Illness and Identity
When you have a chronic illness which limits your life greatly, it is hard to find your own identity separate from that illness. When your every decision is affected by the small capacity the illness allows you, you begin to feel as though you are the illness, a walking, talking disease-in-human-form. This sense is compounded in the young, because we haven't had the opportunity to establish our personalities, likes, dislikes, and distinctive lifestyles that are the mark of an adult individual.
I am painfully aware that whereas a healthy twenty year old girl might be in her second year of university, driving a car and earning money in a part time job, I struggle to complete three year twelve subjects and find some spare energy to read, write, cross-stitch, e-mail and play a computer game. These activities are the sum total of my world at the moment. They are chosen because I can attempt them at my current energy level. It's so difficult to eke out a personality and identity of my own when I am limited to such quiet pursuits. I dream of learning flamenco dancing, having a job, living alone without reliance on anyone, going swimming regularly and learning butterfly stroke (the most energetic of all strokes?), having a pet red-tailed black cockatoo and chocolate brown burmese cat (not entirely compatible, perhaps), studying linguistics and philosphy and socialising as much as possible. This illness forces a solitary life on me, but I adore company when I have access to it.
Meeting others throws my 'walking illness' status into sharp relief. At my age, I'm expected to be studying at university or working, and I dread being asked 'What I do' because of the explanation that follows. I cannot merely say, "I'm in year twelve, studying by correspondence," and expect to have that accepted without question. It is inevitably followed by, "Correspondence? Why?" or, "Aren't you a bit old for year twelve?". Describing CFS is one of the major hurdles this illness supplies, in fact. I cannot help thinking that it ought to be put down as an exacerbating factor along with over-exertion. Firstly, the ignorant listener stumbles over the name, implying as it does that we're just perpetually tired, and then displays acute eye-glazing if they hear a (however brief) description of the symptoms.
Where does conversation go from there? Too often it halts completely. I've often tried to plan potential answers to "What do you do?" in the hope of not having to mention CFS. I'm yet to find a way to manage this feat, however, as the damn disease affects so many areas of my life. And once thought of as 'the sick girl' it is difficult to assert other personality facets in the hope they'll supplant the CFS persona.
My conclusion is that I must strive to achieve a balance between my 'non-CFS' activities and this illness. I can hardly complain that others only see me as a sick girl if I do not foster any other aspects of myself. At least I have the opportunity to do so; for many YPWCs, this illness affects them so greatly they must strive to live each day as it comes. I am grateful for what energy I do have and forever hopeful that someday I will have more.
Lovely green sofa and
orange chair supplied to me by Eric
Henes.
Flashing lights
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