  and a n e x t e r n a l  remembers how i m p o r t a n t o u t w a r d a p p e a r a n c e s  bag.  and  and  during at  home  I w a s n ' t r e a l l y p a r t o f my  in  family's  home b e c a u s e  I was b a s i c a l l y  living  in  the  hospital." Along w i t h g r i e v i n g over the Teresa  states that  h e r body t h a t body I time.  just I  also  not  feel  want t o  a l l this  colitis,  some s o r t  over the  long periods  the  of  of  for the  l a r g e amount o f  symptom,  "I s t i l l  feel  n e v e r k n o w i n g when I was g o i n g t o g e t  it's  hard to  get  symptom r e l a p s e s caused has a l s o  it.  that  reverberating  from t h e  the  the  fear  disgust  going  it,  all  sick,  and  so  illness  holds  a p p r e h e n s i o n and a n x i e t y  inside,  is  my body  violations." v i o l a t e d by a l l t h e  is  that  had  her c h r o n i c i l l n e s s .  She  pills  She f e e l s  shame  it,  h e r body i s  my b o d y ,  to  because  her body,  c h a r a c t e r i z e d by a f a i r  about myself,  d r u g s I h a d t o pump i n t o Teresa feels  that  about  her  she  way h e r and o t h e r s h a v e had t o t r e a t  humiliation,  and  carries  f e a r was  upon h e r t h a t  programs every y e a r .  " R o l l i n g through l i f e  it."  of  h e r body i n o r d e r t o t r e a t  was on new p i l l of  feels  of  along with uncertainty  created a lot  Teresa also enter  That f e e l i n g  the v i o l a t i o n s  "another p o r t i o n of t h i s  self  d r e a d she  fear of  She f e e l s  of  n e v e r k n o w i n g when she was  illness  r i d of  of  and a n x i e t y .  that  intense."  loss  "When I t h i n k a b o u t my  b a c k . " She l o n g s  grief  around w i t h her because feel  a lot  family,  e s c a p e from a l l t h a t p a i n and f e a r  T e r e s a emphasizes  to  time with  up and r o c k and c r y f o r  h a v e my o l d body and s e l f did  grieves  she had b e f o r e  curl  just  she  lost  amount o f  and a l l  the  and I ' m o n l y now  getting  "manifesting a  distressed  over  p e r s o n " and a p e r s o n t h a t She h a d a h a r d t i m e had a d i f f i c u l t especially  feels  feeling  violated,  safe with her c o l i t i s ,  time understanding t h a t  after  s c a r e d and  my s u r g e r y .  I never  unsafe.  "People  felt  I had been v i o l a t e d  secure  and I  was  scared." When T e r e s a woke up from h e r s u r g e r y and s h e l o n g s c a r down h e r e n t i r e shock.  She s e e s h e r s c a r  experiences. shock  about  "intact."  She f e e l s it."  stomach she  as p l a y i n g a l a r g e  "maimed" and i s  Teresa states that  She f e e l s  that  a lot  with the  surgeries,  affected  her r e l a t i o n s h i p  her scar, to  of  her  illness.  She was  remembers d o i n g w e l l else.  her  in  school.  ahead o f  She d i d n o t  her,  "I f e l t  She s t a t e s t h a t  her c o l i t i s in was  she  a consistent  has  is  greatly always  feeling  intelligent  She  of  strong  enough  "I f e l t  like  of  education It  felt."  "devalued" and She  to  about  school.  I already  well  future  but because  deal with  self-worth.  an " o u t s i d e r . "  because  everything  pursue h i g h e r  d i s e a s e h a s made h e r f e e l  like  time.  h a d any s o r t  "I c o u l d n ' t  d i m i n i s h e d her sense of  do  have  care about d o i n g  o n l y m a k i n g a p p a r e n t how w o r t h l e s s Teresa's  have t o  so why e v e n c a r e  been u n a b l e t o  fashion.  that  I wasn't r e a l l y  she  in  longer  quit high school  1 2 at  she  h a v e much c o n t r o l o v e r my f u t u r e school."  no  life  body.  couldn't  believe that  is  "partly  1 2 and f a i l i n g  in English she  she  in  i n her  and how t h e s e t h i n g s  i n grade  Teresa states that  part  still  the  feeling  her experiences  When T e r e s a was s e v e n t e e n she of  remembers  saw  has  remembers a loser  and  how h a r d t h a t that  made my l i f e . "  She s t a t e d  a n y b o d y w o u l d want t o h e a r s t o r i e s  experiences  i n l i v i n g with c o l i t i s .  r e m e m b e r i n g how much e a s i e r colitis.  She l o n g s  body a n d h e a l t h y  life  that  s h e was  stunned  about h e r  T e r e s a ends by  was b e f o r e  developing  f o r h e r p r e v i o u s w o r l d and h e r h e a l t h y  view of s e l f  before  colitis.  Helen  Helen i s  a 23-year-old  female  with c o l i t i s .  She was r e c e i v i n g  She was  diagnosed  a t t h e age o f 1 9 .  treatment  a t the time o f her p a r t i c i p a t i o n i n t h i s  H e l e n had not had s u r g e r y f o r her i l l n e s s .  steroid study.  Helen appraised  h e r h e a l t h a t t h e time o f the i n t e r v i e w as not good. described herself  as " v e r y low on e n e r g y "  She  and f e e l i n g  "sick."  Helen's her  family.  situation  s t a r t e d when she was on h o l i d a y s  She was 1 9 - y e a r s - o l d  " b l o o d i n h e r b o w e l movements."  and began h a v i n g a l o t o f Her f a m i l y took h e r t o a  d o c t o r a n d he d i a g n o s e d h e r w i t h c o l i t i s . her  life  became a l o t more d i f f i c u l t  H e l e n had never heard of c o l i t i s diagnosis, thing." then  "I d i d n ' t know what  " I t was an e n t i r e l y  with  Helen states  from t h a t prior  moment o n .  t o h e r own  i t was and t h a t  unknown i l l n e s s "  came a l l t h e unknown t e s t s . " The t e s t  that  was a b i g  t o h e r , "and  experience  for  h e r was  " r e a l l y s c a r y " because  anything  l i k e that  p r o c e d u r e s and t h e y  I was  s c a r e d her because  as  was  she  a l l and t h e y  were s a y i n g " t h i s  steroids. positive  because  that  feel  t h e y were t e l l i n g she was g o i n g t o  her  be  that  is  what's  life"  t h a t had c o l i t i s  g o i n g t o happen t o  you,  and be on s t e r o i d s  and a l l t h i s  other  experience with the  t h e y made h e r f e e l  a n x i o u s " as t h e  increased,  of was  However,  l e n g t h o f t i m e she was  very good.  It  for  stuff.  steroids  better.  "I was on s t e r o i d s  d i d n ' t make me f e e l  and  they  t r e a t m e n t was t h r o u g h t h e u s e  Her i n i t i a l  "began t o steroids  of your first  same  s c a r e d me b e c a u s e  y o u ' r e g o i n g t o have s u r g e r i e s  Helen's  the  "scary" f o r her to hear a l l  i n a room w i t h two o t h e r s  rest  other  indicates:  been t h r o u g h i t  the  some  and been t h r o u g h many o f  of h o r r i b l e things" that  going through. It information  "had n e v e r gone t h r o u g h  before." Helen t a l k e d to  p e o p l e t h a t had c o l i t i s  "about a l o t  she  she on  for a long time, felt  l i k e they  so  were  m a k i n g me r e a l l y w e a k . " Helen's "was t i r e d  "energy  a l l the  difficult  task."  part-time  job,  l e v e l s began t o  t i m e and g e t t i n g  decrease to  rapidly."  s c h o o l was a  She w o u l d a v o i d e a t i n g a t  s c h o o l and a t  i n o r d e r t o p r e v e n t any i l l n e s s  symptoms,  s h e was n o t p r o v i d i n g h e r body w i t h t h e n u t r i t i o n to  keep her s t r e n g t h up.  school  "I d i d n o t want t o  o r a t work and c a u s e  She  get  she  sick  an u n c o m f o r t a b l e s c e n e so  her so  needed at that's  why I n e v e r generally  ate."  d i d n ' t eat  Helen  at  "found the  b e c a u s e she always  H e l e n was  a l l during the  regular winter  d i d n ' t h a v e much e n e r g y  having to  summer b e c a u s e she  term.  had t o  up w i t h h e r p r o g r a m o f  to  take  time  again  home b e c a u s e she home,  but  from s c h o o l  competitive of  staying  program,  it  "felt  was n o t  get  in,  b u t she  in it,  "At t h a t  I thought  it  was  so d i f f i c u l t  her c o l i t i s . not  seem t o Helen's  However, drugs."  she  to  However,  was  a chances  w o u l d be h a r d e r  high school,  it  a  competitive  so  hate school" while  The m e d i c a t i o n she was t a k i n g a t be  school."  lose her  in a  o u t now i t  with  at  get  s h o u l d have t a k e n  d i d n ' t want t o  continue  not  Helen d i d  sick  She "began t o  money  still  get  in right after  w o u l d be more d i f f i c u l t . "  She was  okay t o  I was  keep  started  was o k a y t o  time,  to  school,  "It  she  was  difficult  safe."  i'f I g e t  because I got  She  be  summer  d i d n ' t because i t  p r o g r a m and she  so  it.  courses  She t h e n  time.  L o o k i n g b a c k now H e l e n t h i n k s break  into  difficult"  c o u l d make enough  i n September.  eat  at  she  tuition.  v e r y much t h r o u g h o u t t h i s  sick  put  Along with  eating at  term  summer s c h o o l  studies.  pay f o r h e r next f a l l ' s full  school to  she  day.  She t h e n h a d a  a l s o t r y i n g t o work so  university  because  a s k f o r a s s i g n m e n t s and exams t o  d e f e r r e d through out the  H e l e n was  low on e n e r g y  it because  dealing that  with  time  did  helping.  doctor then "became  switched  sick  She s t a t e d t h a t  of  the  steroid  medications.  t a k i n g so many steroids  different  were n o t  to  good f o r  her  and she  "was  steroids,  f e a r f u l of  I felt  the  side  effects  r e a l l y bad because  f o r me a n d I w o u l d r e a d up on i t medicine Helen took attempted  to  of  them",  I knew t h i s  and i t  for her i l l n e s s  was  felt  s e e k o u t o t h e r means o f  "I was  is  not  on  good  s c a r y . " The  "wrong," so  she  c o n t r o l l i n g her  colitis. Helen t r i e d a naturopathic doctor. p u t h e r on d i d n o t because there  she  seem t o h e l p .  c o u l d "barely eat  were more r e s t r i c t i o n s  n a t u r o p a t h i c way j u s t made t h e  decision  to  wasn't  However,  She f o u n d i t  a n y t h i n g as  it  the  diet  "frustrating" was" and  p u t on h e r d i e t .  then  The  g o i n g t o work f o r H e l e n so  go b a c k t o u s i n g t h e  he  new  she  steroid  medication. Helen doesn't  know i f  medication a l l her l i f e . scared that have t o  she  "will  she  is  "The f u t u r e s c a r e s  consistently  be on m a j o r m e d i c a t i o n s . "  h a s b e e n on s e v e r a l  going to  different  not It  feel  scares  stay  me." She  is  well  always  and  7 because  d r u g s and h a s n ' t  r e m i s s i o n t h r o u g h t h e whole p e r i o d o f  on  gone  time t h a t  she  she  into has  had  colitis. Helen states that colitis thinking  is  the  not being able  about  it.  It  is  "hinders" her l i f e  illness  to  She f e e l s  b a t h r o o m s a r e and a l w a y s w o r r y a b o u t where  hardest  living  function during the  day  anxious  the  has t o  there  t h i n g about  a b o u t where  with without  be t h i n k i n g a b o u t t h a t ,  a washroom,  that  and h e r a b i l i t y t o  is  a big  thing."  be s p o n t a n e o u s .  " d i s r u p t s " h e r day and any r o u t i n e s c h e d u l e  "The  she  Her  attempts  to  set  whole day a t  up.  school.  "It  c a u s e s a b i g p r o b l e m t h r o u g h o u t my  It  has c h a n g e d t h e way I  look at  each  day. " Helen states that illness is  is  has c h a n g e d h e r l i f e .  " d i r e c t i n g " her l i f e ,  a huge h a s s l e  can j u s t  colitis  and sometimes  "Dealing with t h i s  it  s t e p i n and t a k e c o n t r o l  p i s s e s me o f f of  her to  deal with,  Physically  any p l a n s t h a t  f o r a l l the  Emotionally,  her i l l n e s s  "Emotionally  it  sometimes. can't  can get  y o u . " "It  it  in Helen's l i f e  just  can't  loss  do i t  Helen speaks chronic  illness,  about y o u r whole t h e way s h e v i e w s  forced  screws  you up,  a hard  task.  now i s  things  get  tired  of  it  that  I used  in sports  I  to." because  c o n t i n u e w i t h was a huge l o s s t o  her.  o f h e r b o d y ' s a b i l i t y t o p e r f o r m . . "I  anymore. My body w o n ' t of the a f f e c t s  let  me."  o f h a v i n g a body w i t h a  " H a v i n g a s i c k body makes y o u f e e l self."  Having c o l i t i s  herself,  much f o r t h e w o r s t ,  never  sick."  up h e r l o v e o f b e i n g a c t i v e  the  has  of  I ' m t i r e d most o f t h e t i m e b e c a u s e  was so d i f f i c u l t t o  She g r i e v e s  just  more d i f f i c u l t and I j u s t  Actually  give  deal  h a s been " o v e r w h e l m i n g " ,  r e a l l y do any o f t h e a c t i v e  Having to  it  I may  has been " h o r r e n d o u s . "  k n o w i n g when y o u a r e g o i n g t o be  "Everything is  changes  it  b o t h p h y s i c a l and e m o t i o n a l .  Helen's disease  Everything  disease  t h e way  h a v e a r r a n g e d i n my d a y . " H e l e n e x p r e s s e s a g r e a t anger towards her disease  Her  since  "How I see I've  negatively  bad influences  m y s e l f has changed  had c o l i t i s . "  She h a s  so  "felt  huge c h a n g e s " her  self.  i n h e r body and t h e way she  "I've  c h a n g e d so much,  me s c a r e d and t h a t  s e e s h e r body a n d  I ' m weaker a n d t h a t  scared f e e l i n g  seems t o w e a s e l  makes  its  way  i n t o a l l a r e a s o f my l i f e . " Helen experiences prefers  to  safe with. "fear  of  f e a r w i t h m e e t i n g new p e o p l e  stay with a l l the people that "This anxiety  new s o c i a l  is  a hard t h i n g to  i n unknown s i t u a t i o n s .  she  is  often  f r i g h t e n e d of  she  is  feeling  d e a l w i t h . " Her  new s i t u a t i o n s ,  especially  t a l k i n g a b o u t how when she  s t a t e s t h a t when she was h e a l t h y t h i s when s h e ' s it  feeling well feel  about  B u t now H e l e n f i n d s  s h e w a n t s t o be a r o u n d p e o p l e s h e f e e l s  situation,  she  that  when  sick.  Helen continues  However,  feels  She remembers n o t e v e n t h i n k i n g  being afraid  feeling  symptoms and she  and I ' m a r o u n d p e o p l e  is  feeling  safe with.  n e e d was n e v e r  makes h e r a n x i o u s and s c a r e d ,  is  She  there.  i n a new  "When I ' m n o t  I d o n ' t know v e r y w e l l  I  uncomfortable." Helen proceeds to t e l l  "more c o m f o r t a b l e , wants that  to  be w i t h p e o p l e  some c o n t r o l  is  she  of  familiar your  feels  at  searches  when she  is  feeling  out  to  She  find  illness  states  methods  of  symptoms,  I need t o have a v e r y c o n t r o l l e d ,  environment because  feelings  ease w i t h .  h e r way o f t r y i n g  When I ' m n o t f e e l i n g w e l l safe,  o f t h e way she  l e s s a n x i e t y p r o d u c i n g e n v i r o n m e n t s . " She  she t h i n k s t h i s  gaining  lot  she knows a n d  s i t u a t i o n s " was n o t t h e r e b e f o r e  developed her disease.  sick  and  the disease takes  away a  o f power when y o u a r e s i c k . " H e l e n  feels  more i n c o n t r o l when s u r r o u n d e d w i t h p e o p l e  she  knows  well. Helen f e e l s knows. she  less  a n x i o u s when she  She s t a t e s t h a t ,  gets  at times,  is  since  with people  she h a s h a d  " s c a r e d and a n x i o u s a b o u t d i f f e r e n t  no r e a s o n . " She b e l i e v e s feel  a l l this  like  that,  new f e a r ,  that's  that her i l l n e s s  colitis,  situations  for  has caused h e r  " T h i s t h i n g has caused you t o  how I see  d e a l of  she  become  i t . " H e l e n ends by s t a t i n g  "I f e e l  a great  anger about a l l t h i s  colitis  c a u s e s me t o have t o d e a l w i t h i n my  anxiety  to  that,  that  life."  Michael  Michael  is  a 2 5 - y e a r - o l d male w i t h C r o h n ' s d i s e a s e .  was d i a g n o s e d a t  the  age o f  inflammatory drug treatment in this  study.  for his  illness.  interviews  health at  the  He d e s c r i b e d h i m s e l f  and f e e l i n g  " v e r y low on  s i t u a t i o n began when he f i r s t  a b d o m i n a l p a i n s . " He f e l t He was u n a b l e t o  "I was a l o n e  anti-  at the time of h i s p a r t i c i p a t i o n  He a p p r a i s e d h i s  with abdominal pain"  pains."  He was r e c e i v i n g  M i c h a e l had t h r e e b o w e l r e s e c t i o n  as n o t good.  Michael's  17.  He  as  others  i n my p a i n and s u f f e r i n g . "  time of  the  "suffering  energy."  felt  "very s c a r e d about a l l explain to  surgeries  "extreme these  how b a d he  felt,  M i c h a e l wondered why t h i s was find  I being given a l l this the  answer t o t h a t  symptoms,  was h a p p e n i n g t o h i m , "Why  p a i n ? " He h a s n e v e r b e e n a b l e  question.  When he f i r s t  no one knew what was wrong and h i s  to  began h a v i n g  life  began  to  "change d r a s t i c a l l y . " One o f his  the  aspects of M i c h a e l ' s l i f e  p a r t i c i p a t i o n i n enjoyable  much i n v o l v e d i n s p o r t s , evaluated himself began t o  energy  especially  as  it,  "very  b a s k e t b a l l . " He  a huge p a r t o f who I was b e c a u s e  and my a b i l i t y t o do i t  anymore."  sports  that  I had no e n e r g y t o  D e a l i n g w i t h p a i n consumed much o f  his  to p a r t i c i p a t e in enjoyable felt  very alone because  enjoyed, I  e n e r g y and  his  "I was a  lost  society  anymore."  "I was no l o n g e r a b a s k e t b a l l p l a y e r and I  I c o u l d n ' t b e l o n g on t h e s e  know what my i d e n t i t y was anymore b e s i d e s b e i n g a  Michael  "retreated" into his  else  activities.  in his pain.  "no l o n g e r o u t g o i n g ,  was  team member."  member o f  p e r s o n . " He was  He was  do a n y t h i n g  b a s k e t b a l l and I became a f o r g o t t e n  Michael  he  of having to deal with a l l the pain  i n my s t o m a c h ,  saw pretty  symptoms grew M i c h a e l ' s e n e r g y d e c r e a s e d .  I guess because  especially  I was  he  a sudden I was r o b b e d o f my  no l o n g e r a b l e t o p a r t i c i p a t e i n t h e  ability  a s he was  was  a s a p r e t t y good b a s k e t b a l l p l a y e r b u t  and t h e n a l l o f  As t h e  feeling  changed  have d i f f i c u l t y p a r t i c i p a t i n g , " I ' l l admit I  basketball good a t  activities  that  social,  "own w o r l d " ,  teams didn't  sick  and p o p u l a r . "  "I was a l o n e . "  "I  felt  s a d and was s u f f e r i n g a g r e a t d e a l b e c a u s e  know what t o After (ie.  loss  months,  s u f f e r i n g w i t h p a i n and v a r i o u s o t h e r of  appetite,  gastroenterologist. specialist.  weight,  and e n e r g y )  "My d o c t o r s e n t me t o  I was s o r t o f a f r a i d  for  because  symptoms  several  a  a stomach he p u t me t h r o u g h  b a r r a g e o f t e s t s . " T h i s was a " s c a r y " t h i n g  h i m a s he h a d n e v e r s p e n t much t i m e  didn't  do."  M i c h a e l ' s f a m i l y d o c t o r s e n t him t o  q u i t e the  I  so much t i m e w i t h d o c t o r s a n d  i n t h e h o s p i t a l . The g a s t r o e n t e r o l o g i s t  him w i t h C r o h n ' s d i s e a s e .  for  diagnosed  "He a c t u a l l y made q u i t e I was.  a quick  diagnosis  I suppose and so t h e r e  a name t o  a l l t h e s e v a r i o u s symptoms I was e x p e r i e n c i n g . "  M i c h a e l n e v e r knows when he i s "attack" of truly  symptoms and be r u s h e d t o t h e h o s p i t a l ,  are attacks.  They happen so q u i c k l y .  b o d y a n d k e e p s me from l i v i n g  thus  more c o n t r o l  over h i s  It  My i l l n e s s  body, h i s  c o n t r o l s my l i f e ,  my m e d i c a t i o n , b u t i t amazing I ' v e  that Michael  control  still  and h i s  longs  life  but  f o r him:  I w a t c h what I e a t , m o n o p o l i z e s my l i f e . long because  I  g o i n g t o t a k e o v e r and I am g o i n g  h a v e t o phone i n  little  completely  h a s d e s t r o y e d my  illness  k e p t one j o b f o r so  know when i t ' s  I feel  "They  a regular l i f e . " Michael  f a r n o t h i n g h a s been s u c c e s s f u l  The f a c t  I c o u l d put  g o i n g t o have an  a t t a c k e d a n d v i o l a t e d by my i l l n e s s .  for  At least  so  I  take  It's never to  sick. feels  over h i s  i l l a lot  of the  symptoms makes i t  t i m e and has  d i f f i c u l t f o r him  to  feel  good a b o u t h i m s e l f ,  inferior,  my d i g n i t y has been  w i t h no c o n t r o l o v e r t h e i r his  " C r o h n ' s d i s e a s e makes me  illness  specifically  bodies  causing  e s t e e m he a l s o p o i n t s  to  h a v i n g a major e f f e c t  on h i s  knows when he  is  lost.  his  going to  I'm j u s t  or t h e i r  life"  a decrease  experiences  person  Along  in his  i n the  self-regard.  end up i n t h e  a sick  feel  with  self-  hospital  Michael  hospital  as  never as  he  indicates: I never  know when I am g o i n g t o  disease.  I c o u l d end up i n t h e  they  treat  you f e e l Michael effects  of  like  wife  has  a helpless  hates the  to  he  their  woman t h a t  I  is  love."  hospital  kid. i n the  the worst  being  o f my  tomorrow a n d  hospital things  i n the  hospital  He h a t e s t h e  and  the  about and  pain that  is  i n the hates  s p e n d so many n i g h t s  his  away f r o m h i m  hospital. "hearing pathetic  stories  from  other  w i t h C r o h n ' s d i s e a s e . " O t h e r s have t o l d him partners  illness,  couldn't  "I h e a r t h a t  *my w i f e  He h e a r s  because of  Crohn's disease.  stories  that  they  life.  left  me b e c a u s e o f my  couldn't  If  he s t a t e s t h a t  doing anything with his  that  cope w i t h them h a v i n g a c h r o n i c  disease'."  these  hospital  symptoms  go t h r o u g h w i t h h a v i n g a p a r t n e r w i t h C r o h n ' s  Michael people  stays  "I t h i n k one o f  d i s e a s e and h a v i n g t o while  little  lengthy  chronic illness  away f r o m t h e  the  y o u i n s u c h a d e g r a d i n g way i n t h e  this.  having t h i s  feel  be p r o p e r  M i c h a e l was t o  he w o u l d be However,  left  parents  believe  all  incapable  he d o e s n o t  give  of  credence to believes enjoy to  a l l these s t o r i e s ,  that  life  even  l i v i n g with a chronic i l l n e s s ,  and a t  r e l a t i o n s h i p s and l i v e  H o w e v e r , he s t i l l  times  is  t h a t he f e e l s  his  t h a t he  illness.  life  angry about h i s  also  feels  can  is  trying  to  the  life  often  Along  s c a r e d . H o w e v e r , he  with  states  l e s s a l o n e t h e n what he d i d when he f i r s t  diagnosed because  Michael  feels  his  " d e b i l i t a t e d by t h e s e f e e l i n g s . "  being angry Michael  others  one  and have h e a l t h y r e l a t i o n s h i p s . M i c h a e l  have f u l f i l l i n g  fullest.  " T h a t ' s n o t t r u e . " He  he s h a r e s more a b o u t h i s  illness  was  with  trusts.  is  beginning to  He t e l l s  s h a r e more w i t h o t h e r s  f r i e n d s now why he c a n ' t  eat  about certain  foods  o r why he c a n ' t p a r t i c i p a t e i n v a r i o u s a c t i v i t i e s ,  feels  good b e i n g honest  a b o u t my h e a l t h " .  he must " a c c e p t " h i m s e l f and h i s  illness  He b e l i e v e s before  a c c e p t h i m a n d one o f t h e ways he c a n do t h i s more o p e n w i t h f r i e n d s a b o u t h i s Michael accepting the  rest  of  s t a t e s t h a t he i s the  of h i s  It's  he w i l l  so  by b e i n g  disease.  