Copyright is owned by the Author of the thesis.  Permission is given for 
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A TABLE OF METAPHORS:  
  
THE VISUAL REPRESENTATION  
OF CHRONIC ILLNESS 
 
 
 
A thesis presented in partial fulfilment of the requirements for the degree 
of 
 
 
 
Masters of Arts 
In 
Social Anthropology 
 
 
 
At Massey University, Albany 
New Zealand 
 
 
 
 
 
Ruth Elizabeth Anne Gibbons 
 
2010 
 
  
 ABSTRACT 
 
 
For people who live with Myalgic Encephalomyelitis / Chronic Fatigue 
Syndrome, Fibromyalgia and Multiple Chemical Sensitivity syndrome 
illness is a hidden construct.  The body does not display the chronicity of 
the internal experience.  This thesis removes the barrier between what is 
experienced and what is visible by creating visual means of 
communicating the body’s hidden experience.  The place of the viewer is 
part of this discussion.  Through visual methods digital photographic 
techniques and the current interest in sensory anthropology the 
embodied sensory chronic illness experience is explored.   The hidden 
experiences were made visual creating “MeBoxes” and masks which 
showed both the external and embodied internal experiences of chronic 
illness. 
 
As the process of working with and walking beside the participants 
developed, I found that the discourse on imaging within the literature was 
inadequate to show the real lived experiences of those with chronic 
illness.   My interactions with the people of this thesis and the process of 
honouring their experiences required a model that would encourage the 
viewer to new and perhaps unrealised depths of participation to 
understand the participant’s multi-faceted and multi-layered experiences.    
Part of the discussion is the ability of images to communicate sensory 
experience as is the case with Munch’s The Scream and Picasso’s 
Guernica.  Through the use of a hypertextual self-scape I show how 
participants created access to their experiences through their visual 
representations and through a collaborative approach became composite 
hypertextual self-scape metaphors. 
 
 
 
 
ACKNOWLEDGEMENTS 
 
 
I would like to begin by thanking my participants for their involvement in 
this unusual process.  Your enthusiasm for the project and your 
willingness to share your experiences has made this thesis possible.   
 
Thank you to the Graduate Research Fund at Massey Albany who made 
it possible for me to do this research through their financial support. 
 
Thank you to the Association of Social Anthropologists New Zealand’s 
Kakano Fund Award for their financial support in printing this thesis. 
 
Thank you to my supervisor Dr. Eleanor Rimoldi who supported my 
unusual research method and encouraged me throughout the process.  
To my second supervisor Dr. Kathryn Rountree who encouraged me to 
polish my thesis and make it shine.  I would also like to thank my 
markers for their supportive comments and encouragement. 
 
Last but not least my family who have supported me throughout the ups 
and downs of the thesis process and especially to my proof reader and 
sanity supervisor, also known as Mum.   
 
CONTENTS 
 
 
 
LIST OF ILLUSTRATIONS 
 
CHAPTER 1 – INTRODUCTION  ……………………………..Pg   1 
TOPIC AND APPROACH              1 
CHAPTER OVERVIEW             2 
PERSONAL INTEREST               5 
RESEARCH FOCUS               6 
 
 
CHAPTER 2  -  WORDS AND VISION ………………………Pg.   7 
WHAT IS CHRONIC ILLNESS?            7 
VISUAL ANTHROPOLOGY            13 
WHY THE VISUAL IN RELATION TO CHRONIC ILLNESS        16 
COMMUNICATING THROUGH THE VISUAL          20 
LOOKING IN: VISUAL IMAGES AND SEEING         22 
IMAGES AND ART             23 
THE POLITICS OF VISION            25 
SUMMARY              27 
 
 
CHAPTER 3  -   METHOD AND PRACTISE   …..…………..Pg.  29 
CARE OF PARTICIPANTS            30 
SUPPORT GROUPS            31 
INTERVIEW SESSION ONE :“MeBOX”          36 
MASKS                40 
INTERVIEW SESSION TWO: PHOTOGRAPHIC METHOD        42 
PHOTOGRAPHIC PRACTICE           43 
THE MISSING              44 
IMAGES OF CHRONIC ILLNESS           45 
SUMMARY               46 
 
 
CHAPTER 4  - OBJECTS, NARRATIVE AND HYPERTEXT.PG. 47 
THE DISADVANTAGE OF MIRRORS            47 
THE HYPERTEXTUAL SELF-SCAPE           48 
“MeBOXES”: HYPERTEXTUAL SELF-SCAPE         53 
MULTIPLE FRAMES OF REFLECTION          60 
SELF-SCAPES OF LOSS            66 
SELF-SCAPES AND EMBODIED EXPERIENCE        71 
SUMMARY               76 
 
