“Who am I?”, a question I ask myself repetitively on a daily basis. Since being diagnosed with a chronic illness over a year ago, this question has been bewildering me. I am no longer the self I was when I was healthy, but continue to live the life of that healthy person with a new set of roles, practices and limitations.
With no known cure, I am limited to learning just to manage my condition. Unlike in acute illness patients, I will not be able to say “I was once ill, and now I am well”, taking hiatus from my healthy self but have the ability to return back to it. I have to find a new “sick self” and continue to learn the “chronically ill” way of doing things.
The diagnosis process for chronic illnesses has a tendency to be a lengthy one, sometimes taking several years to come to a conclusive decision. Not only are the symptoms common across numerous diagnoses, there is also a sense of disbelief amongst medical practitioners, with not all staff “believing” the existence of the condition. Although improvements have been made, attitudes towards these diagnoses have changed very little, with physical symptoms being treated as psychological illnesses, and in some countries, patients are being misdiagnosed as mentally ill and institutionalised against their will. So when a level of disbelief by others has been experienced, it increases the confusion in perception of one’s past and identity.
In “The Expert Patient: Illness as Practice”, Edgar says:
“One’s sense of self is biographical, and such it is constructed and re-constructed by telling stories about oneself.”
If “storytelling is fundamental to the way in which humans make sense of their lives and their activities” (Edgar, 2012), then how can a narrative be constructed when chronic illness has removed its coherent framework?
I say that this is my abstract so far, because I am not entirely happy with it. I know I rushed the end of it, but wanted to submit before the deadline. I just had a tutorial with Kim and he has reassured me that there is room for editing before the conference, just needed something down to get a general idea of what the presentation will be about. As I am part of the organising team for the conference, this will help group students around themes to form panels of discussion.