s l o w l y b e c o m i n g more l i v e with Crohn's disease  a s c a r y word t h a t  for  chronic  I g u e s s t h a t means p r e t t y much f o r my e n t i r e  and I am s t a r t i n g t o  accept that.  one t h i n g b u t a l l t h e e m o t i o n s think  can  life:  a chronic illness,  thing, life  fact  that  others  is  "It  about t h a t ,  overwhelming  especially  sometimes.  that  fear,  Acceptance  come up when I it  c a n be  is  Michael fear he  ends by s t a t i n g  about having to  attempts to  future  but  live  just  that  live  he s t i l l  a great  with Crohn's disease  one day a t  have t o  feels  live  a time.  deal  forever  "Scared about  of  but  the  life."  Ted  Ted  is  a 2 5 - y e a r - o l d male w i t h c o l i t i s .  diagnosed  at  the  age  treatment  at  the  time  Ted had not health  at  of of  the  was t o l d t h a t  as  his  his  sickness that  illness  that  had f o r h i s  He a p p r a i s e d  not good. deal  of  actually  his  He  pain."  b e g a n when  with c o l i t i s  for  affliction,  be w i t h me f o r  was d e t e r m i n e d t h a t  was a f f e c t i n g  this  that  " a p p a l l e d " by t h e  seemed t o lack of  c o n d i t i o n as he was so  by some  the from  tract  I  was  continuous  never  stop."  compassion  "scared of  was  I had a  my i n t e s t i n a l  and p u t t h r o u g h a  he  the  "I was p u t t h r o u g h so much r i g h t  degrading t e s t s  T e d was  live  was g o i n g t o  i m m e d i a t e l y p u t on s t e r o i d s barrage of  situation  study.  "My body had been v i o l a t e d  word c h r o n i c . " "When i t  chronic  as  " T h i s was no i n n o c e n t  r e m a i n d e r o f my l i f e . " the  illness.  a "great  he w o u l d have t o  life,  steroid  participation in this  interview  feeling  an i n c u r a b l e c o n d i t i o n . " foreign  his  time of the  Ted b e l i e v e s t h a t  of  He was r e c e i v i n g  had s u r g e r y f o r h i s  described himself  rest  18.  He was  this  doctors unknown  illness  and t h e s e demeaning e x a m i n a t i o n s . "  emotion  that  helped every  to  he  felt  calm these  test  explained  room t h a t  had t a k e n o v e r h i s fears,  I was w h e e l e d  t o me what was a c t u a l l y  states that  a l l that  anxiety  made d e a l i n g w i t h e v e r y d a y illness this  makes me f e e l  world",  frightened  scared,  and f r a g i l e  difficult  his  b u t no one  feeling  I'll  deal with t h i s  continuous  strength facing He f e l t and i s  not  of  felt  in his  abuse if  and  life: pain,  of  my body  I have  the  I h a v e come v e r y c l o s e  own m o r t a l i t y a t  make m a j o r a l t e r a t i o n s  He s p e a k s o f  his  fear  confront  makes me wonder  I feel  faced his  forced to  life.  cope.  and  to  death.  he h a s  his  I  to  so  feelings."  he now f a c e s  and t h e  with  n e v e r make i t ,  social  it  him and  deal  having to  from drug t h e r a p y ,  o n . " He  weak and u n a b l e t o for  of  ever  be g o i n g  When f a c e d w i t h a f u t u r e o f inhibitions,  fear  "This  a b i l i t y to that  disease,  one  very d i f f i c u l t ,  and I f i g u r e  experiences  an  b u t no  p i l e d up i n s i d e  understand these  Ted q u e s t i o n s  this  going to  just  life  life  into,  "At times I hate myself  n o b o d y seems t o  the  "Fear of  F e a r was  these a l t e r a t i o n s  a v e r y young  i n the as  way he  ones t h a t  age lives were  choosing: like  something  I had l o s t  complete  c o n t r o l of  f o r e i g n had t a k e n o v e r and I was  all  I c a n do i s  see  if  t r y to  I c a n cope  change  better.  some t h i n g s  my  life,  scared  and  i n my l i f e  The c h a n g e s I h a v e h a d  to  to  make h a v e c o s t me a g r e a t life  since  Ted p o i n t s  scared of  huge  I knew i t  what  I was  become  about t o  the  in feelings faced with,  very depressed  target  emphasizing with his day t o  for his  that  the  anger.  i n my  "My w h o l e  and a t  the  illness  At t h i s  of  with." anxiety  he a l s o  over  states  same t i m e and i t s  all  that,  feeling  side  effects  p o i n t Ted ends by  o n l y t h i n g he c a n do i s  angry f e e l i n g s  day  faced.  be c o n f r o n t e d  v e r y a n g r y . " He f o c u s e s on t h e as  a lot  was gone and I was v e r y down and v e r y  unknown c h a n g e s T e d i s  "I've  lost  colitis.  l o s s e s he h a s  A l o n g w i t h an i n c r e a s e the  I have  being diagnosed with  out the  e x i s t e n c e as  deal.  to  try to  deal  i n a p p r o p r i a t e ways and "cope  on a  basis."  Nancy  Nancy i s  a 23-year-old  diagnosed  at  the  age  of  treatment  at  the  time  18.  of  female  with c o l i t i s .  She was r e c e i v i n g  herself  at as  the  of  feel  sick.  of  "suffering  Nancy's year  time  situation  university.  the  interview  from a f a i r  bit  began a t t h e  This  is  when s h e  She remembers b e i n g  as  study.  She a p p r a i s e d  poor. of  was  steroid  her p a r t i c i p a t i o n i n t h i s  Nancy h a d n o t had s u r g e r y f o r h e r i l l n e s s . health  She  She  sicky  beginning of  her  described feelings."  her  first  i n i t i a l l y started  to  "very s c a r e d " because she  did  n o t know what was wrong w i t h h e r . her that  there  seek a second  was n o t h i n g wrong w i t h h e r , o p i n i o n and t h e  opinion diagnosed to  a full  she  had never heard  consuming f e a r . "  However,  with  that  find  out  relieved had t h e  colitis  there  t h e r e was  A l t h o u g h she was that  she  decided  sick  second  for  and w i t h an  to  close  illness  of.  concerning her diagnosis  with her.  she  Nancy was  being diagnosed,  Nancy h a d n e v e r h e a r d o f  f i n d i n g out  so  told  d o c t o r who s u p p l i e d t h e  her with c o l i t i s .  year before  knowledge  Her r e g u l a r d o c t o r  added t o  lack  her  "already  was some s e n s e o f something  of all  relief  medically  wrong  s c a r e d she was a l s o c o m f o r t e d  "was n o t  t o know t h a t  and t h i s  just  there  going  crazy",  and she  were o t h e r p e o p l e  same d i s e a s e who she  could talk  to  out  about  to  was  there  who  her  feelings. Nancy's h o s p i t a l emotions,  primarily  especially hospital  scared,  her  experience  life  while  me and o u t stories for  and i t  feeling  the  do w i t h b e i n g  and v i o l a t i n g "  stay.  "out o f  hospital,  and t h e s e s t o r i e s  feelings  of  in  tests."  procedures  These v i o l a t i n g t e s t s c o n t r o l " of  caused  h e r body and  " E v e r y t h i n g was v e r y new  f r o m o l d e r women who had been  increasing  of  had t o  o f my c o n t r o l . " W h i l e i n t h e  some t i m e  deal  emotional,  undergo a l l t h e s e d i f f e r e n t  hospital  i n the  included a great  "I remember b e i n g q u i t e  many " s t r a n g e  during her f i r s t her to  fear,  and h a v i n g t o  She e x p e r i e n c e d  experiences  Nancy h e a r d  l i v i n g with  added t o  being out of  hospital  her  control.  to  colitis  already Along  with  increased  feelings  of b e i n g out of  increased her f e e l i n g s  of  fear.  control,  She a l s o  their  saw c o n c e r n i n h e r  p a r e n t s c a u s e d by what was g o i n g o n , w h i c h a g a i n h e r own a n x i e t y , parents'  "Also,  seeing  look of  c o u l d about c o l i t i s through knowledge. surprised to  find  to  find  i n hopes t o  of  a l l the  alleviate  being scared."  i n f o r m a t i o n she some o f  that the  information the  alleviate  N a n c y ' s f e a r s were n o t Nancy r e a l i z e s  rest  of  her l i f e  deal  of  fear  affliction. really  was  and t h i s  she w i l l  fast  during the about i t  always going t o  H o w e v e r , many  first as  be a p a r t  great  phases  of  her  being a  lifetime  o f me.  I'm never  really  me." that c o l i t i s  s h e hangs o n t o t h e hope t h a t  is  she w i l l  o f p e o p l e t h e y know who a r e b e t t e r  her t h a t ,  the  o f deep d e s p a i r .  a chronic at  i n t o r e m i s s i o n . H e r p a r e n t s have l i f t e d h e r h o p e s stories  for  causes a  be t r u l y h e a l t h y a g a i n and t h a t  A l t h o u g h Nancy r e c o g n i z e s illness,  instances.  have c o l i t i s  realization also  she d i d not t h i n k "It's  the  lessened.  i n her along with f e e l i n g s  going to  depresses  some o f h e r f e a r .  now t h a t  T h i n g s were h a p p e n i n g so that  was  i n t h e s e m e d i c a l b r o c h u r e s . The symptoms  This d i d help to  illness  fears  o l d e r women were  women were t a l k i n g a b o u t o n l y h a p p e n e d i n r a r e  of  her  She r e a d many p a m p h l e t s and she  a b o u t what was g o i n g t o happen t o h e r  contradicted  elevated  a l a r m on my  f a c e s d i d n ' t h e l p my own f e e l i n g s  Nancy went on a q u e s t  giving  the  stories  if  o n l y she  took b e t t e r  now.  least with  They  care of h e r s e l f  go  tell  she would  be  in remission.  "Although t h i s  a great  d e a l of g u i l t  deal  effort  of  able to  p r o v i d e s hope i t  and p r e s s u r e . " She h a s s p e n t  i n r e s e a r c h i n g ways  take better  also  causes  a  great  i n w h i c h she m i g h t  care of h e r s e l f .  be  However, n o t h i n g h a s  b e e n a b l e t o h e l p Nancy i n t o r e m i s s i o n . A l t h o u g h t h e k n o w l e d g e Nancy h a s g a i n e d h a s n o t her  into remission,  gathered  is  she f e e l s  a l l o w i n g her to  her decisions  i n her l i f e .  regarding her c o l i t i s allows  her t h i s  is  that the  She s t a t e s t h a t t h i s  increased control.  her  She s t a t e s t h a t t h i s  little  is  her weight little fact  effect  of  she  over. lost  colitis.  convincing herself control  o v e r some o f feeling  affects  of  She t r i e d  a lot  to  knowledge  is  colitis."  also  symptoms o f  increased generally,  of t h i s  as  the t h i n g s  convince h e r s e l f  she knew t h a t t h e was a s i g n o f  N a n c y s t a t e s t h a t good h e a l t h i s again.  colitis  so  she  "invaded" i t .  to  feels  that  the side  in lack  of  ill-health.  important to  She l o n g s  so  Nancy p o i n t s  However, she was u n s u c c e s s f u l  and she may n e v e r h a v e i t  it  o f w e i g h t m i g h t be a p o s i t i v e  over her weight-loss  body she h a d b e f o r e  the  of  "there  and h e r body image as two o f  control  that  over the  over  M e d i c a t i o n and d i e t  i m p o r t a n t t o her because  control  has  very important t o her because  h a v e more c o n t r o l  control  i n f o r m a t i o n she  s l o w l y t a k e more c o n t r o l  allow her to illness.  helped  for the  her  healthy  She f e e l s  her  h e a l t h y body h a s been " r a p e d " by h e r d i s e a s e a n d t h e n "devastated  by t h e t e s t s "  she  is  put through because  of  her  disease. has  Nancy a l s o  to take  into  feels  "violation  from a l l t h e d r u g s " s h e  h e r body t o t r y and s t a b i l i z e  her d i s e a s e  Nancy g r i e v e s o v e r t h e l o s s o f h e r body b e f o r e She h a s h a d "a c o m p l e t e longer  see h e r s e l f  body image c h a n g e . "  as a " h e a l t h y ,  woman." Nancy s e e s h e r s e l f She s t a t e s t h a t , of  the hardest  it  lowers  this  "this  view  makes me v e r y  regularly. her  identity  a s weak a n d l a z y a n d  She w a n t s t o b e  She m i s s e s b e i n g a b l e  to  usually  I just  and t h i s  haven't  an i m p o r t a n t  restricted  been a b l e  makes me f e e l  like  after  a loser  o f f of school  this  alters  this  t h e n comes a l o w e r i n g o f h e r s e l f - e s t e e m .  h e r chances  Nancy s t a t e s t h a t  when h e r i l l n e s s  encounters  time  fine."  source  t o d o my b e s t  take  but inside  to  because  I t ' s h a r d f o r me t o g e t good g r a d e s  I h a v e t o m i s s s o m u c h . " She f r e q u e n t l y  know t h a t  exercise  self.  f o r N a n c y , was g r e a t l y  g e t anywhere.  outside,  i s one  b e c a u s e o f t h e way  "body s t r e n g t h . "  accomplishment,  colitis,  university,  can't  again.  a n d image o f  self-esteem  developing at  and u n h e a l t h y . "  o f h e r body a n d h e r s e l f  "I s e e m y s e l f  young  Nancy s e e s a l l t h e s e l o s s e s a s "a b i g blow"  Scholastic of  She c a n no  depressed."  Nancy m i s s e s h e r l o s t a good a t h l e t e  faced  aspects of having c o l i t i s "  her self-worth.  colitis.  vibrant 23-year-old  as "puffy  v  of a t t a i n i n g  "ugly,  e v e n t h o u g h I may l o o k f i n e  She s t a t e s t h a t  these feelings  when  having  to  a c t s up a n d i n t u r n  a high standard.  s h e may l o o k okay t o p e o p l e  she f e e l s  I  dirty  from t h e  and s i c k . "  my i n s i d e s  With  "I  are not  about h e r s e l f  have  changed her times  life  when she  positively  " d r a s t i c a l l y . " When t h e r e  feels  healthier,  since  she h a s  positives  difficult  that  she h a s  situation.  takes things life has  symptoms o f  she  and how t h e y  get  "colitis  get  longer  attitude  in she  a r e g o i n g t o make  because  is  she  is  sick  sick.  makes me so  each  moment faced  with  angry." "Life  is  y o u n e v e r know when y o u m i g h t  be  a r e now h a r d e r ,  an e a s y t a s k .  school,  work,  play,  you  colitis,  You n e v e r know when y o u  and t h a t makes y o u w o r r y . " She  states  no m a t t e r  v e r y a n x i o u s when I ' m a t w o r k . What i f This also  the  now so much h a r d e r .  causes high l e v e l s of anxiety  "I g e t  to  about  Nancy f i n d s w o r k i n g v e r y h a r d w i t h h a v i n g  are going to  was t o  no  things  now w o r r i e s  new a n x i e t i e s  e a s y anymore and i t  So many t h i n g s  you a r e " ,  kind  her p r i o r i t i e s  opposed t o w o r r y i n g about t h e  " G o i n g t o work i s n ' t  that,  Some o f  she  enjoy the  d o e s w o r r y , b u t she  much more s t r e s s f u l  name i t . "  harder to  i n t o t a l k i n g a b o u t how l i f e  "Nothing i s  sick.  to  f r o m some  states that  She s t a t e s t h a t  D i s c u s s i n g a l l the  her  are s u f f e r i n g  Nancy a l s o  She t r i e s  colitis  moment h a r d e r a s  leads  a  She t r i e s  t r y i n g t o h a v e a more e a s y g o i n g  However,  itself.  as  life.  Nancy i s life.  changed,  f o u n d i n c l u d e more empathy a n d  that  for granted.  have changed. i n her  "definitely  i n some o f t h e s e c h a n g e s .  understanding f o r people of  self-esteem  being diagnosed with c o l i t i s . "  l o o k f o r some p o s i t i v e s the  rare  changes.  Nancy s t a t e s t h a t person,  her whole  are the  c a u s e s me t o  avoid anything,  where I  including say  fun t h i n g s . "  Colitis  "no" t o more a c t i v i t i e s  over the  also  that  l o s s of these enjoyable  she  causes her to enjoys  have  and s h e  to  grieves  activities.  Nancy ends w i t h t a l k i n g a b o u t how h a r d u n i v e r s i t y for  her,  really  "I t r y t o  hard.  I  find  I think that thus  far,  l a u g h and t a k e t h i n g s  in stride  university really hard."  t h e most d i f f i c u l t  and t h a t  I just  can't  side  She  deleterious  effects  it  will  of  laugh about,  h a v e on t h e  but  it  is  continues:  effect  my low p e r f o r m a n c e i n u n i v e r s i t y b e c a u s e  is  of  colitis,  has  been  the  rest  o f my  life  choices.  Reflections  from t h e P r o c e s s  I had c o n v e r s a t i o n s d i s e a s e and c o l i t i s As t h e y  heard the  statement:  lives  as  rarely  w i t h young a d u l t s w i t h  w i t h i n as  possible.  anyone e l s e " .  Diary  disclosed  equal r e l a t i o n s h i p  t h e i r experiences  They seemed t o  them.  I attempted to  somebody s u p e r i o r t o  them,  o r as a j u d g e o f  Overall,  to  I  in  they  with  their stated  never pose their  often  had  as  actions,  them. the  interviewing experience  n a r r a t i v e s worked w e l l , established.  t o me,  r e g a r d my i n t e r e s t  an i n d i c a t i o n o f u n d e r s t a n d i n g t h a t  one o f  as  "I h a v e n e v e r t a l k e d a b o u t t h a t  been shown t o  but as  Crohn's  and f o l l o w e d t h e  and w r i t t e n guidelines  T h e r e was an e a s e a b o u t t h e p r o c e s s  be a i d e d by t h e  I had  that  i n t r o d u c t i o n to the p a r t i c i p a n t s ,  seemed a n d by  the  meaning t h a t  this  particular lived-experience  e a c h p a r t i c i p a n t . D u r i n g my r e l a t i n g t o appeared t h a t the  telling  a level  of  had not been  their  actual  value of  t a l k about h i s  d e s c r i b e d the  an a c t i v i t y  that  for  in  words  interviews, nature  of  last  process  the  for interview.  was t o h a v e  few y e a r s .  the  Another  life  as  i n h e l p i n g her in relation  p a r t i c i p a n t s found the  importance i n t h e i r  One  of w r i t i n g a n a r r a t i v e  was p a r t i c u l a r l y v a l u a b l e  A l l of  central  to  interview  of  to  and  s h a r i n g what  experiences  with  a  illness. felt  very strongly  w o r d , and d o i n g t h e  listening  to  This kind of a significant  entire  job myself.  I  was an i m p o r t a n t s t e p i n t h e  found  data  word  that,  narratives, analysis.  i n - d e p t h c o n c e n t r a t i o n w i t h each t r a n s c r i p t p a r t of  I know t h e  own s t o r y .  about t r a n s c r i b i n g each t a p e ,  t h e s e t a p e s and r e a d i n g t h e w r i t t e n  o v e r and o v e r ,  feel  research  a n a r r a t i v e v e r y meaningful i n terms  chronic I  process  a n d become more aware o f who she was  illness.  was o f  the  shared during the  participant  writing  When words o r g r o u p s o f  commented on how i m p o r t a n t i t  opportunity to  her  helped  it  statements.  p a r t i c i p a n t s was  reflect  that  able to q u i c k l y c l a r i f y the  Feedback about the  participant  t r u s t was d e v e l o p e d  stories.  for  participants,  f u l l y u n d e r s t o o d by me d u r i n g t h e  p a r t i c i p a n t s were their  of  the  held  the  process  ten h i s t o r i e s  T h i s kind of  of  almost  i d e n t i f y i n g themes. as w e l l  as  was I  I know my  f a m i l i a r i t y a i d e d me i n a p r o c e s s  of  reflecting was  on t h e  fundamental nature of  i n v a r i a n t across  stories.  the  experience  that  CHAPTER FOUR General  This  chapter  c o n s i s t s of  Structure  the  prevalent  underlying  themes i n v o l v e d i n l i v i n g w i t h C r o h n ' s d i s e a s e and These are d e f i n e d interviews to  as  the  "general as  to  constitute  the  as  to  describe  it  i n a way t h a t  After  primary  core  of  the  of  step i s  the  examples that  to Each  its  s e e n by v a n Manen description.  presented  in a  quotations. a move f r o m t h e  situated  structure  the  "general  structure".  step returned to  the  raw d a t a .  A problem  this  step,  possibility  that  I may h a v e o v e r l o o k e d r e l e v a n t  hinder  an a d e q u a t e  effort  to  when d e a l i n g w i t h t h e m e s ,  and w r i t t e n analysis  compare t h e  Data  full  terms  protocols  the  from i n d i v i d u a l  verify  phenomenological is  all  it  of  phenomenon.  to  interview  makes  descriptions  themes i s  participants together  final  in this  specific  of  and w r i t t e n n a r r a t i v e s ,  the  data of  themes w h i c h were deemed  features  what K a r l s s o n (1993)  also  studying the  referred  1993).  i l l u m i n a t e the  i n c l u d i n g extended This  (Karlsson, to  This discussion  from a l l t h e form,  T h e s e themes a r e  i l l u s t r a t e d by a number o f  selection.  transcribed  is  I explicated  transcripts,  (1984)  to  others.  phenomenon,  theme i s  structure"  researcher  participants,  visible  participant's  and w r i t t e n n a r r a t i v e s .  My r o l e the  by a l l t h e  colitis.  of  different  narratives, the  themes.  is  I  the  units  in  which would I made a  great  transcribed interviews  and  written from the last  analysis  step i s  analysis life  n a r r a t i v e s w i t h one a n o t h e r .  is  a l l the  presented presented  experiences  attempt  of  of  The r e s u l t s  participants together  i n terms i n terms  of of  young a d u l t s  different  o r i g i n a l accounts  elaboration to  assess the  agreement  communications  of  Summary o f  Themes  1.  The l i f e  or c o l i t i s  participants  experiences i n c l u d e the  constantly  2.  The l i f e  or c o l i t i s  3.  of  include grief  Performance  2.2  Body and p o s i t i v e  2.3  Enjoyable  Life  experiences  of  My  enough  the  with Crohn's  disease  accompanying t h r e a t  of  the  with,Crohn's disease  loss.  abilities body  image  activities of  young a d u l t s  entailed  uncertainty  with Crohn's disease  lowering of  i n the  with Crohn's disease or c o l i t i s feelings  the  and my i n t e r p r e t a t i o n .  young a d u l t s  include a significant  The e x p e r i e n c e s  The  symptoms.  and  2.1  colitis 4.  experiences  with  between  o f young a d u l t s  u n p r e d i c t a b l e occurrence of  of  this  with a chronic i l l n e s s .  r e p o r t the  the  in  themes.  characteristics  was t o  the  obtained  lives  self-esteem. of  Unknown  illness  4.2  Unknown h o s p i t a l  4.3  Tests  young  adults  i n c l u d e a marked i n c r e a s e  a c c o m p a n i e d by f e a r  4.1  or  or  anxiety.  in  5.  4.4  Seeing  significant  4.5  Feelings  c a u s e d by  The e x p e r i e n c e s  colitis  others worry illness  o f young a d u l t s w i t h C r o h n ' s d i s e a s e  involve a great  d e a l of  change and a d j u s t m e n t  or  in  many d i m e n s i o n s . 5.1 6.  Self  The e x p e r i e n c e s  colitis their  i n c l u d e d e p r i v a t i o n of  8.  some o f  their control  or  over  lives. 6.1  7.  o f young a d u l t s w i t h C r o h n ' s d i s e a s e  Weight  Types of  experiences  7.1  Drugs  7.2  Medical  The l i f e  include feeling  violated.  procedures  experiences  include feeling  a great  deal  of  anger.  Discussion of General Structure  1.  The l i f e  or c o l i t i s  experiences i n c l u d e the  unpredictable  One o f  constantly  occurrence of  chronic illness  symptoms and " c o n s t a n t through various l i f e  is  disease  accompanying t h r e a t  of  the  symptoms  t h e most a p p a r e n t e l e m e n t  with t h i s  it  o f young a d u l t s w i t h C r o h n ' s  e x p e r i e n c e d by y o u n g  the t h r e a t  of  adults  unpredictable  w o r r y " as t o w h e t h e r t h e y w i l l tasks without g e t t i n g  sick.  make  "There  was t h e  constant  school,  my c l a s s e s ,  d a y I am g o i n g through i t having to whether the  to  they  the  that  w i l l get  y o u n e v e r know,  worry."  you.  