 
CHAPTER 5 - MASKS AS REFLEXIVE HYPERTEXTUAL SELF-
SCAPES. …………………………………………..……………Pg. 77 
HYPERTEXTUAL MASKS             77 
ON THE OUTSIDE NOT LOOKING IN – HIDDENNESS        78 
ON THE INSIDE               86 
VIEWING IMAGES             94 
SUMMARY             110 
 
 
 
CHAPTER 6 - THE HYPERTEXTUAL SELF-SCAPE: BEYOND THE 
SURFACE ………………………Pg. 111 
HYPERTEXTUAL SELF-SCAPE: Through the Surface             112 
WHY ART? WHY THE VISUAL.           113 
DIGITAL TECHNOLOGY            115 
DIGITAL IMAGINING            117 
 PARTICIPANT, RESEARCHER, VIEWER = Reflexive process 118 
PART 2 - SENSORY DIALOGUE          122 
COMPOSITE HYPERTEXTUAL SELF-SCAPE METAPHORS   125 
SUMMARY               186 
 
CHAPTER 7  -  CONCLUSION ………………………………..Pg. 189 
WHY THE HYPERTEXTUAL SELF-SCAPE           190 
METHODOLOGICAL ISSUES          191 
COMPOSITE IMAGES            194  
XENOTROPIC MURINE LEUKAEMIA VIRUS-RELATED VIRUS 198 
SENSORY ANTHROPOLOGY            198 
CREATIVITY, MEDICAL ANTHROPOLOGY AND VISUAL 
ANTHROPOLOGY             199 
 
 
 
APPENDICES 
 
TERMINOLOGY  
 
BIBLIOGRAPHY 
 
 
 
 
 
 
LIST OF ILLUSTRATIONS 
 
 
CHAPTER 3  Image 3.1   Pg 34 
   Image 3.2   Pg 38 
   Image 3.3   Pg 40 
 
CHAPTER 4  Figure 4.1   Pg   51 
   Figure 4.2   Pg   52 
   Figure 4.3   Pg   62 
   Image 4.1   Pg   63 
   Image 4.2   Pg   64 
   Image 4.3   Pg   66 
   Image 4.4   Pg   67 
   Image 4.5   Pg   68 
   Image 4.6   Pg   69 
   Image 4.7    Pg   71 
   Image 4.8   Pg   72 
   Image 4.9   Pg   74 
   Image 4.10   Pg   75 
   Image 4.11   Pg   76 
 
CHAPTER 5  Image 5.1   Pg   81 
   Image 5.1a   Pg   98 
   Image 5.1b   Pg   99 
   Image 5.2   Pg   82 
   Image 5.2a   Pg   90 
   Image 5.2b   Pg 100 
   Image 5.2c   Pg 101 
   Image 5.3   Pg   84 
   Image 5.3a   Pg   93 
   Image 5.3b   Pg 102 
   Image 5.3c   Pg 103 
   Image 5.4   Pg   85 
   Image 5.4a   Pg   70 
   Image 5.4b   Pg 104 
   Image 5.4c   Pg 105 
   Image 5.5   Pg   85 
   Image 5.5a   Pg   88 
   Image 5.5b   Pg 106 
   Image 5.5c   Pg 107 
   Image 5.6   Pg   86 
   Image 5.6a   Pg   92 
   Image 5.6b   Pg 108 
   Image 5.6c   Pg 109 
   Image 5.7   Pg   89 
   Image 5.7a   Pg 110 
 CHAPTER 6   Image 6.1   Pg 129 
   Image 6.2   Pg 129 
   Image 6.3   Pg 130 
   Image 6.4   Pg 137 
   Image 6.5   Pg 137 
   Image 6.6   Pg 137 
   Image 6.7   Pg 138 
   Image 6.8   Pg 143 
   Image 6.9   Pg 144 
   Image 6.10   Pg 145 
   Image 6.11   Pg 150 
   Image 6.12   Pg 150 
   Image 6.13   Pg 151 
   Image 6.14   Pg 156 
   Image 6.15   Pg 156 
   Image 6.16   Pg 156 
   Image 6.17   Pg 157 
   Image 6.18   Pg 162 
   Image 6.19   Pg 163 
   Image 6.20   Pg 167 
   Image 6.21   Pg 167 
   Image 6.22   Pg 167 
   Image 6.23   Pg 168 
   Image 6.24   Pg 173 
   Image 6.25   Pg 174   
   Image 6.26   Pg 180 
   Image 6.27   Pg 180 
   Image 6.28   Pg 180 
   Image 6.29   Pg 180 
   Image 6.30   Pg 180 
   Image 6.31   Pg 181 
 
APPENDICIES “MeBox”   Pg     i 
   The Scream   Pg     ii