It's  really,  usually  threat  w o u l d be q u i t e  faced with t h i s  of  it  as  to  one  I w o u l d make i t  always  d i s e a s e and w h e t h e r  it's  colitis,  and  not  "You j u s t  never  and  really  constant that  to  having to  going to  of  my  energy  and t h r o u g h  the  " S c h o o l was  real  t h i n k a b o u t y o u r damn  cause you t o  have t o worry about  it."  rearrange  All  the  have  felt  some f o r m o f  uneasiness about  like,  will  I make i t  school,  getting  sick: It  was  okay, school get  to  b e c a u s e I remember I ' d be f i n e , I'd think,  nervous  of  u n p r e d i c t a b l e o c c u r r i n g symptoms,  hard because y o u ' r e  participants  of  awful  common f e e l i n g s  work d a y r a t h e r t h a n on t h e work i t s e l f . "  I always  really  can d r i v e you nuts  f r u s t r a t i n g b e c a u s e most  went i n t o w o r r y i n g i f  your day.  make  awful,  a h e a d f o r me."  and t h i s  Y o u ' r e always  feeling  F r u s t r a t i o n and w o r r y a r e t h e  accompany t h i s "It  I am g o i n g t o  l i v i n g with Crohn's disease or  day l i e s  to  "I n e v e r know what k i n d  s i c k has been n o t e d by many a s  I w o u l d wake u p ,  frustrate  sick.  t o make i t  w a y . " The " e n d l e s s u n c e r t a i n t y "  k n o w i n g what k i n d o f know,  I w o u l d be a b l e  and w h e t h e r  getting  aspects of  "Everyday  if  day e t c . "  have,  without live  worst  worry of  well  I'm j u s t  cause I ' d t h i n k ,  will but  I  hearing  about t h e r e ,  am I g o i n g  to  but  be  Another p a r t i c i p a n t states that,  "Your l i f e  question  s i c k today?" These  m a r k , am I g o i n g t o  get  is  feel  one  I'd  okay. big young  adults day,  worry about whether  the  doesn't and a t  week,  the  year," without  go by w i t h o u t night  it's  they w i l l  having to  even w o r s e .  make i t  getting  through  sick,  "A d a y  t h i n k about your  I just  hate  that  "the  illness,  constant  u n c e r t a i n t y y o u a r e f a c e d w i t h . " They n e v e r know when a symptom i s  going to  a p p e a r and how i t  is  going to  effect  moment,  "One m i n u t e I c o u l d be e n j o y i n g a c o n v e r s a t i o n  friends  and t h e  my s t o m a c h . they  It's  at  and i t  stories of  the  feel  that  is  or c o l i t i s  in this  experiences include grief  The p a r t i c i p a n t s ' things  that  of  it  o f young a d u l t s and  experiences  is  was  going to all  In the  pop  the  found t h a t  all  concerning  with Crohn's  include grief  disease  and l o s s .  but i t stories  One o f  " g r i e v e d " o v e r was life  tasks,  dealing with  h a s had t o we c a n s e e  their  "My marks  and I sometimes c a n ' t h e l p c r y i n g a b o u t  s e a t t o my h e a l t h . "  never  loss  performances at  i m p o r t a n t t o me,  when  symptoms."  have dropped c o n s i d e r a b l y s i n c e  disease, School  study,  t h e s e young a d u l t s  l e s s than p e r f e c t school  is  w r e c k y o u r d a y . " When l o o k i n g a t  p a r t i c i p a n t s included statements  2. T h e l i f e  you can  You n e v e r know when i t  were u s e d  in  t h e i r d i s e a s e . "My  a d i s e a s e because  "unpredictable occurrences  the  w o r r y . " They w o r r y a b o u t  symptoms o f  really  ease w i t h i t .  up and t o t a l l y  with  I c o u l d be b e d r i d d e n w i t h huge p a i n s  a constant  are going to  disease, feel  next  the  take the  in  this  this. a back emphasis  p l a c e d upon t h e various  "My i l l n e s s  do enough t o  complete whatever do t h a t  The p a r t i c i p a n t s a l s o  experience  because  over the  loss  it  is  little  I have t o bit  do.  and i t  will  just  My b o d y  extra that "grief"  or  it  used  they "My o n c e  n e v e r be  the  I ' m no l o n g e r a s o - c a l l e d s t r o n g p e r s o n . " T h e s e y o u n g  feelings  o f weakness.  "A s l u g ,  e v e n a weak s l u g s o m e t i m e s . mornings anymore." In the their  healthy bodies  over."  "I've  lost  so much.  lost  so much.  It's  Another element  them t o h a v e t o  their  lives  is  much,  I've  life  the  loss"  of  is  As t h i s  had t h i s  illness.  f i n d m e a n i n g now." o f young  that these  "no" t o a c t i v i t i e s  has t o  adults  illnesses that  bring their  greatly  p a r t i c i p a n t emphasizes: g i v e up some o f t h e  sports  I do,  s o v e r y h a r d t o do t h a t when y o u l o v e them and t h e y h e l p t o b r i n g  "Sorry,  "took  so much more d e v o i d  experiences  i n enjoyable a c t i v i t i e s  I know I h a v e t o it  up i n  e n j o y m e n t and m e a n i n g . They r e c o g n i z e t h a t  "involvement decline."  a s l u g and  "grieve the  feels  even h a r d t o  say  from  Crohn's disease or c o l i t i s  with Crohn's disease or c o l i t i s cause  how I f e e l ,  they  My l i f e  of the  especially  My body c a n b a r e l y g e t  stories  before  suffer  that's  a n y t h i n g i m p o r t a n t t o me s i n c e  I've  and now I  of t h e i r healthy bodies.  a d u l t s p o i n t out t h a t t h e i r bodies  of  in  Crohn's disease  emphasize t h e  h e a l t h y body h a s b e e n t a k e n o v e r , same.  of  makes my j o b v e r y h a r d ,  no l o n g e r a b l e t o  to."  of t h e i r performance a b i l i t i e s  important a c t i v i t i e s  colitis,  is  "loss"  no," i s  a line  joy i n t o your  I have h a d t o  but so  life.  repeat to  friends  t o o many t i m e s An e x a m p l e o f t h i s  now. theme from a m a l e p a r t i c i p a n t g o e s  as  follows: I have t o  look f o r other hobbies  t h e moment I c a n ' t do any o f t h e and I guess t h e y have t o give  up so much o f t h e p h y s i c a l p a r t  d o i n g some t h i n g s  sports if  if  it's  Having to  I'm not f e e l i n g w e l l ,  b u t n o t as o f t e n ,  that.  But a c c e p t i n g i t  of  adults grieve  over.  over a l o t  things.  fall  hard,  I still  enjoyable a c t i v i t i e s  into  of  "I f e e l If  experience  constantly  that  *no'  real  loss"  just  "I  of still  have t o  r e a l l y miss c a u s e s an  me."  accept  doing  assortment  i n which t h e s e young sad,  and  sure,  I thought about i t  no d o u b t , I'd  ' and  probably  some t y p e o f deep d e p r e s s i o n . " A n o t h e r  participant's I  say  my home now,  over the  and I g u e s s I ' l l is  to  no w a l k i n g a n y m o r e .  grieve  Having Crohn's disease or c o l i t i s  losses  had  especially  t h e y c a n no l o n g e r do o r do a s o f t e n ,  do i t  of  I've  at  to,  up t a k i n g w a l k s h a s been a huge t h i n g t o  The p a r t i c i p a n t s a r e " f o r c e d t o many t h i n g s  I used  "I know I h a v e t o  g e n e r a l l y with the c a r ,  give  because  o f who I am.  a n d t r a v e l l i n g . " "I c a n b a r e l y l e a v e  I do,  it."  ones t h a t  be l e s s p h y s i c a l .  Another p a r t i c i p a n t states that, to  i n my l i f e  feel  indicates:  unhappy when I c o n t e m p l a t e my  I h a d , and a l l t h e  how i t  is  now d e a d .  It  fun a c t i v i t i e s  that  a l m o s t makes me f e e l  life  I d i d , and like  I am  i  dead sometimes, so  often  and t h a t ' s  not a n i c e  a b o u t t h e way my l i f e  was.  feeling.  I  E x i s t e n c e was  dream so  much e a s i e r  and g r a t i f y i n g b e f o r e  I got  this  depleting  illness. Another p a r t i c i p a n t states that, much a n d l e f t this  so  little.  O h , how I  t h i n g . " The p r e s e n t  more e n j o y a b l e  2.1  individual The s t o r i e s  l o n g f o r my l i f e  can cause  and l e a d t o g r i e f  clear  before  support  reminiscence  over the  loss  so  for  about  of  these  abilities  abilities to  has t a k e n  times.  Performance  Performance  illness  study s u p p l i e s  how h a v i n g a c h r o n i c i l l n e s s f o r m e r good t i m e s  "This  are a b i l i t i e s  be c o m p e t e n t  at various l i f e  p r o v i d e examples  performance a b i l i t i e s "  which a l l o w  after  the  tasks  they  of g r i e v i n g over the  face.  "loss  of  developing Crohn's disease  or  colitis: T h i s d i s e a s e h a s d e g r a d e d my p e r f o r m a n c e i n e v e r y t h i n g , I mean t h i s  fully,  It's  a low p o i n t  they  c a n ' t meet t h e  and I c a n ' t h e l p b u t e m p h a s i z e  in a person's  life  standards that  when t h e y  this.  realize  they used t o  be  able  to. The p a r t i c i p a n t s ' p e r f o r m a n c e a b i l i t i e s activities colitis of  a r e g r e a t l y h i n d e r e d by h a v i n g C r o h n ' s d i s e a s e  and t h i s  creates  these a b i l i t i e s ,  grades theme  t o l d as  feelings  of  "As a c o n s e q u e n c e  suffered quite is  in various  "sadness"  over the  follows:  loss  o f my c o n d i t i o n , my  a b i t . " Another i l l u s t r a t i o n of  or  this  Everything takes performance,  a turn  but I c a n ' t help i t ,  do,  I am d o i n g my b e s t ,  it.  I have t o  not  what am I s u p p o s e d  and I j u s t h a v e t o k e e p  accept that  they  feel  I c a n ' t do as w e l l ,  illness."  as  "That's just  t h e way i t  is.  Some o f  Some o f  them s t a t e d  effects  colitis  on t h e i r p e r f o r m a n c e a b i l i t i e s  "critical  life  that the  "over the  loss of  b o d y image t h a t  loss"  that  I o f my  these  things,  are the  worst."  Crohn's disease  or  c a u s e them t h e i r  of t h e i r healthy bodies  most  pervades  F o r some o f t h e s e y o u n g and t h e  negative  they are f a c e d w i t h appears t o have a t h a n any o f t h e  other  "Talk about l o s i n g y o u r s e l f .  you go,  and t h a t ' s  t h e i r bodies  t r o u b l e s them,  b o t h e r e d me,  of  t h e i r healthy bodies  "deeper s i g n i f i c a n c e experience.  that  body image  p a r t i c i p a n t s ' experiences.  adults the  or  problems."  2 . 2 Body a n d p o s i t i v e  image o f  least  I c o u l d have i n my j o b b e c a u s e  school record,  goes,  at  "Mostly I f e e l  s u c h a s my l e s s t h a n p e r f e c t  the  to  with  that without Crohn's disease  c o u l d do much b e t t e r ,  h a v e n ' t done a s w e l l  Grieving  i n c l u d i n g my j o b  a t t h e moment.  These young a d u l t s colitis  f o r the worst,  because  as  losses" that  they  When y o u r b o d y  t h e w o r s t . " They r e c o g n i z e t h a t "weak,  s i c k and t i r e d "  " F e e l i n g weak,  was s o m e t h i n g  I d i d n ' t have t h e  is  the  something  that  s t r e n g t h I used  to."  A n o t h e r example o f with Crohn's  this  a healthy  up t h e  dream o f  to  accept  and p o s i t i v e  aspects of things  to  is  always,  loss"  illness,  and t h e y ' r e  participant  illness  include playing sports,  difficult  the it  hardest was  those  are and  before  missed."  that  exercising,  and  their  has t o d e c r e a s e . " A  e x p r e s s e s one o f  the  effects  of  her  thus:  another t h i n g ,  I can't play racquetball  one o f my main t r u e  a g a i n sometime,  at  now I h a v e t o g i v e  that's  well.  activities  with c o l i t i s  anymore,  for  t h e most  are "greatly  i n enjoyable a c t i v i t i e s  There's  hardest  t r u t h o f my e x i s t e n c e ,  The p a r t i c i p a n t s r e c o g n i z e  "involvement  it's  healthy  a l w a y s m i s s my h e a l t h . " T h e i r b o d i e s  Enjoyable a c t i v i t i e s  to  their  "I t h i n k one o f  the  But  no l o n g e r  be h e a l t h y a g a i n . " "Never a g a i n ,  Enjoyable  chronic  of  one o f  having Crohn's disease or c o l i t i s  travelling.  when I h a d  the  d e a l w i t h i n t e r m s o f my body was t h a t  two h a r d w o r d s ,  2.3  life  one o f  t h a t my body i s  body image as  having t h i s  never going to  I'll  by a p a r t i c i p a n t  the past  f o r me I t h i n k i t ' s  The p a r t i c i p a n t s "emphasize t h e bodies  expressed  s t r o n g body and c o u l d do a n y t h i n g .  because  things  is  disease:  I have t o g i v e  hard,  theme  a l l there  is  to  least it it.  loves,  and I may be  I c e r t a i n l y hope s o ,  up.  I have t o  give  it  able but up,  Another p a r t i c i p a n t states that, some t h i n g s  if  travelling." give  I'm not  adults  feeling well,  player,  do i t  theme  clearly  I  difference  i n enjoyable a c t i v i t i e s ,  couldn't is  anymore." In the  Having to  b i t at  " s o r r y you j u s t  activities I was  "yes  give is  a time,  this  let's  a huge  do  of  I know i t ' s  love  of being a c t i v e  It's used  in various  of  sports.  those things  So,  I just  I ' d do a n y t h i n g t h a t was a h a r d  physically couldn't  climbing the w a l l s  in  way.  g i v e up some a c t i v i t y :  s t o p p e d me from d o i n g some t h i n g s .  I guess i t ' s  it's  l o s s t o them:  a totally different They have a l l had t o  pay  it".  involved with a lot  a lot  and o f t e n  t h o s e messages f r o m a body t h a t  up t h e i r  hard.  to  just  c a n ' t go c y c l i n g t o d a y " .  do them a n y m o r e . So now I ' m j u s t  it's  and I  but I s u r e have t o  t e l l i n g me,  from a e r o b i c s t o w a l l c l i m b i n g . loss,  give  present:  depressing getting say  to  "I was a g o o d  f o l l o w i n g statement  a t t e n t i o n t o what my body i s  to  having  and  in their ability  b u t t h e n I h a d no e n e r g y ,  c a n do a l i t t l e  saying  sports  up  c a n ' t p l a y s p o r t s r i g h t now." T h e s e y o u n g  experienced a negative  basketball  give  and r i g h t now I ' m t h e k i n g o f h a v i n g t o  I just  participate  especially  "Here we go a g a i n on t h e t o p i c o f  up s t u f f ,  up s t u f f .  "I know I h a v e t o  s t o p p e d me from d o i n g a l o t  Somebody m i g h t phone u p ,  of  "let's  Actually  things, go  skiing"  and i f feel  I'm not  feeling  that  doing i t ,  I have t o able to  "no I d o n ' t  really  l i k e going s k i i n g " .  Another p a r t i c i p a n t states that, love  great,  it's  take  be a s  it  a p a r t o f me,  "I want t o do i t but I  because  just.can't  anymore.  more e a s y . " The p a r t i c i p a n t s a r e no  active  a s t h e y were  longer  before:  I c o u l d n ' t do a n y t h i n g p h y s i c a l . B a s i c a l l y I c a n just  lie  shows,  a r o u n d and w a t c h T . V . I c a n w a t c h t h e  but while  exercise.  sitting  I can't  made me f e e l  on my b e h i n d .  I  felt  So,  "You j u s t  feel  physical longer that  type  Along with l o s i n g the  activities,  that  blah  y o u c a n b a r e l y do a n y t h i n g f u n anymore, and t h a t ' s feeling."  exercise  r e a l l y bad.  Another p a r t i c i p a n t states that,  lousy  only  couldn't  j u s t hop up and j o i n i n .  really,  I  a b i l i t y to  because  really  e n j o y more  many o f t h e s e y o u n g a d u l t s  f u l l y e n j o y many o t h e r t h i n g s  such as  c a n no  eating,  "Sad  I c o u l d n ' t e v e n e n j o y my f a v o u r i t e b r e a k f a s t a n y m o r e . "  The f o l l o w i n g s t a t e m e n t One o f  biggest  echoes t h i s  things  theme:  was g o i n g o u t t o  different  r e s t a u r a n t s w i t h f r i e n d s and s a m p l i n g d i f f e r e n t of  foods,  they're  b u t I c e r t a i n l y c a n ' t do t h a t  serving exotic  f l a v o u r s of  Another p a r t i c i p a n t states that, have t o .  You d o n ' t e a t  experience I was  out of  types  anymore,  unless  jello.  "You j u s t  eat  because  you  enjoyment anymore." T h i s  was b o t h s a d and f r u s t r a t i n g : sad because  so many o f  the  a s p e c t s o f my  life  that  made i t  angry,  full,  boy d o e s i t  adjust your l i f e so much. way, me.  I c o u l d no l o n g e r p a r t i c i p a t e , make y o u a n g r y b e c a u s e  so much,  It's  l i v e my l i f e  and t h a t makes me a n g r y , I can watch hockey, harder to  enjoy  you have  and y o u h a v e t o m i s s  I watch o t h e r p e o p l e  to  out  on  f o r me i n a  I guess a t them,  but I c a n ' t p l a y i t  life  and  as much now t h a t  and  at  anymore. I have  this  disease. Another p a r t i c i p a n t states that, things  that  you can s t i l l  do them h a l f that  they  decently.  are  things" that  over the  enjoy.  I've  c e r t a i n l y h a v e had t o g i v e  lot.  It's  as  sit  on t h e  enjoy the  activities  always  b e i n g an o b s e r v e r  I used t o .  instead of  a full  Having Crohn's disease or c o l i t i s of  losses  grieve I  enjoyable  activities  always  feel  so  and a l l t h e  now g o n e .  before  a  inside  and w a t c h  I don't  enjoy  participant."  c a u s e s an  i n which the  assortment  participants  I got  s a d when I t h i n k a b o u t t h e fun a c t i v i t i e s  I'm s o r r y to  that  Life  was so much e a s i e r  this  draining  Another p a r t i c i p a n t s t a t e s , well  cried  over:  had, is  of  but  "I c r y  o f my o l d l i f e  that  express  life,  and I ' v e  life."  to  o f many  enjoy  up a l o t ,  sidelines  others  and be a b l e  loss  "I s t i l l  l i k e a f u n e r a l f o r your past  I have t o  find  v e r y sad a c t u a l l y . " They  grieve  they used t o  so h a r d t o  do t h a t y o u e n j o y ,  It's  "forced to  "It's  that  I d i d , a n d how and  it  enjoyable  disease.  "Past  say the p a s t  life  life  life  versus  wins  out,  present and t h a t  life, is  I  disturbing. about the  Sometimes  good o l d days t h e n l i v i n g h e r e  This present  research supplies  a chronic illness times  can cause  and l e a d t o g r i e f  enjoyable  3.  I t h i n k I s p e n d more t i m e t h i n k i n g  Life  colitis  over the  l o s s of  of  illness  is  It's  lowering of  as  one o f  the  critical  one o f  how t h e r e like  find  living  t h e s e young  about h a v i n g  s e l f - e s t e e m h a s been  I have t o  of  adults  their  lowered:  o u t who I am a l l  over  again,  r i g h t now I d o n ' t r e a l l y l i k e who I am, and I  know i t ' s  it  the hardest things  the  experiences  Many o f  or  self-esteem  i n s e l f - e s t e e m has been i n c l u d e d , by  because  glass  t h e s e more  young a d u l t s w i t h C r o h n ' s d i s e a s e  with Crohn's disease or c o l i t i s . that  s u p p o r t f o r how h a v i n g  r e m i n i s c e n c e about former good  include a significant  participants,  state  present."  times.  experiences  A decrease  clear  i n the  because  I see  o f my i l l n e s s .  makes y o u see  myself  This  yourself  is  through the  looking  n o t a good i d e a ,  because  as b e i n g p r e t t y u s e l e s s  as  a  human b e i n g . Many e m p h a s i z e how h a v i n g . C r o h n ' s d i s e a s e o r c o l i t i s a  "huge blow" t o  their  self-image:  I p r e f e r not t o t h i n k about myself isn't just  very nice live  life  causes  r i g h t now,  and i t ' s  because better  the to  without t h i n k i n g about y o u r s e l f  picture try  to  very  much.  T h i s d i s e a s e has made me f e e l  who I am as  some l o w e r i n g o f t h e i r  "Whirling through existence about m y s e l f . "  m i r r o r because  think  get  about  this  self-esteem,  d e f i n e d by some shame a n d  hard to  look at y o u r s e l f  scarred person for l i f e ,  around t h a t view.  I know i t ' s  in  the  and I no g o o d  a b o u t y o u r s e l f t h a t w a y . " T h e i r d i s e a s e h a s made  t h e s e young a d u l t s of  is  "It's  you see  d o n ' t know how t o to  lousy  a person.  The p a r t i c i p a n t s f e e l  disgust  real  self-worth,  feel  a great diminishment i n t h e i r  "I a l w a y s  "You c a n ' t h e l p b u t f e e l  felt  so much l i k e a l o s e r ,  a little  less of  sense  schmoe."  a p e r s o n t h e n what  y o u were b e f o r e t h e y c u t y o u open and t o o k p a r t s o f  your  body o u t .  kidding,  It's  l i k e b e i n g F r a n k e n s t e i n , no I ' m o n l y  I guess." Another p a r t i c i p a n t s t a t e s t h a t , feel  l i k e a f r e a k . " An example o f t h i s  participant  goes as  I think  others  l o o k a t you d i f f e r e n t l y , and t h e y s e e  b e e n c u t open f o r some r e a s o n . r e a c t i o n s h a v e c a u s e d me t o o ,  at  "made me f e e l  d o n ' t know,  dirty  Sick,  to  your stomach  I guess  when has  others'  look at myself  has caused a l l o f  one t i m e o r a n o t h e r ,  themselves,  feeling."  So,  especially  as  not  right.  Living with a chronic i l l n e s s adults,  theme f r o m a m a l e  follows:  you have your s h i r t o f f  quite  "You s o m e t i m e s  to  not  feel  feel  I felt,  I  Real bad. General yucky  Another p a r t i c i p a n t ' s experience you j u s t  good about  r e a l l y bad a l l o v e r .  or something.  t h e s e young  indicates:  l i k e a sick person,  because  on  the  surface  t h a t ' s who y o u a r e ,  and y o u h a v e t o  s a v e any s e n s e o f y o u r s e l f - w o r t h . for  this  care Another just  of  you're anyway,  really.  You d o n ' t  I might  see,  and t h e n cycle.  moment,  involve  of  of  Throughout the  sick,  What c a n y o u do  of  this  theme  care is  disease:  care  like  and i t  then  it's  what would  f o r who y o u  are  only  sick  with Crohn's disease  lessening  little  girl,  of  self-regard,  you're  just  e x p r e s s e s one  t h a n who y o u were b e f o r e  You c a n ' t  or  too of  the  thus:  You no l o n g e r h a v e t h e  somewhat  "You  worse.  and y o u ' r e d i f f e r e n t  you once had.  you're  even worse,  you d o n ' t  her chronic i l l n e s s  helped.  the  If  feel  A p a r t i c i p a n t with c o l i t i s  disease,  of  I'd  a considerable  You're different  one  deep  taking  follows,  I guess cause I d o n ' t  young a d u l t s  "When y o u ' r e a n u g l y ,  effects  is.  and y o u l o o k c l o s e r ,  t o make i t  experiences  foreign."  s o much. I f  r e a l l y . " A n o t h e r example  t h i n k a b o u t me,  colitis  t o l d as  by a p a r t i c i p a n t w i t h C r o h n ' s  the  c a r e about  even have t h e m o t i v a t i o n t o  I don't  going  theme i s  and t h a t ' s t h e way i t  be a v i c i o u s  Life  this  c a r e about y o u r s e l f  about y o u r s e l f  at  dig  to  yourself.  sick,  expressed  You h a v e t o  or e l s e y o u ' r e not going t o  i l l u s t r a t i o n of  don't  d i g deep  inside.  It  healthy  h e l p b u t see  getting can't  this  be  n o r m a l body  yourself  as  expressions  of  that  a b n o r m a l now. stories  effects  of  there this  are c l e a r  chronic illness  is  that  how  there  are  feelings greatly  of  b e i n g " u g l y and a b n o r m a l . " T h e s e f e e l i n g s  affect  the view the p a r t i c i p a n t s take of  The p a r t i c i p a n t s p o i n t t o how t h e elicits  d i s c o m f o r t from o t h e r s  critical  blow t o t h e i r  I t r y so h a r d t o have t h i s stopper, feel on,  and how t h i s  avoid having people because  it's  frequently  causes a  find  out t h a t  I  such a c o n v e r s a t i o n  makes p e o p l e u n c o m f o r t a b l e . When t h e y ,  uncomfortable then I f e e l a n d so o n .  themselves.  self-esteem:  illness and i t  illness  then  u n c o m f o r t a b l e , and  so  I b a s i c a l l y become u n c o m f o r t a b l e w i t h  myself.  It  because  t h e y ' r e u n c o m f o r t a b l e w i t h me a n d who I am a s  person,  my d i s e a s e  it In the  is  a l s o makes me f e e l  is  real  lousy about myself  p a r t o f me, t h a t ' s  just  way  unfortunately.  f o l l o w i n g statement  My d i s e a s e  is  this  a p a r t o f me,  theme i s  clearly  and I h a v e t o  present:  accept  and h o p e f u l l y t h e p e o p l e  a r o u n d me c a n a c c e p t  the  i n my l i f e ,  changes  them.  the  a  it  B u t so  uneasy  may c a u s e  far a lot  of people  it,  a r o u n d me h a v e since  to  been  t h e y know I  c h r o n i c t h i n g i n s i d e me.  Many o f  t h e s e y o u n g a d u l t s e m p h a s i z e how h a v i n g C r o h n ' s  disease  or c o l i t i s  and how t h i s  and  and i n r e l a t i o n  i n t h e i r r e a c t i o n s t o me now,  have t h i s  it,  commonly e v o k e s  uneasiness  h a s a huge i m p a c t on t h e i r  from  others  self-image.  A c a d e m i c s u c c e s s and upward movement a t w o r k , r e g u l a r l y a significant  source of  self-esteem,  r e s t r i c t e d when h a v i n g t o  c a n be  deal with these  severely  illnesses:  I  j u s t h a v e n ' t been a b l e t o do my b e s t a t w o r k , a n d  this  makes me f e e l  get  anywhere.  do,  a n d sometimes  l o u s y about m y s e l f  that's  n o t v e r y much.  and t h a t ' s  I'm s u r p r i s e d I even s t i l l  echoes t h i s  so many u n p l a n n e d d a y s ,  and so  of  longer.  success here,  Participants of  school  this  I've  hard to  theme,  I c a n b a r e l y make i t  l i k e l i h o o d of  to the  acts  department.  because  myself  well  am a s With t h e i r  I'm j u s t  lucky  I guess the next  break,  I don't,  enough,  to.  miss  first  ladder rung."  take time  up and i n  to  off  turn  achieving high standards:  h a d e v e r y s e c o n d exam d e f e r r e d , extension.  up  it's  f i n i s h i n g s o m e t h i n g seems  o r work when t h e i r i l l n e s s  after  face  How am I s u p p o s e d t o move up t h e  their  me t o  Sometimes  "I h a v e t o  repeatedly experience having to  affects  can't  have a j o b .  The f o l l o w i n g s t a t e m e n t  a lot  I  I c a n o n l y do what my h e a l t h a l l o w s  n o t v e r y much a t a l l ,  take  because  I've.had  extension  I h a v e an u n d e r s t a n d i n g  thing is  and sometimes  and t h e n t h i s  to  give myself  don't  destroys  a  treat r e a l l y who I  a person. inability,  at times,  comes a l o w e r i n g o f t h e i r Participants blame because  also  to  achieve high standards,  self-esteem.  described feelings  of having Crohn's disease  turn negatively  affected  of uneasiness  or c o l i t i s .  and  This  in  t h e way t h e s e y o u n g a d u l t s r e g a r d e d  themselves: I  sometimes  feel  Crohn's disease,  l i k e I am somehow t o because  blame f o r h a v i n g  there r e a l l y i s  nobody e l s e  to  blame, that to  and,  suggest that  myself.  Really,  r e a l l y awful.  on m y s e l f  upon m y s e l f declining  4.  it  at it  b l a m e d was some o f  The e x p e r i e n c e s  of  fear  F e a r and a n x i e t y  or  What was g o i n g w i t h them, sick,  You f e e l  elaborating  p u t upon me,  low p o i n t s .  If  only serves to of  another the  I am t o  and  heal low  loser.  on t h i s  theme:  do d e a l and t h e n  with I  put  blame  my a l r e a d y  noted c o n t r i b u t i n g agent to  i n the  a  self-esteem.  lives  of  young  adults  i n c l u d e a marked i n c r e a s e  in  anxiety  first  f o r young  The p a r t i c i p a n t s  began f e e l i n g  on i n s i d e  sick.  "I was  adults felt terrified.  me?" T h e y do n o t know what  " T h r o u g h o u t my f i r s t  completely  I am  worthwhileness.  a r e common e x p e r i e n c e s  and t h i s  to  put t h i s  exacerbate  participants  entailed  and p r o g r e s s i v e l y  was w r o n g ,  I am a r e a l  I d o n ' t know how t o  with Crohn's disease or c o l i t i s . s c a r e d when t h e y  and my a b i l i t y  like  with Crohn's disease or c o l i t i s feelings  l e a v e me,  some p e o p l e  feelings  If  l e a v e s me i n a r e a l l y  statement continues  blame t h a t  lowering of  you,  people  blame f o r h a v i n g i t .  about myself  tell  around  where d o e s t h a t  T h i s makes me f e e l  The f o l l o w i n g  this  feel  I'll  place.  Feeling  I am t o  blame f o r h a v i n g i t ,  how am I t o  it  and I become u n c o m f o r t a b l e  getting  year of  university  worse w i t h o u t  was v e r y s c a r y . " incapacitated,  "Oh s u r e ,  and no one  is I  was  knowing real  wrong  what  anxious.  can t e l l  you  what's wrong." In the  s t o r i e s we c a n see  experienced  l i v i n g i n "constant  or c o l i t i s .  " C r o h n ' s d i s e a s e has  with  fear  and I . j u s t  These young a d u l t s  illness.  don't  it's  always  have t h i s  situation  to  with this  of  involved the  of  in a life  constant  feel  sick.  there  this  fear  "very scared"  does t h a t  to  end.  I have t h i s  because y o u ' r e  task  of  So much o f  In the  entering  there  especially  while  school  they  o r work,  everything  how y o u w i l l h a n d l e l i v i n g with t h i s  it  if  is  and a n x i e t y  related  to  uncertainty:  scared.  illness, If  unknown,  alright,  and y o u ' r e  they  to  about  be  it  to  and  natural  I think into  b e c a u s e so much i s  l i v i n g with  in  primarily  it,  to k i d yourself  work,  an  I g u e s s i n a way i t ' s  you thought  w o u l d be more u n h e a l t h y is  are  y o u were  fear  L i v i n g with this  take  involved  illness  appear to  them  " T h e r e was  I w o u l d be okay t o make i t "Fear of  all  are  and t h e  everything  "One  into  p a r t i c i p a n t s e x p r e s s how  s u c h as  if  stories  I'll  and t h e y  colitis  feel  and I  illness."  unknown a b o u t C r o h n ' s d i s e a s e  to  with  I think  u n k n o w n . " So much i s  this  often."  you,  a l l new now r e a l l y ,  illness."  day e t c . "  y o u r d a y and f e a r  so  feeling  l o n g as  anxiety  worry of  and t h r o u g h t h e  I feel  t h a t ' s going to  i n which the  with a lot  existence  Even o l d e v e r y d a y r e s p o n s i b i l i t i e s  with t h i s  many i n c i d e n t s  as  anxiety,  illness.  on new f e a r  live  fear  another,  cause attacks  f i l l e d my e n t i r e  "This i l l n e s s  something  they  fear" with Crohn's disease  know.  emphasized  having t h i s think  don't  how  inside  thinking  like of  it  the  you.  big  Not knowing a n y t h i n g about the Fear of the  hospital  participants'  and a n x i o u s the  the  is  hospital.  The h o s p i t a l  scary place.  of  one t h a t  and i t  is  had t o  the worst  scared  do w i t h b e i n g  p a r t of  "The h o s p i t a l ,  You n e v e r when t h e r e  fear.  pervades  "I remember b e i n g q u i t e  Another p a r t i c i p a n t emphasizes, one  causes a l o t  a fundamental  experience,  a b o u t my i l l n e s s  illness  going  to  it  in  all."  now t h e r e  is  poke you  with  a n e e d l e o r do some o t h e r h o r r i b l e t h i n g . " A d i s t i n c t i o n a l s o be made between f e a r medical  tests  hospital,  and p r o c e d u r e s  "My t i m e  worst  i n my l i f e ,  tests  that  hospital  of  spent  the h o s p i t a l experienced  experienced."  tests  Colonoscopies, It  was  all  of  poking every  enough.  It  types of  just  being  i n the  procedures,  Seeing  expressed  hospital  and f o u n d i t  significant  others  I've  ever to X-  etc.): understand,  see  if  and  then  you  have  sometimes.  how t h e y  had  never  and g o i n g t h r o u g h "very a n x i e t y  w o r r y a b o u t what  are going through can i n c r e a s e  present  and a n x i e t y  that  The  Barium swallow  participants fear  disgusting  begin with,  d o e s n ' t make s e n s e  the  administered  (ie.  day f o r more t o  t h e s e young a d u l t s  experienced  tests  so new f o r me and I d i d n ' t  they're  Many o f  things  various blood t e s t s ,  y o u ' r e weak and low on b l o o d t o  the  you're there.  are the worst  There are a v a r i e t y  in  of  a r e some o f  and a l l t h o s e t e r r i f y i n g l y  those with Crohn's disease or c o l i t i s rays,  while  i n the h o s p i t a l  y o u ' r e put through while  and t h e  and f e a r  can  the  these  provoking." the already  l i v i n g with Crohn's disease  or  colitis  causes.  seeing the  " E v e r y t h i n g was v e r y new and s c a r y t o  looks  on my p a r e n t s '  and o n l y  c a u s e d me t o  reflects  on a p a s t  I  looked  faces d i d n ' t help  be more f e a r f u l . " T h i s  me,  either,  participant  memory:  i n the m i r r o r  and I saw t e r r o r ,  and t h e n  I  l o o k e d t o my f a m i l y f o r c o m f o r t b u t t h e y  couldn't  help  being t e r r i f i e d for t h e i r was t h o u g h ,  that  child  either.  The bad  thing  s e e i n g them s c a r e d o n l y made me more  scared. These young a d u l t s regularly  and t o  enhances t h e i r Feelings "anxiety,"  see  caused  "nervousness,"  others  "despair,"  emotions  can,  "intense  "guilt,"  at  times,  feelings,  become  going to  "Sometimes extremely  too  feel  I just  scary,  get  An e l e m e n t o f  their  situations  experiencing  fear  of  deal their  a flood  because  my own f e e l i n g s . "  These  much t o  afraid  I've  after  include:  and " g u i l t . "  over.  "one  only  fear."  take  states  just  fear  "worry,"  p a r t i c i p a n t s to  come up and i t ' s  they're  of  " f r u s t r a t i o n , " "anger,"  own o v e r p o w e r i n g  like  experience  by C r o h n ' s d i s e a s e o r c o l i t i s  w i t h and a l s o c a u s e t h e  emotions  they  w o r r y i n g a b o u t them  own f e e l i n g s  "fear,"  overwhelming  stated that  become  it  of  feels  afraid  of  include  another." Another p a r t i c i p a n t  that:  I don't  think I've  ever  felt  at peace s i n c e  C r o h n ' s d i s e a s e b e c a u s e I'm s c a r e d o f time,  and t h e r e ' s  so much t o  it  having  most  be s c a r e d o f .  It  of  the  seems a  lot  of  your l i f e  is,  is  spent worrying about your  health. All  t h e s e y o u n g a d u l t s remembered how t h e i r  u s e d up what l i t t l e "It  w o u l d be q u i t e  went  if  r a t h e r t h a n on t h e hard,  I  spent  and how i t affecting  e n e r g y t h e y had f o r a c t u a l f r u s t r a t i n g because  into worrying  I w o u l d make i t  exam i t s e l f . "  of  life  most o f my e n e r g y to  and t h r o u g h my exam  "No wonder work was  my w o r k . M e a n w h i l e i t  my w o r k . " A n o t h e r component o f was r e l a t e d t o  fear  tasks,  so much t i m e h a v i n g t o w o r r y a b o u t my  might a f f e c t  experiences  feelings  the  was  so illness  already  participants'  a d d i t i o n a l numbers o f  worries.  "My C r o h n ' s h a s g i v e n me so much more t o w o r r y a b o u t and I hate  it.  I n e v e r know how and when i t  They e x p e r i e n c e effect  anxiety  " e a c h moment" o f  will  affect  illness  symptoms  their  "I f i n d  I worry a  lives,  a chronic i l l n e s s ,  it's  and i t  some f o r m o f  go away,  distress  worry about whether, feeling  "start  it's  just  it."  The f u t u r e s c a r e s  but i t ' s is  things  will  sick."  the  they  cause  s i c k most o f  "it's  g o i n g t o h a p p e n . " "Unknown,  never f e l t  I  life  don't adults  day," the  B u t I do s t i l l  the p a r t i c i p a n t s ,  what makes me t r u l y that  continually  some t i m e d u r i n g t h e  d e f i n i t i o n of  lot  means  h a p p e n . " The y o u n g  "I f e e l  will  that  The p r o b l e m i s  become a r e g u l a r t h i n g .  I d o n ' t know w h a t ' s  This  it  " i f at  will  word,  will  i n my l i f e .  know when t h e w o r s t o f  life."  o v e r how t h e  a b o u t my c o n d i t i o n . " " I t ' s not going to  my  they  time,  worry about  scary  because  that's  now and i n t h e  a big  future.  s c a r e d . " They a r e a l l a f r a i d afraid  of  before:  so  of  I  felt  very anxious  things,  and t h i n g s  nervous  about.  things.  Things that  nervous  about,  An e x a m p l e  of  this  and n e r v o u s .  Nervous about  silly  you'd think a person wouldn't  I never used to  be s c a r e d o f  I would never  like getting  to  feel  feel  these  anxious  and  school.  theme from a male p a r t i c i p a n t g o e s  as  follows: A t work I s t a r t e d what's going to day, to,  feeling  happen w i t h my h e a l t h  and who knows, maybe h a v e t o  this  interview  scared because I never  I n e v e r know i f  leave.  particular  I'm g o i n g  Who knows,  because of  that  know  to  have  I may h a v e t o  some symptom t a k i n g  over.  Another p a r t i c i p a n t states that,  "I remember  anxious,  I n o r m a l l y would b e . "  was I've  a lot  a risk just  more a n x i o u s  taker, become  A more c l e a r following illness  and I mean t h a t a bunch o f  fear  over h o s p i t a l  p r o c e d u r e s d)  way.  "I  B u t now  bones." now be made b e t w e e n  and a n x i e t y :  experiences  seeing others  getting  in a positive  scared  distinction will  sub-themes of  b)  then  leave  c)  a)  o v e r unknown  medical t e s t s  w o r r y , and e)  the  and  overwhelming  emotions:  4.1  Unknown  So much i s  illness  unknown a b o u t C r o h n ' s d i s e a s e and c o l i t i s  causes a great with  it.  deal  Many o f  the  of  fear  and a n x i e t y  for those  which  living  p a r t i c i p a n t s had n e v e r h e a r d o f  Crohn's  disease or c o l i t i s never  scared,  v e r y s c a r e d about t h i s . "  and t h e n y o u ' r e j u s t have e x p e r i e n c e d began t o "I was  get  feeling  scared of  to  scared s t i f f . "  fear  the  A l l this  this  is  it."  going to  generally  is  affect  this  it  I'm always  were them  to  just  the  expressed  worst  by a  unknown, I g u e s s f o r e v e r y o n e  live with.  and t h a t ' s  Will  "It's  I always  s c a r y because  whole t i m e p e r i o d ,  be t h i s  way,  scares  t h i n k about t h e i r it:  f u t u r e and how  and t h a t ' s is  in  disease:  " I ' m s i c k on and o f f , going to  effect  scared."  it  illness one  of  be  lousy?  f o r my f u t u r e ? " I t  when t h e y  I  and how t h e y  e v e n more u n p r e d i c t a b l e ,  through t h i s  remission."  "Once upon a t i m e  theme  Another p a r t i c i p a n t states that, haven't,  pain  adults  but I t h i n k with having a c h r o n i c  hardest things  feeling  your i n  p a i n and d i s c o m f o r t . " Many o f  totally  is,  makes i t  the  you're  a n d no  A l l t h e s e young  frightened,  A n o t h e r example o f t h i s  The f u t u r e  it  First  "I'm s c a r e d about t h e  p a r t i c i p a n t with Crohn's  will  "Of c o u r s e  a s b e i n g one o f t h e p r i m a r y e x p e r i e n c e s illness,  illness  it.  symptoms t h e m s e l v e s  having t h e i r  goals  and I  i n c r e d i b l e a b d o m i n a l p a i n s and I was  m a k i n g me f e e l .  of  "I h a d  y o u ' r e d i a g n o s e d w i t h some c h r o n i c i l l n e s s  i n y o u r f a m i l y has ever h e a r d o f  point  diagnosed,  e v e n h e a r d a b o u t I n f l a m m a t o r y Bowel D i s e a s e  remember f e e l i n g  one  when t h e y were f i r s t  gone  I  into  and more on t h a n o f f . how w i l l  If  I r e a c h any o f my  many o f t h e  participants  f u t u r e and how t h e i r  illness  It  w o r r i e s me.  worry,  Yeah,  I ' m sometimes o v e r w h e l m e d  and I t h i n k w h a t ' s g o i n g t o  develop  w i t h a normal  and I do h a v e k i d s , want t o is  be s i c k  Sometimes things  if  l i k e that  illness  All  How w i l l  when I g e t  get  sick?  a l l my l i f e ,  had i t  and i t ' s  know how t o  I  older,  don't  and  cancer  for then ten  a big  I  years.  possibility.  deal with a l l  of  it.  So,  of  her  a r e w o r r y i n g me now.  A p a r t i c i p a n t with c o l i t i s chronic  time,  you've  s c a r e s me,  I don't  I think,  am I g o i n g t o  a l l the  another t h i n g ,  That r e a l l y  life.  happen.  with  e x p r e s s e s one t h e  effects  thus:  these worries  could mention,  now,  t h e r e ' s p r o b a b l y numerous  but I guess the  biggest  a b o u t my f u t u r e ,  because t h e r e  Crohn's.  r e a l l y know what  I don't  is  one  is  I  worry  so much unknown a b o u t it  holds  in store  for  me. N o t k n o w i n g v e r y much a b o u t t h e effect  4.2  their  future  lives  illness  causes a l o t  and how i t of  will  fear.  Unknown h o s p i t a l  Fear of  the  hospital  participants' deeper  places  a c e n t r a l one t h a t  experience  and a p p e a r s ,  m e a n i n g t h a n some o f  being quite being  is  the  s c a r e d and a n x i o u s ,  i n the I have  hospital. ever  other  been."  is  the  f o r many,  to  fears,  remember  and t h i s  The h o s p i t a l  pervades  "I  had t o  one  of  T h e s e young a d u l t s  have  do  the  a  with scariest  stated  that  their  hospital  fear." is  "The h o s p i t a l  always  I've  something  never  hospital." adults  experiences  felt  so  an " o v e r w h e l m i n g s e n s e  a house o f  i n my l i f e  The s i t u a t i o n s  entailed  hospital  experiences,  belonged  at  i n the  I was  between f e a r  of  "I d i d n ' t b e l o n g  hospital  experienced  lives  and I b e l o n g e d  and f e a r  of  there  corner.  of  in  the  young  a prominent  caused  i n the  scared." A distinction  the  next  involve  and a n x i e t y  home w i t h my w i f e  scared.  procedures  fear  and  as when I was  with Crohn's disease or c o l i t i s of  horrors,  l u r k i n g around the  scared  in feelings  4.3  like  scary  increase  was  is  caused  by  their  hospital. a t work.  I  She  c a n a l s o be made  of medical t e s t s  while  i n the  tests  administered to  and  hospital.  Tests  There are a v a r i e t y  of  Crohn's disease or c o l i t i s . medical  tests  caused  remember b e i n g q u i t e these d i f f e r e n t theme i s  clearly  They wheel and i t ' s  was  s c a r e d about h a v i n g t o  tests."  In the  just  following  with  experiences fear",  undergo  statement  of  "I  all this  present: you i n t o  some room and t h e n t h e  l i k e that  v e r y new t o me. it  The p a r t i c i p a n t s '  an " o v e r w h e l m i n g s e n s e o f  unbelievably  instruments  those  scary. before.  I've  never  hell  begins,  seen  A l l these procedures  When I was d i a g n o s e d  one new s c a r y t h i n g a f t e r  with the another.  were  illness  The f o l l o w i n g s t a t e m e n t h a s made me e x p e r i e n c e way,  it's  unreal.  experience many o f  It  echoes t h i s a totally  theme,  "Crohn's  disease  different  reality,  and i n a  c e r t a i n l y was n e v e r p a r t o f my  b e f o r e h a v i n g C r o h n ' s . " The t e s t  experiences  t h e s e y o u n g a d u l t s were f r i g h t e n i n g b e c a u s e  n e v e r gone t h r o u g h a n y t h i n g l i k e them The t e s t s ,  yeah,  t h a t was r e a l l y s c a r y t o o  and were t h e y  scary.  when y o u h a v e a l i t t l e talking  about i t  It  because tests, taste  it  was  nauseous  that  fact  If  they  manner.  s o t h a t was s t r a n g e  like a l l really different.  stuff.  I'd  and t o  be  So, f o r me,  The b a r i u m  now t h e r e were some r e a l l y a w f u l o n e s , of  had  unbelievable  away f r o m i t ,  now i n a m a t t e r o f  when t h e y d i d l i k e a s c o p e ,  because  Wow, d i d  seems so  distance  they  before:  n e v e r done a n y t h i n g l i k e t h a t b e f o r e . hurt,  for  and  the  t h e d i s e a s e d i d n ' t make y o u  then those t e s t s  c e r t a i n l y would.  It  was  scary. Another p a r t i c i p a n t states, gone t h r o u g h t h e  stuff  "Fear,  I have t o  major f e a r .  now."  I never  Many o f  them  have  express  how t h e y h a d n e v e r e x p e r i e n c e d g o i n g t h r o u g h t h e s e t y p e s procedures before  4.4  Seeing  Seeing  and f o u n d them " v e r y a n x i e t y p r o v o k i n g . "  significant  significant  present  fear  colitis  causes.  of  others worry  o t h e r s worry can i n c r e a s e  and a n x i e t y  that  the  already  l i v i n g with Crohn's disease  The p a r t i c i p a n t s s t a t e t h a t  they  or  experience  fear  r e g u l a r l y and t o  enhances t h e i r people their  to  others  own f e e l i n g s  of  calm your nerves  nerves  from y o u . a  see  are shot too,  It's  little."  w o r r y i n g a b o u t them  "intense f e a r . "  but they  can't  and t h e y  almost  f u n n y how y o u a l m o s t  "You l o o k  h e l p you need  begin to  Another p a r t i c i p a n t states t h a t ,  faces d i d n ' t help  and o n l y c a u s e d me t o  a sick me.  "It  son  looks  these  hospital,  and I knew t h e y  b u t anyone who v i s i t e d  intravenous  and i t  gadgets.  others  My mom was he's  being very  scared.  She t r e a t e d  me t h i n k t h a t  have  were s c a r e d  that."  A l l of  all  scared,  them remember  scared:  Her o n l y c h i l d h a s  an i l l n e s s spoil  and  me  after  me d i f f e r e n t l y , and i n a way t h a t  there  for  "Not o n l y my  t h e y were  g o i n g t h r o u g h so much. Boy d i d she  that.  to  and saw me h o o k e d up t o  I was s c a r e d ,  k i n d o f went a r o u n d l i k e  significant  be more  must h a v e been h o r r i b l e f o r my p a r e n t s  i n the  role  on my p a r e n t s '  So I g u e s s I knew I s h o u l d be s c a r e d t o o . "  parents,  reassuring  " E v e r y t h i n g was  seeing the  fearful."  to  because  play that  v e r y new a n d s c a r y t o me, either,  only  was r e a l l y  something  to  be  made  afraid  of.  4.5  Feelings  The s t o r i e s  caused  by  p r o v i d e examples  strong  emotions  adults  l i v i n g with this  cause the  illness  cause fear  of  and a n x i e t y  illness.  p a r t i c i p a n t s to  situations  where  for these  Sometimes  have d i f f i c u l t y  these talking  various young emotions about  their  illness,  "I h a v e r e a l t r o u b l e d i s c u s s i n g  because,  as you can t e l l ,  attached  to  talk  about  it,  about t h e i r feelings"  it,  there  and t h e r e ' s  which they  so many o f  feelings  d i s e a s e b r i n g s up  illness  a r e many u n r e s o l v e d  just  n a t u r a l l y the  my  them.  feelings  So when  come up t o . "  I  Talking  "uncontrollable  do n o t want t o  experience:  I know I h a v e a r e a l h a r d t i m e t a l k i n g a b o u t my c o n d i t i o n without d o n ' t want t o so  I t r y not  of  all  getting  have t o to  talk  overwhelmingly  always about  these feelings  with,  it.  inside  s u c h a new and d i f f e r e n t  and t h e y make me v e r y  and I t h i n k i t  moment I  started  of  scary  stuff  of  all  other just  emotions saying  the  that  me.  to  "There's a l l  other  p a i n i n my s t o m a c h .  h a v i n g C r o h n ' s has caused  scary.  feels  Rolling fear.  feel  that  feel  s c a r e d and u n s a f e  through l i f e Fear of  the  is  with  lots  scared  and a l l i n me."  My body i s  t h e i r body i s  the  So t h e r e ' s  These young a d u l t s  that's  stuff  b u i l d i n g from  " I ' m s c a r e d o f my a n g e r  stuff  are  deal  this  I have C r o h n ' s d i s e a s e c r e a t e s s c a r y  participants  of  sometimes,  A l l these f e e l i n g s  d i s e a s e and t h e n a l l t h e s e f e e l i n g s  person that  scared  and  fearful.  a l l started  down t h e r e . "  these feelings,  and t o n s o f this  feeling  I get  I  emotional,  a s p e c t o f my l i f e  Another p a r t i c i p a n t states that, down t h e r e  be g e t t i n g  emotional.  the "Even  feelings carrying  along with  it." A l l  c a r r y i n g around a itself:  c h a r a c t e r i z e d by a f a i r  d i s e a s e and f e a r  of  all  the  amount  feelings  the  disease causes.  having panic attacks up s c a r e d , what t o  I think i t ' s  i n an i n f o r m a l  and f e e l i n g  a l l this  almost  sense.  stuff,  I  like  still  wake  and n o t k n o w i n g  do.  An e x a m p l e o f  this  theme  from a m a l e p a r t i c i p a n t g o e s  as  follows,  "Not k n o w i n g what t o do w i t h a l l t h e s e f e e l i n g s  actually  t a l k i n g a b o u t them i s  carry  this  believe fear  stuff  that  a r o u n d from so many t h i n g s . "  their  in different You c a n g e t  illness types  of  it's  got  really  screw you up.  you t o  become  just  disease,  cause  feeling  that  Another  I  of  and t r y t o this  get  build  but t h i s  this  illness  that  I have f e e l i n g s  of  fear,  r i d of  it  and i f  on t o p o f  more u n b e l i e v a b l e  fear.  caused and t h e n  makes  there  and t h e n causes  goes around i n a  T h a t ' s how I s e e theme  to  has  If  kind of  is  vicious  it.  t o l d as  follows:  some h e a l t h y way. I don't get  I  way  F e e l i n g so much f e a r ,  f e a r and k n o w i n g i t ' s  Well  helps  become more aware o f what I ' m  scary stuff  going to  I'm s u r e t h a t  feeling  i l l u s t r a t i o n of t h i s  I'm t r y i n g t o  of  I mean  fear.  and i t  suppose.  a lot  f o r no r e a s o n .  I c e r t a i n l y wasn't  you see,  e v e n more f e a r , circle  so  like that.  f e a r because  them  areas:  Everything's fine,  feeling sense,  this  feel  a c t u a l l y f o r no r e a s o n ,  you've  You j u s t  A l l of  h a s c a u s e d them t o  nervous about t h i n g s  d o n ' t know i f  before.  h e l p i n g somewhat.  but  r i d of  feeling, There's  all  it  just  it's  e a c h o t h e r and c a u s e me  even  These overwhelming emotions to  d e a l w i t h and c a u s e  5. T h e e x p e r i e n c e s colitis many  can,  at times,  become t o o much  t h e s e young a d u l t s  to  feel  afraid.  o f young a d u l t s w i t h C r o h n ' s d i s e a s e  i n v o l v e a great d e a l of  change and a d j u s t m e n t  or  in  dimensions  Change and a d j u s t m e n t  is  another important aspect  with Crohn's disease or c o l i t i s . focussed  upon i n t h e  "I've  had t o  thing.  It's  The c h a n g e s different  like to  living  "I s o m e t i m e s  yourself  myself. as  different  life  and t h e  a patient."  I rarely  see  me,  s t r a n g e when y o u s t a r t Frequent v i s i t s  to  just  a b o u t e v e r y week.  take  c a r e o f me,  medical world.  to  independent.  adults:  a sudden I'm  I have t o  I haye t o  I was e v e r  was when I was v i s i t i n g someone i n the h a l l s .  in  see  and so y o u f e e l  The o n l y t i m e s  I'm a r e g u l a r face  changes  to medical  saw my d o c t o r and t h e n a l l o f  c a n n e v e r be t r u l y  hospital  i n how o t h e r s  them,  changes,  was s o m e t h i n g new f o r t h e s e y o u n g  office  ability  "new a n d  h a v e been " o v e r w h e l m i n g " f o r  changes It's  sometimes."  since  d o n ' t t h i n k I can handle a l l the  professionals  his  illness  a r e v e r y much  an o n g o i n g  t h e y h a v e had t o go t h r o u g h  in health,  how I s e e  a totally  just  the p a r t i c i p a n t s ' l i v e s  things"  living  and w r i t t e n n a r r a t i v e s .  a d a p t t o much new and i t ' s  developing t h e i r  changes  interviews  These changes  of  It's  r e l y on like  r e l y on in  his  you the  the  else,  really  in  a n d now different  when n u r s e s  recognize you,  or you b e g i n t o  feel  It's  new f o r me,  y o u h a v e y o u r own s u r g e o n . b u t an e x p e r i e n c e thing  i n my l i f e  I could l i v e without. and I h a t e  Another p a r t i c i p a n t states, my d a y t o d a y l i v i n g find  different  and d i f f e r e n t change  is  struggle  coping s k i l l s  it  is.  is  I used to it's  not  didn't about  eat  "It  I d i d n ' t eat  revolves  around foods  A n o t h e r example o f  this  with Crohn's disease, something t o t a l l y  theme  it's the  new f o r me,  a good t h i n g .  think  it  so m u c h .  11  just  and  that  I  day t h i n k i n g to  Now my w h o l e  I c a n and c a n ' t  eat,  and  them. is  expressed  by a p a r t i c i p a n t  and I sometimes  So i t ' s  t o my d i e t forget  " d r a s t i c a l l y . " As  is  to,  a huge c h a n g e t o h a v e  Crohn's disease or c o l i t i s  changed the p a r t i c i p a n t s ' l i v e s participant  eating  w e i r d . You a l m o s t h a v e  "Having t o pay a t t e n t i o n  which i s n ' t about  eat  in  when I w a n t e d ,  healthy,  and i t ' s  when I c a n and c a n ' t  anymore,  f o r them:  spend e v e r y minute o f  Now I d o ,  to  s u c h a new  S i g n i f i c a n t changes  become o b s e s s e d w i t h y o u r f o o d i n t a k e . life  is  I have  in  w i t h C r o h n ' s d i s e a s e and a  a n y t h i n g I wanted,  have t o  new  to deal with." "Dealing with  something d i f f e r e n t  like  it.  somehow a d a p t .  I d o n ' t e v e n know what I c a n e a t  s i m p l e as t h a t . "  also  a huge  h a s c a u s e d huge c h a n g e s  for l i f e . "  o f my l i f e  an o n g o i n g s t r u g g l e  s o m e t h i n g as habits  "It  It's  it.  and have t o  aspect  definitely  like  to  has  this  emphasizes:  I n e v e r y a r e a o f my l i f e  this  d i s e a s e has c r e a t e d  huge  changes  and I ' m o n l y now r e a l i z i n g how t h e y  affected the  me. A c t u a l l y  I still  long term a f f e c t s  of  don't  have  r e a l l y know what  a l l t h e s e changes  are going  to  be. Another p a r t i c i p a n t states that, this  w o r l d change  and i t ' s the  being diagnosed with t h i s  probably going to  following I've  be a l i f e  statement t h i s  always  theme  and i t ' s  a b i g way t o  clearly  the point of  The p a r t i c i p a n t s ' p e r s o n a l i t y c h a n g e d and a d j u s t e d s i n c e  illness,  c o u l d adapt t o  I'm sure  it's  of  In  present:  a good t h i n g b e c a u s e  adapt to with C r o h n ' s .  out  long adjustment."  is  been a p e r s o n t h a t  situations, to  since  "I h a v e e x p e r i e n c e d  most  there  is  affected  lots  me i n  c h a n g i n g me a s who I am. is  another t h i n g t h a t  has  developing Crohn's disease  or  colitis: I think i t ' s have  it  affect  t o l d me t h a t w i t h them. live  that  and n o t  People  I h a v e c h a n g e d as a p e r s o n and I  also  isn't  b i g g e s t change  have  necessarily  become more t i m i d ,  is  have agree  I probably  a bad t h i n g e i t h e r ,  w h i c h I do j u d g e a s  the but  a  thing.  t h e s e young a d u l t s they  disease  who y o u a r e i n some way.  I guess the  That  negative All  t o have t h i s  more f o r t h e moment and d o n ' t p l a n a s much f o r  future. I've  impossible  stated  adamantly,  "without  a doubt,"  "changed i n many w a y s . "  Going through everything involved i n having disease or c o l i t i s  is  " o v e r w h e l m i n g l y new" t o  Crohn's  these  young  adults  and h a s  lives.  Having to  start  caused  different  routines  You g e t get  It  created  up i n t h e  plenty  of  i n the  sleep,  I never  getting  thought  changed the  sick  of  has  altered is  before  Crohn's,  and t h a t  and i t  life,  is  5.1  has  the  c h a n g e d my  generally, just  and y o u n e e d t o This  is  all  have stuff  has  life.  having Crohn's disease  "it's  truth.  basically of  the  or  c h a n g e d my  one  I had  The t r u t h i n l i f e  much more p a i n f u l  "I am f a c e d w i t h s o m e t h i n g w i t h and i t  stuff.  so C r o h n ' s c e r t a i n l y  barely a reflection is  You  be so p l a n n e d o u t ,  out or something.  state that  "My l i f e  this  or something,  their  eat  go t h r o u g h :  has t o  before,  life."  changed,  all  way I d e a l w i t h my  t h e s e young a d u l t s  colitis  it  you  your m e d i c a t i o n .  g o e s o u t t h e window,  seems l i k e  some way o f  of  f o r them t o  kind of  c a s e you get  has  lives:  y o u have t o make s u r e t o  be r e a l l y c o n s c i o u s  in  participants'  and t h e n y o u t a k e  a " b i g change"  their  m o r n i n g , y o u h a v e t o make s u r e  have t o is  of  l i v i n g with a chronic disease  foods,  everything  has  i n many d i m e n s i o n s  certain  Spontaneity  All  change  now  t h a n what  it  was."  v e r y new and u n p l e a s a n t  to  deal  life."  Self  "My p e r s o n a l i t y developing  is  another  thing that  has  changed  C r o h n ' s d i s e a s e . " T h e s e c h a n g e s and  in personality  are c l e a r l y  spelled  out  i n the  since  adjustments stories:  I've  c h a n g e d as a p e r s o n ,  try  to  enjoy  the  that's  good.  But t h e r e ' s  socially life  scared,  and more o f  changes  since  a completely  I have t o  their  so much b a d ,  being l e s s of an o b s e r v e r .  t o who I was as  These young a d u l t s as p e o p l e  things  and some good and some b a d .  like  an a c t i v e  of  they  "definitely  person because  t h e s e changes  a b o u t me w h i c h i s  changed"  in self  they  feel  "I'm  I know  expresses  the  thus: people  can handle a l l the  i n v o l v e d w i t h my d i s e a s e ,  k i n d o f w e i r d , b u t t h a t ' s t h e way I ' v e  I need t o to  have  o f my d i s e a s e ,  t a k e s me l o n g e r t o t r u s t know t h a t  in  core  developing Crohn's disease or c o l i t i s ,  I think i t  it's  participant  a person.  state that  different  I need t o  and  b e i n g more  These are a l l  I have changed." A p a r t i c i p a n t w i t h c o l i t i s effects  fullest,  I  comfortable with a person i f  now  because  gross  stuff  and I know become I'm  now.  going  spend t i m e w i t h them.  Another p a r t i c i p a n t states I'm s c a r e d of know why.  that:  so many t h i n g s  now,  W e l l know t h a t ' s n o t  some o f  the  illness  that  reasons  why,  could rear  entirely  such as its  and I d o n ' t true.  I'm l i v i n g  u g l y head a t  gone t h r o u g h so much and I d o n ' t  really I do know  with  an  any t i m e .  r e a l l y want t o  I've  go  t h r o u g h anymore. A n o t h e r example o f  this  theme  is  g i v e n by a  p a r t i c i p a n t who t o l d o f h e r e x p e r i e n c e s So maybe I ' v e  also  become more o f  as  female follows:  an a v o i d e r o f  things,  especially  unknown t h i n g s ,  much unknown i n my l i f e , change just  i n way o f  all  they  is  changed"  same p e r s o n I was,  p e r s o n I was.  by t h a t inside  c o r e o f who y o u a r e .  are " d e f i n i t e l y  "I'm not t h e  anxiety  So t h i s  I could just  myself  to  become more o f  an e s c a p i s t ,  more.  avoid having that  happen,  statement echoes t h i s harder to  When y o u ' r e s i c k y o u s t a y  inside  cause of  get  to  continues  that  because  My d i s e a s e has  is  I developed  as  about an  is  bad  a person,  you're  their  sick.  illness.  Crohn's,  Now i t ' s  a g a i n . " The f o l l o w i n g  e l a b o r a t i n g on t h i s  being  an  y o u r s e l f m o r e . " They  comfortable with myself. place  become  "I t h i n k I ' m more  be o u t t h e r e  t h e s e changes  "I was way more o u t g o i n g b e f o r e completely  going  an e x t r o v e r t  theme,  and y o u d o n ' t h a v e a s much c o n f i d e n c e  to  and s o  I s p e n d more t i m e on my own.  the  but  I mean  do c a r e enough  enough.  it's  from a  and what  I probably could e a s i l y  i n t r o v e r t when I was once  that  theme  not t a k i n g drugs or a l c o h o l ,  now b e c a u s e  without  follows:  extreme  The f o l l o w i n g  sometimes  life  i n s i d e . " An example o f t h i s  myself  people  and I  live  a l c o h o l i c o r something but I s t i l l  emphasize  a  changes  I know I ' v e  was  definitely  so  change y o u r p h y s i c a l b e i n g but I t h i n k i t  m a l e p a r t i c i p a n t g o e s as  lonely  already  doesn't  f o r the this  is  is  disease  They s t a t e t h a t  long  there  and t h i s  b e i n g f o r me.  y o u r i g h t down t o t h e  "inside."  because  a  and I struggle  statement  theme:  a l t e r e d my p e r s o n a l i t y  because  I  can  never r e a l l y  feel  comfortable  safe with  and I o n l y  around c e r t a i n people.  a r e two b i g words It's  it,  i n my l i f e .  feel  S e c u r i t y and  comfort  E s p e c i a l l y when I ' m  a m a z i n g how when I ' m f e e l i n g  b e i n g becomes more s i m i l a r t o  better  the  that  way I was  sick.  my way  of  before  d e v e l o p i n g my d i s e a s e . Another  i l l u s t r a t i o n of  c a n be two d i f f e r e n t  this  theme i s  people,  t o l d as  sometimes t h e  be c o n f u s i n g .  I t h i n k t h e s e changes a r e d e f i n i t e l y  the  experiences  colitis very  is  involved  some change  Crohn's disease."  vigor  in having Crohn's disease  in their personality,  it  "I s u p p o s e  depressive  more d e p r e s s e d  and l a c k o f m o t i v a t i o n  or something  for  life,  for  that's  adamantly a s s e r t ,  they  i n many  6.  "changed  The e x p e r i e n c e s  colitis their  one  for of  or become  developing a way  You know,  of that  "without  a doubt,"  that  ways."  young a d u l t s  include deprivation of  with Crohn's disease  some o f  their  control  or  over  lives  The p a r t i c i p a n t s their  of  life.  is  hard  can  r e a l l y changed." A l l of  t h e s e young a d u l t s have  "I've  since  blah  and t h i s  a r o u n d me." The p a r t i c i p a n t s s t a t e t h a t  i n t r o v e r t e d and somewhat  putting  person,  '.'I  quiet,  well,  people  energetic  sick,  person or the  the  outgoing,  follows,  state that  there  l i v e s with having t h e i r  related  stories  i n v o l v i n g the  is  "little  illness. feeling  control"  These young of  being  over  adults  "deprived of  some o f since  the  c o n t r o l " over v a r i o u s  developing  Crohn's disease or  C r o h n ' s has to  own p l a y o f my l i f e ,  rampant  i n my e x p e r i e n c e .  does i t s  own t h i n g now,  They a l l  Like  well  their  lives  colitis:  t a k e n so much from me,  d i r e c t the  disease  aspects of  i n c l u d i n g my a b i l i t y and t h i s  is  so  f o r my b o d y ,  it  just  not  its  own t h i n g b u t  its  thing.  l o n g f o r more c o n t r o l o v e r t h e i r  body and  their  illness: I do s e a r c h o u t control  t o my l i f e ,  sometimes i t ' s I  just  as many ways as p o s s i b l e and sometimes i t ' s  not very s u c c e s s f u l .  f o o l myself  to  a d d more  good,  and  Actually,  into thinking I've  generally  gained  control  of  my d i s e a s e . F o r many o f  the  successful,  so  their  bodies  life."  far,  control  it  and t h e i r  does,  anyway.  illness,  "it's  where  colitis  things.  It  It's  easy to  g i v i n g up,  not v e r y good, some o f  their  d i r e c t i n g my l i f e . " will  seems t o  t h a n I do a t  "I t r y ,  the  a l l o w me t o  but  that  been over  controls it  you d o n ' t  c o n t r o l over  have  illnesses  their  "Where I want t o  go may be two  your  do  I know." T h e i r  go  and  different  h a v e much more c o n t r o l o v e r my l i f e  moment." By r e a d i n g t h e i r  d i s c e r n the  it  and l e t t i n g  because you r e a l i z e  d e p r i v e d them o f  lives,  have  i n h e l p i n g t o g a i n more c o n t r o l  "You end up j u s t  whatever  have  p a r t i c i p a n t s n o t h i n g seems t o  stories  "decrease i n c o n t r o l " they  it  path is  experience.  6.1  Weight  As s t a t e d stories the  above,  t h e p a r t i c i p a n t s have r e l a t e d  i n v o l v i n g the  feeling  several  of being "deprived of  c o n t r o l " over v a r i o u s aspects of t h e i r  lives  some  since  developing Crohn's disease or c o l i t i s .  These f e e l i n g s  i n d i f f e r e n t ways,  one o f w h i c h i s  "loss of c o n t r o l "  over t h e i r weight.  "One month I ' m c l o s e  and t h e  next  I c o u l d have l o s t  the  t o my i d e a l  ten pounds.  F o r me t h a t ' s  command" o v e r o n e ' s w e i g h t ,  h a s c a u s e d my w e i g h t participant If  fluctuate  just  "This  f o r c e m y s e l f t o do t h i s ,  l i k e that.  illness  sometimes weight  You d o n ' t r e a l l y h a v e much c o n t r o l o v e r  especially  if  where most o f what y o u e a t The e x p e r i e n c e s  and I  I could lose  y o u ' v e had o p e r a t i o n s  remove some o f y o u r s m a l l i n t e s t i n e , is  because  that's  o f young a d u l t s w i t h C r o h n ' s d i s e a s e  c o n t a i n d i f f i c u l t y i n t h e management o f  weight,  "I l o s t  weight.  Sort of  l i k e on a r o l l e r  y o u ' r e f e e l i n g w e l l you g a i n w e i g h t , you. I was l o s i n g w e i g h t  e v e n c a r e about my w e i g h t  if  before  coaster. it  I knew i t . "  anymore, r e a l l y .  an a f f e c t  or  their  you're not  r e a l i z a t i o n t h a t y o u c a n ' t do much a b o u t i t , about i t " ? They b e l i e v e  to  taken i n t o your body.  colitis  don't  such a  indicates:  I suppose,  peels off  is  not  quite a b i t . " Another  I d o n ' t eat meals every t h r e e h o u r s ,  have t o  it  to  emerge  weight  a g o o d t h i n g . " T h e s e young a d u l t s s t a t e t h a t t h e r e " m i n u t e amount o f  of  If  just "I  '  You come t o  s o why o b s e s s  of h a v i n g C r o h n ' s  disease  or c o l i t i s and t h e y  is  that  experience  much c o n t r o l  7.  Types of  Feeling their  is  effects.  further  another  i n my t i m e ,  this  now h e r e  Drugs  All  participants  have  very  involved  the  in  having  participants  experienced  experience  some f o r m o f  don't  "one o f  illness.  a lot  the  of  know  have a f f e c t e d  v i o l a t i o n as  continue  their  me." Many hardest  to  is  some f o r m o f  from t h e  "You pop a l l t h e s e p i l l s , back of  and I d o n ' t  These young a d u l t s  s k e t c h more c l e a r l y  two  "violation.":  experienced  " v i o l a t i o n " mentioned  you s c r a t c h the  violated  and I s t i l l  aspects of having t h e i r  sharp-like,  don't  often  with."  7.1  on,  change  aspects of having t h e i r  c a u s e d me t o  sub-themes of  different  experience  B u t I s u r e know t h e y  deal  I will  they  f r o m some s i t u a t i o n  has  them p o i n t t o to  something  include feeling  from d i f f e r e n t  degrading things  things  as  A l l t h e s e young a d u l t s  "Having c o l i t i s  of  this  experiences  illness,  "assault"  causes t h e i r weight to  over.  "violated"  encounter.  true  it  tell  illness.  "violation" One t y p e  drug plans  and some o f  they  them a r e  your t h r o a t w i t h them. understand the many s t o r i e s o f  reason  from  of  are  put  so  big  Some a r e for  " a l l the  that." strange  even  143  medications" things  to  they  are put on,  "I t h i n k one o f  d e a l w i t h i n t e r m s o f my i l l n e s s  various different following  medications,  statement t h i s  theme  the  hardest  was b e i n g  on  especially  steroids."  In  is  present:  clearly  So y o u ' r e p u t on d r u g s t o h e l p b u t t h e n t h e r e the  side  for  to  effects  that  counteract.  into  all  you have t o t a k e d i f f e r e n t  I d o n ' t know how t o  feel  body anymore when I h a v e t o p u t a l l t h e s e substances  are  the  drugs  a b o u t my  foreign  it.  The p a r t i c i p a n t s e m p h a s i z e "a v e r y d i f f i c u l t a s p e c t "  b e i n g on v a r i o u s m e d i c a t i o n s of having Crohn's disease  as  or  colitis: Sometimes  I j u s t want t o  know i n t h e still all  They see their  these drugs, because  got  That s t u f f  is  young a d u l t s with."  long-term a f f e c t s  but  a lot  weak,  I  taking  of  them a r e p r e t t y  new.  as h a v i n g a " l a r g e and my f a c e  effect"  this  and t h e  people  v i o l a t i o n as  on  puffed up,  I even e x p e r i e n c e d b i z a r r e mood  h a r d on y o u , point to  of  I  and I d o n ' t t h i n k a n y b o d y r e a l l y  "I was t a k i n g s t e r o i d s  my m u s c l e s  deal  the  these drug treatments  bodies,  pills,  end t h a t w o u l d be t h e wrong d e c i s i o n .  worry though of  knows,  stop t a k i n g the  swings.  around y o u . "  "a h a r d t h i n g  These to  7.2  Medical  As s t a t e d  procedures  above,  "violation" Another  from v a r i o u s a s p e c t s o f h a v i n g t h e i r  form of  " v i o l a t i o n " mentioned i s  procedures they This  a l l p a r t i c i p a n t s e x p e r i e n c e d some t y p e  is  tests  still  that  really  have n i g h t m a r e s r e l a t e d t o  I went t h r o u g h i n t h e h o s p i t a l , l i v e with i t  difficult.  It's  "Desecration" participants  I find  I  some o f and I  this  the  don't  really,  e x p l a i n because  it  was  something  the  healing.  from t h e m e d i c a l p r o c e d u r e s i s experience:  I d o n ' t know what i t ' s h o r r i b l e because  l i k e f o r a male,  makes i t  even worse,  b u t f o r a woman  g e n e r a l l y the doctors are male,  and I know t o them i t ' s  felt  really.  hard to  done i n t h e name o f  it's  from t h e m e d i c a l  are put through:  know how t o  all  illness.  r e a l l y d i f f i c u l t t o t a l k about because  sometimes  of  just  a job,  I d o n ' t know.  b u t maybe  that  I do know t h a t  c o m p l e t e l y r i p p e d a p a r t by some o f  I  those  experiences. Another p a r t i c i p a n t states that, shame,  and agony,  sub-theme  is  experiences  all  about  g i v e n by a f e m a l e p a r t i c i p a n t who t o l d o f as  of  this her  follows:  but then y o u ' r e l e f t  affects  it's  and h u m i l i a t i o n . " A n o t h e r e x a m p l e o f  You go t h r o u g h t h e s e t h i n g s help,  "I f e e l  these things,  i n order to  find  ways  to  with having to deal with  and t h e y ' r e  all  pretty  the  horrible.  The d i s e a s e  those t e s t s  are something  These young a d u l t s p o i n t t o that  they  itself  had t o  is  b u t wow,  else.  the v i o l a t i n g medical procedures  go t h r o u g h as a d i f f i c u l t e x p e r i e n c e  having Crohn's d i s e a s e or c o l i t i s , test."  bad e n o u g h ,  "Gross t e s t  after  gross  "I n e v e r e v e r t a l k a b o u t what h a p p e n s b e h i n d t h o s e  closed h o s p i t a l doors,  and what i t ' s  like.  I think  would s q u i r m . " They emphasize the v i o l a t i o n t h a t "They saw a body t h a t things  to  be a b l e t o  lights  p o k e d up i t . "  was somebody e l s e ' s body f o r a w h i l e . "  8.  The l i f e  discussing  experiences  include feeling  end t h i s  anger.  they  "It  takes  experiences  a n g r y . Y o u ' v e been r i p p e d  t i m e . " The p a r t i c i p a n t s " f e e l  rage",  o r you get  angry,  sometimes  the  choice.  is  "feel  better  angry" because,  or c o l i t i s ,  "life  is  a great  "I remember  t a k e n so much away from y o u ,  be d e p r e s s e d  since  very hard."  is  fold  harder.  I'm r e a l  angry t h a t  get  " I ' m mad b e c a u s e  I have t h i s  angry." disease  my o l d  that  damn  either  angry  developing Crohn's  was t a k e n from me and r e p l a c e d w i t h a l i f e  big  feeling  so  life  of  off  so y o u c a n  hard,  with  deal  and I t h i n k g e t t i n g Life  by  of young a d u l t s  anger.  "Of c o u r s e y o u f e e l  like  anger  include feeling  "It's  a  "General S t r u c t u r e " s e c t i o n  The l i f e  shove  It's  Crohn's disease or c o l i t i s  angry."  felt,  and  c o n n e c t w i t h y o u r body a g a i n .  it  I would l i k e t o  people  c o u l d be t u r n e d u p s i d e down,  up and down i t ,  while  They  in  is  ten  disease."  These young a d u l t s "easy t h i n g s colitis, body,  "feel  a n g r y " when t h e y  were" b e f o r e  "Sure t h i n g s  t h e y had C r o h n ' s d i s e a s e  were e a s i e r  b u t C r o h n ' s has t a k e n t h a t  h a v e an i l l n e s s  that  I'll  t h i n k about or  when y o u h a v e a away from me,  have f o r t h e  rest  how  healthy  and now I  of  life.  Yeah,  I'm a n g r y . " Several because  of  really to  of  the  still  t r y i n g t o do c e r t a i n t h i n g s  wanted t o ,  live  although others  a different  disease or c o l i t i s . their  life  lifestyle  that  that  conflicts they  them t h a t  they  now t h a t  t h e y have  Crohn's  and had f e e l i n g s  of  continue anger  have  in  all  towards  a r g u e d w i t h them and t o l d them t o  restrict  activities: O t h e r s a r o u n d me,  i n my l i f e ,  plans  on w i t h u n i v e r s i t y and s t u d y i n g  i n the  to  continue  fall  because  angry because the  several  d i d not q u i t e  o f my c o l i t i s ,  I wanted t o  and t h a t  and was g o i n g t o  l i k e my again  made me continue  in  fall.  A l t h o u g h angry because  of  being t o l d to  p a r t i c i p a n t s appeared to  probably necessary about h a v i n g to of  angry  tell  Many o f them wanted t o  activities  other people their  p a r t i c i p a n t s experienced  think that  "I am g o i n g t o  they're  likely  activity,  this  was  no m a t t e r what t h e y  r e s t r i c t my a c t i v i t i e s .  me t h i n k s t h a t  limit  Unfortunately,  right."  D e a l i n g with t h e i r d i s e a s e causes f e e l i n g s  of  irritation: Dealing with this  whole t h i n g  is  a hassle.  It's  say part  frustrating like  that.  because i t  t a k e s you out  You c a n be l i v i n g ,  sick,  and end up i n t h e  mild.  I hate  it,  hate  The f o l l o w i n g  statement continues  "I d o n ' t  being  like  and I have to  deal  to  deal with  with,  participants difficult  angry,  and t h a t "feel  life  is  it.  your l i f e ,  doing your t h i n g ,  hospital.  hate i t ,  of  hate  elaborating  on t h i s  b u t sometimes I c a n ' t another  to  it.  help  thing  I  makes me e v e n more a n g r y . " T h e  a n g r y " when t h e y t h i n k a b o u t now."  get  Being angry sounds  it,  Oh g r e a t ,  just  "how  theme, it, have  CHAPTER  FIVE  Discussion  The  present  chapter w i l l  important question restatement,  study.  from t h e  Finally,  the  investigation  issue of  of  the  life  or  colitis.  of  life  the  also  experiences  of  results  be  covered.  implications,  study w i l l  the  this  be  c e n t r a l importance i n t h i s  as  well  discussed. s t u d y was  o f young a d u l t s w i t h C r o h n ' s  that  disease  Several i n v a r i a n t threads ran through the  experiences  experiences  of  d e s c r i b e d by r e s p o n d e n t s .  The  study,  common t h e m e s .  types  life  young a d u l t s w i t h C r o h n ' s d i s e a s e o r  as d e s c r i b e d i n t h i s made up o f  will  r e s e a r c h and c o u n s e l l i n g  p e r s o n a l meaning o f t h i s  The  Along with  a summary and d i s c u s s i o n o f  obtained  as t h e  in this  include a restatement  colitis,  h a s been c o n c e p t u a l i z e d a s  Unpredictable activation  of  symptoms o c c u r r e d f o r t h e p a r t i c i p a n t s o f t h i s  study,  and  process  l o s s was a n o t h e r component r e p o r t e d i n t h e  living  with Crohn's disease or c o l i t i s ,  performance a b i l i t i e s , enjoyable involved  activities. a notable  participants illness, others  of  The e x p e r i e n c e s  lowering of  emphasized f e e l i n g the  worry,  illness.  body and p o s i t i v e  hospital,  and o f  of  either  adults  In t h i s  seeing  overwhelming f e e l i n g s  f o r t h e s e young a d u l t s ,  of  t h e s e young  -  inquiry  over  their  significant  c a u s e d by  Change and a d j u s t m e n t was d e s c r i b e d a s  experience  of  or  fear or anxiety of  Grief  body i m a g e ,  self-esteem.  over t e s t s ,  being  their  a common  i n c l u d i n g changes  in  certain  aspects  experiences  of t h e i r p e r s o n a l i t y . P a r t i c i p a n t s '  i n v o l v e d major changes:  p e r s o n a l w h i c h t h e y had t o of  some o f  their control  r e p o r t e d as control  academic,  attempt to  adjust to.  over t h e i r l i v e s  an e v e r p r e s e n t  over t h e i r weight.  ordeal,  social,  was  and  Deprivation  frequently  including  loss  of  A n o t h e r common e x p e r i e n c e  t h e s e y o u n g a d u l t s came i n t h e  form o f  feeling  for  violated,  i n c l u d i n g v i o l a t i o n f r o m many o f t h e m e d i c a t i o n s t h e y  took  into t h e i r bodies,  they  and many o f t h e m e d i c a l p r o c e d u r e s  were p u t t h r o u g h . A n g e r was a p r e v a l e n t f e e l i n g persons final  in this  s t u d y and h a s been l i s t e d  main g e n e r a l It  is  m e n t i o n e d by a l l  as t h e  the  e i g h t h and  theme.  important to  s t r u c t u r e themes,  for  note  feeling  t h a t o n l y one o f  a great deal of  1 0 participants. Also,  the  anger,  general was  a l l themes  for  p a r t i c u l a r p a r t i c i p a n t s have a p r o p e n s i t y f o r b e i n g experiences. of  F o r example,  the  not these  negative  c o n s t a n t l y accompanying t h r e a t  the  u n p r e d i c t a b l e occurrence of  symptoms c a u s e s w o r r y a n d  stress  i n the p a r t i c i p a n t ' s l i v e s .  While the  grief  and l o s s c r e a t e s  lowering of  self-esteem  sadness  experience  and " d e p r e s s i o n " .  The  of  serious  c a u s e s damage t o t h e way t h e y  view  themselves. T h e r e were no r e p r e s e n t a t i v e d i f f e r e n c e s the  experiences  participants. noted.  of  between  female p a r t i c i p a n t s and male  However, t h e r e were two m i n o r  The f i r s t  found  involves  differences  female p a r t i c i p a n t s , i n g e n e r a l ,  p l a c i n g more e m p h a s i s on t h e  experience  of  feeling  violated.  A l t h o u g h a l l t h e s e young a d u l t s mentioned being v i o l a t e d ,  the  female  participant may a f f e c t  than the males.  concerns  of  fear  provide basic the  those i n v o l v e d i n the These  of  a young  findings  influences  components  This  colitis  is  l i v e s of  that  in this  out  that  study  disease or c o l i t i s  stories is  the  with  see  intervention these  in increasing  awareness  has  on t h e  life  of  constant  lives  and  the  adjustments.  work o f managing C r o h n ' s d i s e a s e  life  the  a matter  important to  of  "illness  context of  stories  of  is  living.  with Crohn's many  people  demonstrated  in  all  here.  consider  context of  Young a d u l t h o o d i s  well  that  and  management."  everyday  people  negative effects  considered  s t o r i e s w i t h i n the stage.  of  c o s t s a c c r u e d by t h o s e  with these diseases experience  It  people  t h e y must make i n t h e i r  more t h a n j u s t  Through t h i s  the  focus  to  with  us t o  study d e s c r i b e d the  The work t a k e s p l a c e w i t h i n t h e  of  illness  living  in turn allows  can a s s i s t  and p s y c h o l o g i c a l  points  female  adult.  accommodations  It  of  Crohn's disease or c o l i t i s  The p a r t i c i p a n t s  social  second  o v e r how h e r  w h i c h p a r t i c u l a r v a r i a b l e m i g h t be t h e  the  this  information which h e l p s  specific  Crohn's d i s e a s e or c o l i t i s .  of  of  having c h i l d r e n .  u n d e r s t a n d some o f  diseases.  The  comments made by one  regarding feelings  These r e s u l t s  for  feeling  p a r t i c i p a n t s e x p a n d e d on  theme much more f r e q u e n t l y recorded difference  the  the  participants'  their particular  life  developmental  f r e q u e n t l y d e s c r i b e d as  a period  of  development  transitions taking  d u r i n g which dramatic l i f e  occur.  Young a d u l t s  on new s c h o l a s t i c  obligations,  and s o c i a l  are g e n e r a l l y  networks.  a decrease  and s c h o o l , All  in their  as p o o r .  experienced  the  such  social  at  work  activities.  sample.  the  since  of  at  of  intrusions  ten  time  of  the  feeling  never  reported that  being diagnosed  i m p o s e d by i t s  the  they  found  were and  their  with Crohn's disease limitations  activities.  either  they  i n everyday a c t i v i t i e s  They i n d i c a t e d t h a t  enjoyable  notion that  In l i g h t  illness  management  functioning  and d i s r u p t n o r m a l l i v i n g  al.,  The g r e a t e r  1982).  the  the  remission.  on C r o h n ' s d i s e a s e and c o l i t i s  restrictions  the  p a r t i c i p a n t s had  c h a r a c t e r i z e d by n e g a t i v e  experience  Nine of  t h e s e young a d u l t s  existence. past,  may be due t o  Most d e s c r i b e d t h e m s e l v e s as  Many o f  p l a g u e d by a v e r s i v e  how t h e  They  Other L i t e r a t u r e  In g e n e r a l ,  reviewed  of  any p e r i o d s  Comparisons t o  colitis,  in their  appraised their health,  and i n p a i n .  recent  lives.  involving  for being negative experiences  homogeneity  interview,  regular  talked  i n t h e i r performance a b i l i t i e s  and a d e c r e a s e  participants  sick  personal  themes f o r t h e s e p a r t i c u l a r p a r t i c i p a n t s h a v i n g a  propensity relative  with  The p a r t i c i p a n t s  d e s c r i b e d numerous n e g a t i v e e x p e r i e n c e s as  faced  o r employment demands,  a b o u t many c h a n g e s and a d j u s t m e n t s  things  c h a n g e s and  frequency of  on  of  the  research  these findings itself  show  or  may i n t e r f e r e (see  or  Steinhauer  disturbance  with et  i n normal  activity  of young a d u l t s w i t h a c h r o n i c i l l n e s s  further  established  described regarding feelings  that this  participants.  The r e s u l t s  demands o f  (Steinhauer et present  a disease al.,  on a n g e r a r e c o n s i s t e n t of  chronic i l l n e s s  1982).  fit  of  c a n be s e r i o u s l y  limited  i n the  or  colitis  shown  a major s o u r c e o f  (i.e.  illness  the  anger.  Steinhauer et  r e g u l a r l y encounters having t o  o f work when t h e i r  participants  in  w i t h r e s e a r c h t h a t has  t h a t upward m o b i l i t y i n w o r k , o f t e n  time o f f  w i t h work  Many o f t h e y o u n g a d u l t s  c o n j u r e d up f e e l i n g s  An i n d i v i d u a l  the  c a u s e d f r u s t r a t i o n and r e s e n t m e n t  The c u r r e n t f i n d i n g s  esteem,  anger  i n which  s t u d y a c c e n t e d how h a v i n g C r o h n ' s d i s e a s e  frequently  of  was a v e r y p r o m i n e n t e m o t i o n f o r  done on p s y c h o l o g i c a l a s p e c t s  1982).  worthy of  attention.  The e x p e r i e n c e s  the  is  acts  selfal.,  take  u p . The  c u r r e n t s t u d y spoke o f t e n  work p e r f o r m a n c e was s u b s t a n t i a l l y a f f e c t e d  of  how t h e i r  by t h e i r  illness. Prior frequently  r e s e a r c h has elicits  indicated that  d i s c o m f o r t from o t h e r s ,  serious  blow t o t h e p e r s o n  present  data depict t h i s  (Steinhauer et  i m p a c t on t h e i r  illness  it al.,  may p r o v e a 1982).  or c o l i t i s  from O t h e r s and how t h i s  The  commonly  h a d an enormous  self-image.  The y o u n g a d u l t s issues  an  i n d i c a t i o n . Many p a r t i c i p a n t s  e m p h a s i z e d how h a v i n g C r o h n ' s d i s e a s e evoked uneasiness  if  in this  involving feelings  present  study t a l k e d about  of uneasiness  around people  and  153  how t h i s of  was  some o f  one  of  their  the  contributing factors  self-esteem.  made by S t e i n h a u e r  et  al.  This  (1982)  is  that  suggest  that  contribute  an a l i e n a t i o n  help  assistance,  f o r the  social  appears  to  relationships.  have an e f f e c t  Many o f  at  functions  of  interpersonal  comfortable  can i n c r e a s e  integration  can p r o v i d e a source  a sense of  stability  self-worth. have the that  effects  management,  on s e l f - e s t e e m , capability  of  (Lynam,  research  felt  situations,  influences  interacting 1990).  of  felt  of  life,  (Wills,  in  looking  relationships, are supportive  and  Social  positive  affect,  and a r e c o g n i t i o n  1985).  Previous  perspective of  negative effects  it  in social  the  a young  settings,  can  research  impact  negatively  of  cause d i s c o m f o r t  from t h e  indicated that  confidence  their  feeling  self-esteem.  that  and t h e  the  of  (1985),  general  The p a r t i c i p a n t s  a lack of  they  of  relationships  with cancer,  c a n c e r and i t s  that  relationships  examined s o c i a l  young a d u l t s  ones  i n one's  However,  opposite  feelings  of  Wills  relationships  by  on s e v e r a l  them s p e a k  situations.  social  source  self-esteem experienced  in social  suggests that  offered  person.  uncomfortable supportive  reports  d i s e a s e may  c o u l d be a s i g n i f i c a n t  The d i m i n i s h m e n t of participants  the  from p e e r s who,  chronically i l l  lowering  to  or h u m i l i a t i o n because of  appropriate  a  parallel  embarrassment to  to  of  has  adult's especially  i n Lynam's  (1990)  i n a p p r o a c h i n g new  " v u l n e r a b l e " and " e x p o s e d " .  new  social  Many o f  the  young a d u l t s  interactions This  i n the  worth appears to  feeling  (1990)  be a f f e c t e d ,  experienced  stigmatized.  research,  by t h e i r  between s o c i a l  found  competence  in part,  by t h e  C r o h n ' s d i s e a s e and c o l i t i s .  participants to  study a l s o  social  difficult.  connection  nature of  present  For the  establishing  i n the  differently  the  perhaps  in  was  own a p p e a r a n c e s .  hindered  Some o f  often  causes others  to  look at  chronic  f r e q u e n t l y evokes u n e a s i n e s s i n o t h e r s  illness  of  out t h a t  prevent  how t h e y  participants point to  i m p a c t on t h e i r  t r y hard to  of  stigmatization  in their  sense of  writings  on s o c i a l  can c r e a t e  the  self-worth. support,  potential  in their  appears to  them  avoid having  social  system.  b a d a b o u t t h e m s e l v e s and i n f l u e n c e s social  p a r t i c i p a n t s have a l s o  in  activities.  experienced  the  Some  to  reactions  his diseases  individuals  present  their  and  a diminishment  D i s c o m f o r t from i n the  their  i n order  the view t h a t  for a l i e n a t i o n of  of  people  these  Norbeck (1981),  make t h e y o u n g a d u l t s  regarding decreasing  because  and c r e a t e  presents  how  self-esteem.  t h e y h a v e one o f t h e s e d i s e a s e s  any u n c o m f o r t a b l e r e a c t i o n s ,  cause f e e l i n g s  persons  the  causes a negative  them t e l l  find  of  w h i c h b r i n g s a b o u t e m b a r r a s s m e n t and f e e l i n g s Many o f  of  the  s t u d y t o l d o f how h a v i n g one  stigmatization.  how t h i s  tied  Lynam's  new r e l a t i o n s h i p s  their  present  these chronic i l l n e s s e s  Several of  young a d u l t s  self-  stigmatizing  embarrassment which i s  embarrassment of  young a d u l t s  and  from  others study  feel  decisions  Occasionally stigma  of  the  b l a m e by  others  for having t h e i r  contributing esteem.  ingredient  Despite  stigmatization, participants include adults  it  illness  a lowering of  some o f  s t a t e m e n t s made r e l a t e d t o  the  with t h i s  a sub-theme  on i t s  notion,  to  p r o b l e m s r e s u l t i n g from t h e  effects  of  some o f  them.  Crohn's disease or c o l i t i s  stigmatization  C r o h n ' s d i s e a s e and c o l i t i s  such as c a n c e r ,  needed t o  establish  the  the  the  young  self-  as  inquiry  often  because  the  are not  as t h o s e r e l a t e d t o h a v i n g c a n c e r .  is  by  stigmatizing  participants in this  effects  research  of  were r e p o r t e d by  illnesses,  noticeable  self-  to  reduced  possible  with other of  given  own. A l t h o u g h a l l  esteem,  not mention experiencing  their  be a b l e  r e p o r t e d b e i n g concerned about t h e i r  Perhaps the  noted  concept  t h e r e were n o t enough a c c o u n t s  connected  as  to  w h i c h was a n o t h e r  feel  did  those  physical readily  Clearly,  conditions  t h o s e w i t h C r o h n ' s d i s e a s e and c o l i t i s  as  as  only  more  under which  more o r  less  stigmatized. The y o u n g a d u l t s experienced they  in this  overwhelming change,  saw t h e m s e l v e s a s p e o p l e .  talked  a b o u t how t h e y  being  isolated  consequences  of  when d i s c u s s i n g adults they  lonely  the  i n c l u d i n g change the  i n how  participants  " e s c a p i s t s and a v o i d e r s " .  and i s o l a t e d .  c a n be s e e n t o  feeling  investigation  Some o f  had become  T h e y saw t h e m s e l v e s a s of  current  This  be r e l a t e d t o  stigmatized.  t r i e d hard to prevent having people  have C r o h n ' s d i s e a s e or c o l i t i s  some o f  As mentioned  self-esteem category,  experience  some o f  earlier, the  discover  because  they  the  young  that  feel  it  is  inevitable  that  it  uneasy r e a c t i o n s for  will  make o t h e r s  feel  uneasy.  then b r i n g about f e e l i n g s  t h e p a r t i c i p a n t s . Lynam's  (1990)  because  of the  stigmatization  research suggests  many y o u n g a d u l t s w i t h c a n c e r e x p e r i e n c e isolation  of  feelings  i n a b i l i t y of people  young a d u l t s  isolated  i n the present  and a p p e a r s t o  stigmatization  of  of  study i n v o l v e d  be r e l a t e d t o  that  in their  t o p r o v i d e s u p p o r t c o m f o r t a b l y . The s i t u a t i o n s the  These  lives  some  of  feeling  experience  of  involved i n people r e a c t i n g i n uncomfortable  ways t o w a r d s t h e m . The p a r t i c i p a n t s i n t h i s illness their  led to  lives.  crises, for  has  change.  (1975),  critical  in researching adult  e v e n t s as  study.  life-changes  forming a f o c a l  that  of  change and a d j u s t m e n t c a n be s e e n t o  and l o s s .  Brammer  c a n be e x p e r i e n c e d a s  loss,  and l o s s p r e c i p i t a t e s  feelings  the present  in  the  (1991)  of g r i e f .  The y o u n g a d u l t s  and g r i e f o v e r t h e  i n c u r r e d by many o f t h e s e c h a n g e s . causes f e e l i n g s  of g r i e f .  change  is disrupted,  study experienced both a great d e a l of  many d i m e n s i o n s o f t h e i r l i v e s  be  analysis,  states that  as r e g u l a r l i f e  The e x p e r i e n c e  Adjusting to the  of  as unwanted.  a n o t h e r o f t h e p r i m a r y themes i n t h i s  grief  colitis  The p a r t i c i p a n t s s h a r e d t h e i r e x p e r i e n c e s  The theme o f related to  point  f o r t h e young a d u l t s  c h a n g e a n d d e s c r i b e d many o f t h e s e c h a n g e s  of  life  Being diagnosed with Crohn's disease or  has c r e a t e d major present  e x t r e m e c h a n g e s t h a t b u r d e n many a r e a s  Riegal  spoke of  i n q u i r y t a l k e d a b o u t how t h e i r  loss  of  change loss of  loss  past  in in  capacity  to  fulfill  physical  abilities,  assistance. change  one's  life,  takes time,  The d i f f i c u l t  and l o s s  psychological  or the  caused  tasks  by an i l l n e s s  be t h e  more d i f f i c u l t  situations  of  participants  deal  of  When t h e diagnosed to  change,  young a d u l t s  body i m a g e ,  apparent  case of  involves  feelings  of  that  participants  the  loss  present  current  understandable. familiar  Brammer  (1991)  an a d d i t i o n a l adjusting  to  i n the  -  loss.  and i s  unknown and  something  adaptational  crises  illnesses,  The y o u n g a d u l t s as  inquiry  in this to  response to  and l o s s  Illness  study  a  intense the  changes  experienced  this grieving  to  is  causes  In c o n s i d e r i n g  response  in  is  g i v i n g up  the  scary. investigation  adjustment  some form o f  burden i n one's l i f e . a situation  forced  body a n d  ladened with  present  were  and were c o m p e l l e d  w h i c h t h e y needed  suggests that  involved  t h e y were  between g r i e f  severe  often  The  study  T h e y went t h r o u g h a p r o c e s s o f  f o r the  illness  activities  (Brammer, 1 9 9 1 ) .  with t h e i r  1991).  and  grief.  in this  The r e l a t i o n  in this  that  living  (Brammer,  and  with  tasks  - performance a b i l i t i e s ,  and e n j o y a b l e  make a d a p t a t i o n s .  change  psychological  with Crohn's disease or c o l i t i s  g i v e up many t h i n g s  expert  are both p h y s i c a l  i n the  loss,  specific  for a person d e a l i n g  proving to  a great  of  and p o s s i b l y  i n nature with the  the  loss  may be t h e  is  appraised  to  adjust  an  change  their  to.  automatic that  He p r o p o s e s  is  causing  that  sensible thing  to  do  when i t  is  futile  circumstance  aspect of  chronic  (1982),  that  change  calls  course  and a d j u s t m e n t  as  this  a sub-theme, behave  experiences.  Additional  environments  of  Ben-Sira  the  study of  situations  investigations  go t h r o u g h  change  the  take.  way  exist  the  some o f  little  present  the  in  the  in  their  c o n t r o l over the  to  relationship colitis person  potential  life.  findings  study  was  to  chronically i l l  young a d u l t s '  in this  change  w o u l d be u s e f u l  c o n t r o l over t h e i r  i n the  lives.  Although there  to  and  (Ben-Sira,  in relationships  adjustment  theme o f  The y o u n g a d u l t s feeling  how a  experienced  their  appeared to  found t h a t  a person of  d e p r i v a t i o n of  are to  insurmountable  present  change  in social  (1982)  the  He e m p h a s i z e s  t h o s e w i t h C r o h n ' s d i s e a s e and  theme e s t a b l i s h e d  lives  He s t a t e s  c o p e w i t h new demands w h i c h h a v e t h e  stripping  lives.  i n the  with others  participants  to  life.  f o r t h e s e young a d u l t s .  explore  important  f o r a p e r s o n t o make m o d i f i c a t i o n s  enough m e n t i o n o f it  of  stress,  by f a r t r a n s c e n d s  c h a n g e s i n numerous a r e a s  Relationships  has  an e s p e c i a l l y  w h i c h may be p e r c e i v e d  overwhelming  more f u l l y  is  a chronic illness  a reasonable  illness  changed  i n examining c h r o n i c i l l n e s s ,  1982) . T h e p a r t i c i p a n t s  include  the  l i v i n g with a chronic i l l n e s s .  adaptations  not  against  1991).  found t h a t  undoubtedly, bounds o f  struggle  (Brammer,  Ben-Sira and c o p i n g ,  to  A powerful  concerned  the  c o n t r o l over  live  of  much o f  path t h e i r  their  their situations  A s t r o n g p r i m a r y theme f o u n d i n t h i s the  constantly  occurrence concept,  of  accompanying t h r e a t further episodes.  that  is  strongly  unpredictability, (1982),  established  disease's  that  prognosis,  p a r t i c u l a r l y , the  accompanying danger of episodes i s chronic  the  unforeseen  Uncertainty,  i n a b i l i t y to  According to  Mishel  lacking  information. Mishel  illness  experience,  respect  to  the  treatment  about the  and t h e  u n p r e d i c t a b i l i t y as  the  method o f  the  will  of  or  in  the  complexity  regarding  the  the  in  information  illness,  disease  and f o r how  of  the  fear  and  and  long  investigation  and a n x i e t y  concerned the  aspects of  the  hospital.  c a n be s e e n t o  uncertainty  by  ambiguity  C r o h n ' s d i s e a s e and c o l i t i s ,  of  outcomes.  four forms:  aspects of  anxiety  (1976),  generated  lack of  a  occur.  Two s u b - c a t e g o r i e s in this  is  bad  l i v i n g with  suggests that  care,  course  other  unfamiliar,  and s e r i o u s n e s s o f to  of  by M c i n t o s h  predict  illness,  i n c l u d i n g how o f t e n  hospitalization  established  (1981)  Ben-Sira  a chronic  incidence  uncertainty  u n c e r t a i n t y has  s t a t e of  diagnosis  prognosis,  of  as d e f i n e d  accurately  (1984),  of  constantly  e v e n t s c h a r a c t e r i z e d as u n p r e d i c t a b l e ,  the  theme  a p a r t i c u l a r l y important aspect of  illness.  involves  the  mentioned  uncertainty.  uncertainty  involved  unpredictable  to t h i s  notion of the  the  A frequently  related  was t h e  of  research  and t h e  These s u b - c a t e g o r i e s  be r e l a t e d t o  f o u n d i n Theme 1.  the  However,  of  theme unknown unknown fear  overriding  and feeling  Theme 1 d e a l s  specifically the  with the  present  u n p r e d i c t a b i l i t y of  theme d e a l s  specifically  These young a d u l t s  felt  sick  anxious  and a l s o  about these fearful  feel  illnesses.  experience Many o f they  Mishel  with hospital  the  young a d u l t s  had never  the  person. the  one's in  future.  the  unpredictable  investigation  of  the  prior  how  hospital  and  there  study  being  i n the occur.  These  chronically  specific  to  the  i l l  illness, is  at  a r e many u n c e r t a i n t i e s  uncertainties  time.  about the  Therefore, the  accompanying t h r e a t  occurrence of  sub-categories  limited  in  expressed  There are also  constantly  become  involved  C r o h n ' s d i s e a s e and c o l i t i s  o n e ' s body d u r i n g t h i s  involving  r e a l l y known  i n the present  impose huge demands on t h e  t i m e when d e v e l o p m e n t a l l y  feeling  uncertainty.  r e a l l y experienced  onset of  began  e v e n t s may i n t e n s i f y  Along with uncertainties  t i m i n g of  anxiety.  participants  found t h a t  were u n c e r t a i n a s t o what was g o i n g t o uncertainties  first  new e x p e r i e n c e s  (1981)  while  and  n o t much i s  In a d d i t i o n ,  when f a c e d w i t h a l l t h e  being h o s p i t a l i z e d .  with fear  s c a r e d when t h e y because  symptoms,  about changes  primary  of  a  theme  the  f u r t h e r e p i s o d e s and t h e  two  f e a r theme w a r r a n t f u r t h e r  i n r e l a t i o n to the  l a r g e r concept  of  uncertainty. The r e s u l t s uncertainty Wiener's  share  (1975)  i n persons  o b t a i n e d i n v o l v i n g u n p r e d i c t a b i l i t y and similarities  s t u d y on t h e  28-3 0 y e a r s  of  burden of  age.  rheumatoid a r t h r i t i s l e a r n ,  to those c o l l e c t e d  rheumatoid a r t h r i t i s  She r e p o r t e d t h a t  over time,  in  that  its  people  with  flare-ups  and s p e c i f i c the  manifestations  burden of  uncertainty  total  about  absence  it  occur. the  will  last;  and  Under t h i s  critical  (2)  the  (4)  It  as:  (1)  whether  area of  there  involvement;  how f r e q u e n t l y  is  psychological,  (3)  obtained  study also  present  accompanying t h r e a t s  how  will one  of to  results  included the  theme  of u n p r e d i c t a b l e  of  occurrences  symptoms. Wiener  (1975)  also  performance  skills  may o c c u r f o r t h o s e w i t h a r t h r i t i s ,  attributable A weakening below t h e  to  found t h a t  factors  that  and t h e n w a s t i n g  affected  joint,  participants  i n the  performance a b i l i t i e s , The p r e s e n t  easier  times.  Their  studies  illnesses,  strength. and  strength.  Having  of  for  losses  of  strength. indications  c a n prompt r e m i n i s c e n c e  and l e a d t o  identified  body  including loss  research provides clear  of peoples'  of  a variety  study,  and b o d i l y  (1979),  of  of  o f m u s c l e may o c c u r a b o v e  caused  These f i n d i n g s  Cohen a n d L a z a r u s  included loss  present  having a chronic i l l n e s s f o r m e r good t i m e s  a reduction  causing a loss  Crohn's disease or c o l i t i s the  be  involving having  o r even e v e r y h o u r . T h e  of  will  flare-ups  monitor p a i n every day,  constantly  is  c o n d i t i o n of v a r i a b l e u n c e r t a i n t y ,  affects  i n the  imposes  of p r e d i c t a b i l i t y . There  such t h i n g s  any p a i n o r s w e l l i n g ; long  are u n p r e d i c t a b l e .  grief  over the  illustrate  of  these  t h o s e r e p o r t e d by  with  coping behaviours.  how  about  loss  and Weisman and Worden experiences  of  (1976).  serious  These s t u d i e s  found  typical  coping s t r a t e g i e s to  former good  they  In g e n e r a l ,  this  sample o f  experienced  loss  over not  activities  colitis.  In l i g h t  chronic  illnesses,  notion that that  cystic or  fibrosis,  Difficulty  the  study  leukemia,  experienced  The themes o f  is  feeling  present  i n the  Haase,  an i l l n e s s .  Also,  experiences  of  is  that  a common r e s p o n s e  i l l n e s s e s was  anger,  a prevalent i n the  failure,  physical effect  ability.  they  P h y s i c a l changes,  actual disease deal  of  anger,  have  investigation, over the  (Haase,  1987).  involved in she  found  outcomes o f  and,  as  of  control having  that  the  various  uncertainty  discussed  c a n be f o u n d w i t h i n t h e p r i m a r y theme o f  of  another  a lack of  The c o n c e p t  c u r r e n t study  times,  and l a c k  on  for  at  delineate  and f e e l i n g  theme.  stenosis,  was a p r o m i n e n t theme  t o many s i t u a t i o n s  i n her  illness  adolescents  pulmonary  l o s s of  the  ability.  chronically i l l  current study,  uncertainty  also present  above,  a great  chronic  in physical  fistula,  life  c a u s e d more c o n c e r n t h a n t h e  of  of  or  other  are c o n s i s t e n t with  chronic renal  extreme  i n her study.  do more  r e s e a r c h on  w i t h p h y s i c a l c h a n g e s and t h e  participants  finding  Crohn's disease  showed t h a t  l i v i n g and q u a l i t y o f  control,  developing  loss  recto-vaginal  that  to  these findings  a noticeable  reported  being able  of phenomenological  with either  scoliosis  daily  is  (1987)  diagnosed  since  young a d u l t s  an i m p o r t a n t c h a r a c t e r i s t i c  their  Haase's  about  times.  physical-type  is  include reminiscences  unpredictability of  the  and w i t h i n two o f t h e  f e a r and a n x i e t y  The p r e s e n t of  sub-categories  theme.  s t u d y f o u n d a marked i n c r e a s e  f e a r o r a n x i e t y o v e r t h e unknown a s p e c t s  illness, of  five  and o f m e d i c a l t e s t s .  changes  Hasse  in physical status,  intrusiveness  of  (1987)  disease  o f p r o c e d u r e s were t h r e e  in  feelings  chronic  found t h a t  r e o c c u r r e n c e , and t h e common t h e m e s .  E x p e r i e n c i n g unpleasant but necessary medications  was  a n o t h e r theme f o u n d i n h e r s t u d y .  The p a r t i c i p a n t s i n  present  v i o l a t e d by t h e  study experienced f e e l i n g  were p r e s c r i b e d f o r t h e i r i n the  illnesses.  Thus,  c u r r e n t s t u d y s h a r e some o f t h e  those with leukemia, chronic renal recto-vaginal  fistula,  s t u d i e d by H a s s e  the  drugs  young  failure,  cystic and  involved feeling emotions  the  reviewed.  emerged f r o m  fibrosis,  this  P a r t i c i p a n t s i n the present of  important  anxiety,  the  study  experiences  i n l i v i n g with these chronic i l l n e s s e s  was t h a t  A marked i n c r e a s e  young a d u l t s  of  s p e c i f i c a l l y c a u s e d by o v e r w h e l m i n g  b r o u g h t a b o u t by h a v i n g t o d e a l w i t h t h e i r  were themes  of  findings that concur with previous  one o f t h e t y p e s  unknown a s p e c t s  adults  scoliosis  i n v e s t i g a t i o n t h a t were n o t c l e a r l y i l l u s t r a t e d i n  showed t h a t  that  same e x p e r i e n c e s  pulmonary s t e n o s i s ,  two n o t a b l e s u b - t h e m e s  literature  the  (1987).  In a d d i t i o n to research,  fear  of  in feelings  of  f e a r and a n x i e t y o v e r  chronic i l l n e s s ,  found i n Hasse's in this  illness.  study  and o f m e d i c a l (1987),  c u r r e n t study a l s o  tests  however,  felt  the  anxiety  the caused  by e x p e r i e n c i n g  overpowering emotions  they  encountered  because of having Crohn's disease or c o l i t i s . of  this  theme i n d i c a t e s  frightened emotions.  and u n s a f e  illnesses,  of  the  dimensions,  i n c l u d e d the  in  was  change illness. less in  of  self  It  in their  an a c t i v e  and y e a r n i n g f o r t h e  a entirely  that  disease or c o l i t i s  strongly  those  noted  is  one  person they  experiences  i n the  i n the  of  present  1966;  being  the  changes  because of  their  It  i n having changes  Crohn's in  element  reviewed,  this  has  theme  study. Crohn's  may h a v e been c a u s e d by e m o t i o n a l  Castelnuovo-Tedesco,  of  While t h i s  research suggests that  disturbances  that  Many r e p o r t e d  cause notable  literature  (Arapakis et Freyberger et  a  their  once were.  involved  self.  changes  experienced  theme i n d i c a t e s  may a c t u a l l y  surfaced  psychological  of  i n many  developing  c h a n g e d human b e i n g  representation  Some p r e v i o u s and c o l i t i s  for  chronic  perceived  by t h e s e p a r t i c i p a n t s .  disease  is  of  participator in life  experienced  clearly  and a d j u s t m e n t  since  of t h i s  like  not  helpful  health  t h e s e young a d u l t s  "personalities"  An e x a m i n a t i o n  persons  strong  of  these  emotional  sub-category  found t h a t  appears p o s s i b l e  some f o r m  necessarily  the  change  feeling  that  that  these  feel  illnesses.  T h e p r i m a r y theme o f  self.  participants  p h y s i c a l symptoms o f  may be c o n d u c i v e t o  with these  the  c a r r y i n g around a l l  although perhaps not  treatment  living  many o f  One may assume t h e n ,  counselling, the  that  An e x a m i n a t i o n  al., al.,  disease  and 1986; 1985).  Although,  three  young a d u l t s  s e v e n made no m e n t i o n o f appeared as lack  of  colitis,  i n the  experiences  of  or not.  other  this  topic  topic  by most  in general,  of  may  The the  suggest  l i v i n g with Crohn's disease  involve  Perhaps,  discounted,  the  current study.  the  question  i l l n e s s e s were c a u s e d by some t y p e  generally  because of  this  of  this  was no l o n g e r  of  or  whether  emotional  idea,  today,  a prominent  being issue  them.  Implications  for  Research  Through t h i s connection  study  with the  life  a whole  host of  experiences  Crohn's disease or c o l i t i s of  study,  cause,  Therefore,  theme i n t h e  present  d i d not h i g h l y  disorder  for  issue.  i m p o r t a n c e p l a c e d upon t h i s  their  their  this  a non-salient  participants that  t a l k e d about  of  themes.  form o f  counselling  with g r i e f  and l o s s ,  feelings  caused  increase  in fear  tests,  affect  information  These  by i l l n e s s , and a n x i e t y  other  over the  domains o f  regarding tests  healthy  issues,  life?  alleviate  to  as:  Many  the  Would some  in  dealing  overwhelming  i n c l u d i n g anger?  s u r r o u n d i n g them? What a r e t h e adapting to  related  t h e s e young a d u l t s  self-esteem  with  themselves.  i n c l u d e such q u e s t i o n s  benefit  in  young a d u l t s  have p r e s e n t e d  t h e s e new i n q u i r i e s a r e s p e c i f i c a l l y  general  questions  Does t h e m a r k e d  illness,  hospital,  Would p r o v i d i n g more some o f  positive  Crohn's disease or c o l i t i s ?  the  changes What a r e  fear  involved  life?  Could the  in  some  ways f o r a young a d u l t w i t h a c h r o n i c i l l n e s s  g a i n more c o n t r o l o v e r t h e i r  and  experience  to of  persons to  questions  related the  w i t h an i l l n e s s  be made l e s s v i o l a t i n g ?  specifically  arenas  nature of  for  r e l a t e d to the  i n key r e l a t i o n s h i p s  Crohn's disease or c o l i t i s . friendships has  speculations  world of  questions  colitis  tend to  change?  Are there  attract  persons  certain  fields  persons  w i t h an i l l n e s s ?  attempt  to  colitis  experience  illnesses? impact of  themes,  exploration  of  persons  of  with  how m i g h t  be t r a n s f o r m e d when  that  concerning the  work o r s c h o o l .  question.  addition  one  illness?  Another group of include  F o r example,  or family r e l a t i o n s h i p s  a chronic  general  inquiry could involve the  change  In  arise  from t h i s  nature of  or i n v o l v e ,  a process  p a r t i c u l a r k i n d s o f work t h a t  who h a v e a c h r o n i c i l l n e s s ? employment t h a t This  in their results  In every  in  study,  sphere  as  tend  career to  Are there of  a preliminary  raises  applicable to of  of  with Crohn's disease  lives,  life,  the  or  a r e more s u p p o r t i v e  u n d e r s t a n d what p e o p l e  Are the  changes  Does h a v i n g C r o h n ' s d i s e a s e  precipitate,  of  study  another  other  questions  having Crohn's disease or c o l i t i s  or  pertinent  chronic addressing  the  c o u l d be  explored. Implications  for Counselling  W i t h 2 , 0 0 0 new c a s e s o f being diagnosed  each y e a r ,  w i t h i n the  counselling  attempting  to  results  the  of  C r o h n ' s d i s e a s e and  it  field will  l i v e w i t h one o f present  is  colitis  quite probable that come a c r o s s  an  persons  individual  these chronic i l l n e s s e s .  study suggest t h a t  there  are  The  several  common themes among t h e  experiences  with Crohn's disease or c o l i t i s . this  c u r r e n t study provides  experiences  of  that  has  an u n d e r s t a n d i n g o f  One o f for  help  of the  these  data  awareness o f  a marked i n c r e a s e  issues.  the  present  in  how a  in supporting a  Crohn's disease or c o l i t i s . the  i l l n e s s e s may h e l p t h e  i n the  of  data  anxiety  study.  d e a l i n g with these emotional  accurately  which  person  indicates  a  Along with experiencing  in feelings  theme f o u n d i n t h e  from  illnesses.  themes p r e s e n t  around g r i e f  perceive  living  l i v i n g with these chronic i l l n e s s e s ,  c o u l d be more e f f e c t i v e  one  young a d u l t s  The q u a l i t a t i v e  t u r n c o u l d p r o v i d e an i n c r e a s e d counsellor  of  was  another  need grief,  common  C o u n s e l l i n g may h e l p  reactions  involved  in  in  having  C o u n s e l l o r s who u n d e r s t a n d and  experiences  of  l i v i n g with  individual in dealing with  these these  feelings. Counselling,  i n v o l v i n g the  disease or c o l i t i s improved i f major  it  is  (ie.  grief,  i n many a r e a s  including  s u c h domains as t h e  at  a n d / o r work,  activities. anxiety,  the  the  p h y s i c a l demands o f  strains  illnesses  i m p o s e d by t h e i r  Crohn's may be  will  an i n d i v i d u a l ' s  l o s s of  performance  have  life,  abilities  enjoyable  i n d i v i d u a l deals with  and a n g e r  d i s e a s e or c o l i t i s ,  and a n g e r ) ,  these of  aspects of  and p a r t i c i p a t i o n i n  The more t h e  grief,  anxiety,  recognized that  implications  school  emotional  their  s t i r r e d up by h a v i n g C r o h n ' s  better their  they  may be a b l e  illness  illness.  and t h e  On t h e  other  to  deal  with  additional hand,  failure  to  d e a l with the  emotional responses to  disease or c o l i t i s  may d e c r e a s e  Crohn's  individual's ability  deal with the  demands o f  l i k e l i h o o d of  severe ongoing emotional d i s t r e s s  losses  illness,  thus  past  i n the present  performance a b i l i t i e s  study  lost  became  activities be  over  of  the  inevitable.  p a r t i c i p a n t s i n the  the  the  and p o t e n t i a l  to help the  individual  colitis  achieve  strengths,  deal  of  study  satisfactory  counsellors  of  on  appeared  may do much  l i v i n g with Crohn's disease  a balanced acceptance  as  limited.  restrictions  present  By e m p h a s i z i n g a r e a s  functioning  a great  severely  A l o n g w i t h l o s s of performance a b i l i t i e s ,  to  increasing  to  experienced.  Participants their  their  the  having  their  or  strengths  and  limitations. Helping they  can d e a l with the  crucial  distress.  their  What i s  another  illness and  known b u t  Openly acknowledging f e e l i n g s  important process  disease or c o l i t i s i n the  to  present  study  of  the  involved feeling  on  the  not  Crohn's  common  or  Some i n d i v i d u a l s need a c h a n c e t o  i n a h e a l t h y way i n o r d e r t o b e t t e r their  illness.  a great  emotions  of having to deal with Crohn's disease  colitis.  of  is  of  a result  management  may p l a y a  deal  anger as  anger  that  a n g e r may be  f o r young a d u l t s w i t h  go t h r o u g h . One o f  so  long-lasting  openly acknowledged  l e s s ominous t h a n t h a t w h i c h i s  discussed.  found  demands o f  p a r t i n m i n i m i z i n g more s e r i o u s  emotional whole  i n d i v i d u a l s deal with t h e i r anxieties  express  their  deal with  the  C o u n s e l l o r s who c o n t i n u e  to  approach the  individual  them d e a l w i t h t h e i r appropriate  w i t h empathy may be a b l e  a n g e r and o t h e r  these  education, illnesses,  theme  s t r o n g emotions  limitations  when c o u n s e l l i n g specific  i n an  great  young a d u l t s  understanding of  may n e e d t o  d e a l of  go t h r o u g h . A d j u s t m e n t s t o f o r the  p u t upon c a r e e r  a p e r s o n w i t h one  attention  s u p p o r t i n g them t h r o u g h t h e likely  help  way.  G i v e n t h e wide range o f and/or  to  in this  study.  t h e many a d j u s t m e n t s  they  those with  must make,  the p o t e n t i a l  better  intervention during these  to will  was a common  W i t h an  disease or c o l i t i s therapeutic  be p a i d  changes  transitions  of  increased Crohn's  for providing transitions  increases. The d i a g n o s i s  of  Crohn's disease or  p r e c i p i t a t e d many c h a n g e s i n the  present  potential results  study.  affects  current study,  do much t o m i n i m i z e t h e individual  constantly their to  i n the  adapt to  control.  keep  changes  the  participants  situations  the  the  a r e i n e v i t a b l y p r o d u c e d , may effects  and a i d  w i t h an i l l n e s s .  that  seen as  they  felt  the  The having  were  day-to-day struggle  illness.  lives  as t h e y  to  out  of  b a l a n c e and c o n t r o l w i t h i n a l l  meaning t o t h e i r  chronic  of  according to  s t u d y were  They h a v e t h e  and g i v e  manage t h e i r  life  present  some s e n s e o f  that,  destructive  i n adapting to  participants  lives  The c o u n s e l l o r who r e c o g n i z e s  for negative  in this  i n the  colitis  of  trying the  attempt  to  It i n the  appeared to present  be q u i t e  study to  areas of  m i g h t do i s  i n the  control.  young a d u l t ' s  is  Client  lives.  a feeling  can h e l p the  counselling  of  c o n t r o l over the  treated  as  in  areas  they  are not  often  therapeutic  people  seeking  responsible It  and d o e s n o t  their  experiences  a  to  is  is  the  style a  sense  lives.  regarded  as  therapy  assistance  w i t h t h e power t o  assumed t h a t  need t o  and t h e i r  of  their  h a v e more o f  psychological  clients  a more  a useful  are  direct  person can  be  be c o n t r o l l e d by o t h e r s  who  are  situation. group t h e r a p y  i n d i v i d u a l s with Crohn's disease or c o l i t i s .  affected  where  person a sense  Client-centred  C o u n s e l l o r s may a l s o c o n s i d e r  feelings  sense  with  allowed w i t h i n  process  adaption.  a s u p e r i o r and e x p e r t  their  the  illnesses,  allow the  for allowing a client  own l i v e s .  a  young a d u l t  dealing with these  processes of  that  trusted  can have  around the  C e n t r e d T h e r a p y a t t e n d s t o what  implies  their  focus  a  confirming  C e n t r e d T h e r a p y c a n be s e e n a s  of  intrinsic  c a s e what  m i g h t h e l p by w o r k i n g w i t h them u s i n g  Client  Client  having  where t h e y  C e n t r e d a p p r o a c h so as t o  control,  control with  possible.  F o r young a d u l t s counsellors  adults  Perhaps i n t h i s  life  The c o u n s e l l o r  control  young  p r o v i d e some f o r m o f  Crohn's d i s e a s e or c o l i t i s sense of  for the  have a sense o f  Crohn's disease or c o l i t i s . counsellor  difficult  and c o n c e r n s  a b o u t how t h e i r  l i v e s with others  c o u l d p r o v i d e needed  Discussing illness  who may h a v e support.  for  has  common  The c o u n s e l l o r  may  be h e l p f u l  in this  r e s p e c t by a s s i s t i n g t h e  Crohn's d i s e a s e or c o l i t i s be d e a l i n g  w i t h one  of  i n f i n d i n g people  these chronic  The e v i d e n c e a c c u m u l a t e d demonstrates  that  feelings  be a c o n s e q u e n c e o f with these various  feelings,  abilities  activities,  a great  resulting  of  that  may  with  also  illnesses.  i n the  present  study  grief,  anxiety,  and a n g e r  can  having Crohn's disease or c o l i t i s .  performance  d e p r i v a t i o n of  young a d u l t  experiences of  and p a r t i c i p a t i o n i n  deal  of  c o n t r o l over  change one's  loss  enjoyable  all  from h a v i n g C r o h n ' s d i s e a s e or  as  colitis. an i n d i v i d u a l  important p s y c h o l o g i c a l  d e a l i n g w i t h t h e s e many  and a  appeared  C o u n s e l l i n g c o u l d be an i m p o r t a n t a r e a where w o u l d be p r o v i d e d w i t h  regarding  and a d j u s t m e n t , life  Along  support  in  issues.  P e r s o n a l Meaning;  In the hope  of  chronic  beginning  this  study,  illness  was  like,  My i n t e r e s t  as  it  was  being  arose  out  of  C r o h n ' s d i s e a s e and my r o l e  supporting people became  dialogues  transcribing -  as  study  tapes of  the  my own  life  narratives,  sessions,  I g r a d u a l l y became  experienced  - with reading,  and w r i t t e n  by  a  by  experience in  issues. with  As  I  the  with  with constructing  aware o f  the  l i v i n g with  a counsellor  dealing with various  immersed i n t h e  interview  stories  I was m o t i v a t e d  p r o v i d i n g more i l l u m i n a t i o n o f what  young a d u l t s . with  of  how I t o o  have  the lived  o r am l i v i n g t h r o u g h many, that  the  not a l l of  the  experiences  p a r t i c i p a n t s have h a d . These e x p e r i e n c e s  transformed deeper  if  f o r me,  s e n s e o f what  i n my l i f e .  over the  d u r a t i o n of  this  study,  l i v i n g with a chronic i l l n e s s  This transformation is  i n words,  but the  different  awareness  h a s h a d an e f f e c t  reactions  to  the world.  It  difficult  feelings  if  myself  reading  my own l i f e .  The themes r e p e a t e d t h r o u g h o u t t h e  experienced chronic person.  f l o o d e d my t h o u g h t s  meant  communicate new  and my  created a r i c h e r intimacy  with  interviews  w i t h memories  As I e x p l o r e d t h e s e m e m o r i e s ,  an i n c r e a s e d awareness  illness  has  a  the  o v e r and o v e r ,  and w r i t t e n n a r r a t i v e s ,  been  into  surrounding t h i s  on how I s e e was a s  to  transcripts,  my own e x p e r i e n c e s .  have  of  I  o f how l i v i n g w i t h a  h a s had a p r o f o u n d i m p a c t on who I am a s  a  References  Alberts,  M . S . , & Lyons, J . S .  style  and i l l n e s s v a r i a b l e s  Psychological Alexander,  F.  Reports  (1934).  Quarterly, I.  3,  E.  Arapakis,  56,  colitis.  psychological  disturbances.  factors  Psychoanalytic  Personality,  psychological  & Lyketsos,  syndrome.  Journal  of  265-294. C . G . , Gerolymatos, G . C . (1986).  intro-punitiveness bowel  coping  501-539.  G . , Lyketsos,  S.C.,  of  and p s y c h o b i o g r a p h y .  Personality.  of  71-79.  The i n f l u e n c e  (1988).  assessment,  Relations  in ulcerative  62,  f  upon g a s t r o i n t e s t i n a l  Alexander,  (1988).  Low d o m i n a n c e  in ulcerative  Psychotherapy  K . , Richardson,  colitis  and  and h i g h irritable  and P s y c h o s o m a t i c s ,  46,  171-176. Armstrong,  D.  (1990).  exploration Science Asakura,  of  Use o f  the  genealogical  chronic illness:  and M e d i c i n e .  30,  A research  S.,  K . , Hire,  Sekiguchi,  S.  lymphocyte  and a n t i g e n s w i t h J a p a n e s e  Astin,  A. A.  K . , Ando,  The c o l l e g e  DC: A m e r i c a n C o u n c i l  K . , Takata,  Association  Gastroenterology. (1968).  the  Social  Watanabe, M . ,  Kobayashi,  colitis.  note.  in  1173-1186.  H . , Tsuchiya, M . , A i s o , ,  (1982).  method  82,  of  the  H., &  human  ulcerative  413-418.  environment.  on E d u c a t i o n .  Washington,  174  Backstrom,  C. H . , & Hursh-Cesar,  New Y o r k : Ben-Sira,  Z.  Social Brammer,  (1982).  Chronic  of  How t o  Bronfenbrenner,  U.  Cambridge,  of  25,  163-175. life  transitions:  of  human  development.  Press. Introduction  to  Scandinavian Journal  Psychiatric observations with u l c e r a t i v e  of  (1979).  G. E . , of  life  of  (1959).  Coping with the  (Ed.),  Health  colitis.  stresses  psychology  Jossey-Bass.  & Forsythe,  C. J .  events during  (1985).  adolescence.  Community P s y c h o l o g y .  13,  677-691.  A method f o r d e t e r m i n i n g t y p e s  Journal  on  781-788.  San F r a n c i s c o :  American Journal  87-94.  R.S.  In G. C . Stone  Characteristics  self-esteem.  (1966).  in a patient  Davis,  S.  (1984).  M e d i c i n e . 28,  217-254).  Coopersmith,  G.  psychological.  P.  F . , & Lazarus, illness.  and c o p i n g .  51-63.  gout  Psychosomatic  B. E . ,  research.  chancre. W a s h i n g t o n :  The e c o l o g y  J . , & Karlson,  Castelnuovo-Tedesco,  Compas,  15,  MA: H a r v a r d U n i v e r s i t y  Psychology.  (pp.  Survey  Corporation.  (1979).  phenomenological  of  stress  cope w i t h  personal  Hemisphere P u b l i s h i n g  Cohen,  illness  S c i e n c e s and M e d i c i n e ,  The c h a l l e n g e  attacks  (1981).  John Wiley & Sons.  L . M. (1991).  Bullington,,  G.  of  of Abnormal S o c i a l P s y c h o l o g y ,  59,  Daniels,  G . E . , O'Connor,  C.A.,  J . F . , Karush,  & L e p o r e , M. (1962).  Three decades i n  and t r e a t m e n t  of u l c e r a t i v e  Medicine,  85-93.  Davis,  M. Z .  care. Druss,  24/  (1972)  R. G . , O ' C o n n o r ,  in  body image  Quarterly. Erikson,  E . H.  41,  colitis.  Socioemotional  American Journal  of  A . , Moses,  following  N u r s i n g , 72.,  ileostomy.  observation  Psychosomatic  component  J . F . , & Stern,  L . , Flood,  of  coronary  705-709.  L . O . (1972).  Changes  Psychoanalytic  195-206.  (1963).  C h i l d h o o d and s o c i e t y .  New Y o r k :  Norton. Esler,  M . D . , & Goulston, J .  colonic  disorders.  (1973).  Levels of  New E n g l a n d J o u r n a l  anxiety  of  in  Medicine,  73,  73-76. Felton,  B . J . , Revenson,  Stress  and c o p i n g  adjustment  T . A . , & H i n r i c h s e n , G . A . (1987) i n the  explanation  K . , & Fogel,  F.  (1973).  children with ulcerative 73,  21,  Journal  240-253.  Psychological  colitis.  of  Child  correlates  in  Development,  515-516.  Freyberger,  H . , K u n s e b e c k , H . , Lempa,  Avenarius, in  psychological  among c h r o n i c a l l y i l l a d u l t s .  H e a l t h and S o c i a l B e h a v i o u r . Fishier,  of  H.  alexthymic  ulcerative  (1985).  Psycho-therapeutic  patients:  colitis  and P s y c h o s o m a t i c s ,  W., Wellmann, W . , &  With s p e c i a l  regard  and C r o h n p a t i e n t s . 44.,  72-81.  interventions to  Psychotherapy  Geist,  R. A .  (1979).  Onset of  and a d o l e s c e n t s : intervention.  chronic illness  Psychotherapeutic  American J o u r n a l  of  and  in children consultative  Orthopsychiatry,  49,  4-23. Gerhardt,  U.  (1990).  failure. Gorden,  R.  (1980).  Homewood,  Francisco:  evaluation. Joan E .  Ihde,  The D o r s e y  (1981).  Y.  (1989).  Newbury P a r k ,  (1987).  chronically 9,  strategy,  30,  renal  1121-1224.  techniques  and  Press.  Effective  evaluation.  San  Jossey-Bass.  E . , & Lincoln,  Haase,  II:  Y.  i n end-stage  and M e d i c i n e ,  Interviewing  E . , & Lincoln,  Guba,  careers  S o c i a l Science  tactics. Guba,  Patient  Fourth  generation  CA: Sage  Publications.  The l i v e d e x p e r i e n c e  i l l adolescents.  of  courage  Advanced N u r s i n g  in  Science.  64-80.  D.  (1977).  E x p e r i m e n t a l phenomenology:  introduction. Jenkins,  C. D . , Hurst,  changes:  I.  36,  G. P.  Putnam's  M. W . , & Rose,  Do p e o p l e  Psychiatry, Kalnins,  New Y o r k :  M. P . ,  & Terry,  stresses  Journal  P e d i a t r i c Psychology,  G.  (1993).  in families  Psychological  a phenomenological Almquirst  R. M . ( 1 9 7 9 ) .  Life  379-384.  Concurrent  Karlsson,  Sons.  r e a l l y remember? A r c h i v e s o f G e n e r a l  V . , Churchill,  of  An  (1980).  with a leukemic 5,  Stockholm,  International.  child.  81-92.  qualitative  perspective.  and W i k s e l l  G. E .  research Sweden:  from  Karush,  A . , & Daniels,  psychoanalyses 15. Labov,  140  W.  University  N.  of  (1986).  and P e d a g o g y .  on phenomenology  4,  New Y o r k :  Examining support i n c o n t e x t :  H e a l t h and I l l n e s s .  (1972).  childhood: Pediatrics. Mcintosh,  J.  (1976).  cancer p a t i e n t ' s  Processes  of  adaption.  communication,  Science  and M e d i c i n e . 8,  A . I . , Monk, Illness  in  801-881.  and c o n t r o l a s s o c i a t e d  (1970).  167-194.  to psychosocial  seeking  Mendeloff,  12,  A  perspective.  Long-term p h y s i c a l i l l n e s s  A challenge 50,  psychopathology  Spectrum.  Sociology A.  trustworthiness.  Models f o r c l i n i c a l  from t h e  Mattsson,  5-7.  18-25.  redefinition of  1,  and  The s t r e s s and c o p i n g p a r a d i g m . I n C .  (Ed.),  (1990).  Philadelphia:  Press.  T r i a n g u l a t i o n and d a t a  177-214).  M. J .  inner c i t y .  Reflections  (1981).  Eisdorfer  Lynam,  The  Psychosomatic M e d i c i n e .  Phenomenology and P e d a g o g y .  R.S.  (pp.  two c a s e s .  Pennsylvania  Phenomenology Lazarus,  Ulcerative c o l i t i s :  Language i n t h e  M. (1983).  pedagogy. Lather,  (1953).  167.  (1972).  Langeveld,  of  G.  with cancer.  information Social  167-187.  M . , Siegal,  experience  C.I.  r  and l i f e  patients  with  colitis.  New E n g l a n d J o u r n a l  & Lilienfeld, stresses  i r r i t a b l e c o l o n and w i t h  A.  in  ulcerative  o f M e d i c i n e . 282.  14-17.  Merleau-Ponty,  M. ( 1 9 5 6 ) .  What i s  phenomenology?  In M.  of e x i s t e n t i a l i s m :  A  Friedman  (Ed.),  The w o r l d s  critical  reader  (pp. 7 9 - 8 3 ) .  Chicago Mishel,  Press.  M. H . (1981).  illness. Mishel,  The measurement  Nursing Research.  M. H . (1984).  illness. Monk,  A . I . , Siegel,  enteritis  Gastroenterology. R. H . ( i 9 8 7 ) .  and s t r e s s 7,  in  163-171.  C . I . , & L i l i e n f e l d , A.  of u l c e r a t i v e  among a d u l t s 56,  in  258-263.  i n Nursing i n Health,  An e p i d e m i o l o g i c a l  regional  Murphy,  30.  of uncertainty  Perceived uncertainty  Research  M . , Mendeloff, (1969).  C h i c a g o : The U n i v e r s i t y o f  colitis  and  in Baltimore.  847-857.  T h e body s i l e n t .  London:  Phoenix  House-Dent. Natanson,  M. (1970).  philosophy  The j o u r n e y i n g s e l f :  and s o c i a l  role.  A study  in  C a m b r i d g e , MA: A d d i s o n  Wesley. Newcomb,  T . M. (1964).  Sanford York: Norbeck,  (Ed.),  Nover,  College  peer  group i n f l u e n c e .  and c h a r a c t e r  In H .  (pp. 141-145).  New  Wiley.  J . S.  research 3,  Student  (1981).  Social  support:  and a p p l i c a t i o n s .  A model  Advances  for c l i n i c a l  in nursing  science.  43-59. R. A .  (1973).  P a i n and t h e b u r n e d c h i l d .  American Academic C h i l d P s y c h i a t r y .  12.,  Journal  499-505.  of  Oakley,  Ann ( 1 9 8 1 ) .  terms. H.),  L.,  women: A c o n t r a d i c t i o n  In Doing Feminist Research  pp.  O'Connor,  Interviewing  30-61.  Routledge  J . F . , Daniels, & Stern,  L . O.  effectiveness ulcerative  of  & Kegan P a u l ,  G . , Flood,  (1964).  Annual  C . , Karush,  i n the  Roberts  Boston.  An e v a l u a t i o n  psychotherapy  colitis.  ( E d i t e d by  in  of  A . , Moses, the  treatment  Internal Medicine,  of  60,  587-  602. O'Connor, L.  J . F . , Daniels,  O.  (1968).  G . , Karush,  Prognostic  diagnosis  in ulcerative  Medicine,  28,  Orlich,  D. C .  R. P .  (1978).  (1979).  Medical Pless,  I.  colitis.  Designing  psychiatric  Psychosomatic  sensible  surveys.  C h r o n i c p a i n p r i m e r . C h i c a g o : Y e a r Book Inc.  & P i n k e r t o n , P.  disorder:  of  NY: R e d g r a v e P u b l i s h i n g Company.  Publishers,  B.,  implications  C . , & Stern  375-381.  Pleasantville, Pawl,  A . , Flood,  (1975).  Promoting patterns  of  Chronic  childhood  adjustment.  London:  Henry Kimpton P u b l i s h e r s . Polkinghorne, Albany, Psathas,  G.  D.  (1983).  Rafoth,  human s c i e n c e s .  NY: S t a t e U n i v e r s i t y o f New Y o r k (1973).  Introduction.  Phenomenological (pp.  Methodology f o r the  1-21).  sociology:  New Y o r k :  B. A . , & Rubin,  construction  In G. Psathas I s s u e s and  (Ed.),  applications  Wiley.  D. L .  of w r i t t e n  Ablex Publishing  Press.  (1988).  The  social  communication.  Corporation.  Norwood, N J :  180  Ray,  C . , Lindop, coping.  Reason, of  P.,  J . , & Gibson,  Psychological & Rowan,  J.  P.  (1980).  (1982).  Medicine.  (1981).  new p a r a d i g m r e s e a r c h .  Ricoeur,  S.  12.,  The mechanisms 385-395.  Human i n q u i r y : A New Y o r k :  Narrative time.  of  sourcebook  John W i l e y .  Critical  Inquiry,  7,  169-190. Riegal,  K. F.  (1975).  interpretation Ginsberg  Adult l i f e  of  (Eds.),  Normative L i f e  crises:  development. Life  A  dialectic  In H . Datan & L . H .  Span D e v e l o p m e n t a l  Crises  (pp.  99-127).  Psychology:  New Y o r k :  Academic  Press. Sandelowski,  M. (1986).  research. Scambler,  terms  8,  26-43.  with  F. C.  the  (Eds.),  i n Nursing Research,  8,  27-37.  (1979).  Adaption to  New Y o r k :  of  Free  chronic  C. Green,  Clinical Plenum  H e a l t h and  Qualitative  Coming Illness,  sociology: A  Press. illness  & R.  and  Meagher  Health Psychology  (pp.  Press.  Psychoanalytic  in children.  Being e p i l e p t i c :  New Y o r k :  In T . M i l l o n ,  M. (1946).  colitis  (1986). Sociology  J.  Handbook o f  153-172).  329.  qualitative  madness.  (1982).  disability.  Sperling,  in  stigma.  H . , & Jacobs,  method t o Shontz,  rigor  G . , & Hopkins, A.  to  Schwartz,  Advances  The p r o b l e m o f  study  Psychoanalytic  of  ulcerative  Quarterly,  15,  302-  Steinhauer,  P.  D . , Mushin,  Psychological Kimpton Stienhausen,  aspects of  H . , & Kies, colitis  adolescents. Psychiatry,  (1990).  software A.  (1982).  London:  Henry  Comparative s t u d i e s  and C r o h n ' s d i s e a s e of  K.  43.,  (1985).  and  V e r b a l measures  of  Psychotherapy  and  32-37.  Qualitative research:  tools.  (1985).  of  i n c h i l d r e n and  C h i l d Psychology  What do t h e y m e a s u r e .  Psychosomatics,  Tolor,  chronic i l l n e s s .  (1982).  450-455.  G . J . , & Doody,  R.  H.  Journal 41,  alexthymia:  Tesch,  & R a e - G r a n t , Q.  Publishers.  ulcerative  Taylor,  D. N . ,  New Y o r k :  Effective  Analysis types  The F a l m e r  interviewing.  and  Press. Springfield,  II:  C h a r l e s C . Thomas P u b l i s h e r s , v a n Manen,  M. (1984).  writing: of  An i n t r o d u c t i o n .  A . D . , & Worden, J . W . ( 1 9 7 6 ) . cancer:  Significance  International Wiener,  C. L .  Medicine, T. A.  Journal  (1975).  tolerating  Wills,  Monograph #7,  research  and  The U n i v e r s i t y  Alberta.  Weisman, in  "Doing" p h e n o m e n o l o g i c a l  the 9,  the  first  100  days.  Psychiatric Medicine,  The b u r d e n o f  uncertainty.  rheumatoid  Social  plight  7,  1-13.  arthritis:  Science  and  97-104.  (1985).  relationships.  of  of  The e x i s t e n t i a l  Supportive functions I n S.  S u p p o r t and H e a l t h  Cohen,  (pp.  & S.  61-82).  of  interpersonal  L . Syme New Y o r k :  (Eds.),  Social  Academic.  182  Young,  M. N .  (1987).  The N e t h e r l a n d s : Zarit,  S.  H . (1980).  Spectrum.  T a l e w o r l d s and s t o r y r e a l i t i s . Martinus Nijhoff A g i n g and m e n t a l  Dordrecht,  Publishers. disorders.  New Y o r k :  183  i  APPENDICES  APPENDIX A RECRUITMENT NOTICE  RECRUITMENT NOTICE  PARTICIPANT  RECRUITMENT NOTICE FOR YOUNG ADULTS WITH  CROHN'S  DISEASE OR COLITIS  Young a d u l t s of  life  a r e needed  experiences  for a research project  of. young a d u l t s  on t h e  nature  with Crohn's disease  or  colitis.  Participation  involves  two  interviews a  If  you are  further  interested  up t o  one h o u r and  half.  in volunteering  information please  of  a n d / o r would  like  phone:  Glenn Matthes at  879-7790  Department of  Counselling  University  British  of  Psychology  Columbia  S u p e r v i s e d by: D r . R i c h a r d  Young  186  . APPENDIX B Orientation  to  the  Written  Narrative  O r i e n t a t i o n to the Written N a r r a t i v e  The o r i e n t a t i o n t o t h e in  general  a short  up t o  our c o n v e r s a t i o n over the  o r i e n t a t i o n to  participation  in this  (colitis).  study.  This part involves  experiences  This  i n the  story  incidents  i n your  and be u s e d  o n l y have t o w r i t e a r e any q u e s t i o n s narrative please  your  Crohn's story  your  occurred. It  involves  were  life. story w i l l  be  treated  for research purposes  a s much a s y o u f e e l  only.  y o u want t o .  If  o r c o n c e r n s y o u have r e g a r d i n g t h e feel  free  story to  Once a g a i n ,  here  writing a  l i k e a summary o f  t o phone me.  b l a n k paper you can w r i t e your s t o r y completed  phone  l i k e your l i f e  and e v e n t s w h i c h y o u f e e l  i n f o r m a t i o n from t h e  confidentially  is  is  order i n which they  important or c r i t i c a l All  with having  This composition  or autobiography.  describing  described  the w r i t t e n s t o r y p a r t of  c o m p o s i t i o n about your experiences disease  now be  form:  As a f o l l o w is  narrative w i l l  our i n t e r v i e w  in.  Here i s Please  You there  written  a booklet bring  appointment.  thank-you for your p a r t i c i p a t i o n .  your  of  APPENDIX C Introduction to  the  Interview  The i n t r o d u c t i o n a t t h e will  now be d e s c r i b e d  Thank y o u to  before  to  in this  about the  would l i k e  to  research please  in  nature of  feel  free  as p a r t o f  the  C o u n s e l l i n g department am t r y i n g t o  study  for  volunteering  and i t s that  ask them.  requirements  find  interview  you a  bit  purpose,  information  y o u h a v e any q u e s t i o n s  to  is  the  I know I s p o k e t o  this  If  C o u n s e l l i n g Psychology.  I  participant)  study.  clearer.  of  form:  b r i e f l y go o v e r some o f  h e l p make i t  conducted  in general  (name o f  participate  very s t a r t  This  study  I  again  about is  the  being  f o r my m a s t e r s  D r . R i c h a r d Young f r o m  but  degree  the  my s u p e r v i s o r . o u t what  it  is  like  for a person  in  y o u r age  group t o have t o d e a l w i t h C r o h n ' s d i s e a s e  or  colitis.  Because  person's  way o f  dealing with  different you've  been a b l e  y o u r age  to  live  way and I ' d  will  in their  y o u now w i t h o u t  to  use  I can c o n c e n t r a t e  to write  to  quite  know how  The i n f o r m a t i o n  ways o f  adapt t o  I would l i k e t o  having to  like  be  dealing with Crohn's disease  struggle  so t h a t  I would l i k e  one  h e l p me u n d e r s t a n d how p e o p l e  w h i c h i n t u r n may l e a d t o b e t t e r  your story  ways,  with your d i s e a s e .  group experience  With your permission,  that  in different  l i v i n g with a d i s e a s e can o f t e n  interviews  young a d u l t s  tape  live  than another person's  from t h e s e  colitis  we a l l  i n t e r r u p t you t o down.  The t a p e  t r a n s c r i b e d b u t any i n f o r m a t i o n t h a t  their  or  assisting disease.  a tape-recorder on l i s t e n i n g repeat will  to  to  something  be  may i d e n t i f y  in  who y o u  are,  s u c h as y o u r name, w i l l  that  you g i v e  only  f o r research purposes.  me w i l l  n o t be u s e d .  be t r e a t e d c o n f i d e n t i a l l y and be  in  this  interview at  to  take  a look at t h i s  any t i m e .  At t h i s  p e r m i s s i o n form  Please  read i t  any q u e s t i o n s  before  signing i t .  any q u e s t i o n s  or concerns that  (ie.  Crohn's or c o l i t i s ) ]  time (hand  completely  I would l i k e  free  B e f o r e we b e g i n ,  me a b i t  are  addressed?  to  ask  there  (pause)  a b o u t when y o u  [participants specific .  you  to  and f e e l  I haven't  perhaps you c o u l d t e l l  were d i a g n o s e d as h a v i n g  used  You may s t o p y o u r p a r t i c i p a t i o n  participant).  To b e g i n ,  A l l information  disease  APPENDIX CONSENT  D  FORM  UNIVERSITY OF BRITISH COLUMBIA  The  L i f e Experiences of People With a C h r o n i c I l l n e s s : A n a l y s e s o f C r o h n ' s D i s e a s e and C o l i t i s  Consent  Form  I, , c o n s e n t t o my p a r t i c i p a t i o n i n a r e s e a r c h p r o j e c t r e g a r d i n g my e x p e r i e n c e s dealing with a chronic i l l n e s s . This project i s being c o n d u c t e d by G l e n n M a t t h e s ( P h . #. 879-7790) a g r a d u a t e student of the U n i v e r s i t y of B r i t i s h Columbia's C o u n s e l l i n g P s y c h o l o g y p r o g r a m f o r h i s M a s t e r s t h e s i s . He i s b e i n g a d v i s e d by R i c h a r d A . Young E d . D , whom I may c o n t a c t a t 8 2 2 6380. The p u r p o s e o f t h i s s t u d y i s t o examine how p e o p l e make s e n s e o f t h e i n f l u e n c e s C r o h n ' s d i s e a s e o r c o l i t i s has had on t h e i r l i v e s . I n t h i s s t u d y t h e r e s e a r c h e r p l a n s t o i n v e s t i g a t e i n d i v i d u a l s ' p e r c e p t i o n s o f , r e s p o n s e s t o , and management o f t h e l i f e e x p e r i e n c e o f l i v i n g w i t h an i l l n e s s . The v a l u e o f t h i s s t u d y w i l l be i n u n d e r s t a n d i n g my e x p e r i e n c e o f c o p i n g w i t h c h r o n i c i l l n e s s f r o m my own p e r s p e c t i v e . I am aware t h a t my p a r t i c i p a t i o n w i l l i n v o l v e p a r t i c i p a t i n g i n an a u d i o t a p e d i n t e r v i e w . The i n t e r v i e w w i l l l a s t up t o two h o u r s . None o f t h e d a t a i n c l u d i n g t h e a u d i o t a p e w i l l be a v a i l a b l e t o any p e r s o n s o t h e r t h a n t h e r e s e a r c h e r a n d t h e r e s e a r c h e r ' s s u p e r v i s o r . I u n d e r s t a n d t h a t my p a r t i c i p a t i o n i n t h i s r e s e a r c h i s v o l u n t a r y and may be t e r m i n a t e d a t any t i m e . I may r e f u s e t o answer any p a r t i c u l a r q u e s t i o n s . S h o u l d I h a v e any q u e s t i o n s a b o u t t h e p r o c e d u r e s , I may a s k them a t any t i m e .  I  a l s o acknowledge  receipt  of  a copy o f  form.  Date:_  Signed: Address:  Ph.  #:  this  consent  APPENDIX E DEMOGRAPHIC QUESTIONNAIRE  194  The L i f e  E x p e r i e n c e s o f Young A d u l t s W i t h a C h r o n i c I l l n e s s : An A n a l y s e s o f C r o h n ' s D i s e a s e and C o l i t i s Demographic Q u e s t i o n n a i r e Principal Investigator: Glenn Matthes U n i v e r s i t y of B r i t i s h Columbia 879-7790 Note: T h i s f o r m i s t o be c o m p l e t e d by t h e p a r t i c i p a n t i n the presence of the researcher at the beginning of the research procedures. P r o j e c t No. Sex:  Male  Female  Age: What s p e c i f i c  illness  do y o u h a v e ? : C r o h n ' s D i s e a s e Colitis  Y e a r a n d month d i s e a s e was  diagnosed:  Are you r e c e i v i n g  of  illness  at  If  what t y p e  yes,  the  Have y o u e v e r  any t y p e  present of  time?:  treatment  had s u r g e r y  treatment  for  Yes a r e you  your No  receiving?:  f o r your i l l n e s s ? :  Yes No  If  yes,  what t y p e  of  s u r g e r y d i d you have  How w o u l d y o u d e s c r i b e Very 1 2 Good I  your h e a l t h at 3 4  done?:  the  present 5  time?: Very I Bad  I s t h e r e any o t h e r i n f o r m a t i o n y o u f e e l t h e r e s e a r c h e r s h o u l d be aware o f b e f o r e t h e p r o c e d u r e s b e g i n ? I f y e s , please provide i t here:  195  APPENDIX F Sample Interview  Questions  I'm wondering influence  if  on y o u r  What i s  -  Do c e r t a i n p e o p l e  -  (or c o l i t i s )  h a s h a d any  life.  -  it  d e a l i n g with the  the  Crohn's disease  really  l i k e having a chronic i n your l i f e  illness?  play a part i n  your  play a p a r t i n your d e a l i n g  with  disease?  Do c e r t a i n p l a c e s  disease? -  Are there  d e a l i n g with the  any o t h e r  things  that  play a p a r t i n your  disease?  I ' m w o n d e r i n g how y o u have r e s p o n d e d t o -  How h a v e y o u d e a l t  h a v i n g an  l i v i n g with a chronic  What do y o u t h i n k c a u s e s C r o h n ' s d i s e a s e o r When was y o u r c h r o n i c i l l n e s s -  I'm wondering i f  personality -  caused  -  i n any way.  Do y o u t h i n k c o u n s e l l i n g  w o u l d be o f  or  any b e n e f i t  in  disease?  Do y o u t h i n k c o u n s e l l i n g  b o d i l y symptoms  (colitis)?  you t h i n k y o u r e m o t i o n s  d e a l with your  illness?  diagnosed?  your i l l n e s s  h e l p i n g you t o  illness.  would have  any e f f e c t  on  the  of your disease?  I ' m w o n d e r i n g how y o u have a t t e m p t e d  po d e a l w i t h  your  illness. since  developing -  to  Have y o u had t o your  because of  your  I'm wondering i f  activities  because of  i n any way  illness?  D i d y o u h a v e any f u t u r e p l a n s  alter -  change y o u r b e h a v i o u r  that  you f e l t  you had  illness? you have e v e r  your  disease.  had t o  alter  your  197  -  Has y o u r l i f e  changed  i n anyway b e c a u s e o f  your  illness? Have y o u e v e r doctor)  with your  in  help  from o t h e r s  i n d e a l i n g with your  I'm wondering  -  sought  if  (apart  from y o u r  illness?  y o u t h i n k y o u r age  effects  how y o u  deal  disease.  Has h a v i n g a c h r o n i c i l l n e s s  changed y o u r s o c i a l  life  any way? -  body?  Has h a v i n g y o u r i l l n e s s  changed t h e  way y o u v i e w  your  

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