Who am I? A Chiari?
The 'interesting case' in cubicle 4?
123456789 (my hospital number)?
My doctors 10 'o' clock?
A rattling collection of flesh, bones, co-codamol and Fludrocortisone?
Me?
Who is me anyway? To be honest, since becoming chronically ill, I am not really sure.
My identity is the thing I have grieved for the most since becoming ill. All of us are like jigsaw puzzles with lots of pieces that all fit together to make us who we are.Until a diagnosis of a long term illness is thrown into the box! Then, mysteriously those corner prices that are the foundations for the rest of picture to build from go missing . . . And then bits in the middle disappear.
BC (Before Conditions), my jigsaw picture was looking good - it seemed complete. We all have different pictures, but they are all made up of the same pieces: our career hopes; jobs; family; friends; partners; hobbies; and our health (mental and physical). When the jigsaw pieces representing my health were unceremoniously chewed up, the rest of the jigsaw began to fall apart too.
My career ambitions as a doctor disappeared as I left medical school, and with that, a little piece of my social life was lost. The pieces that represent my friends and family became a little tired looking - battered and worn but still there ... The pieces with sailing, rowing and running on them were stolen from me. 
What was left? Nothing recognisable as me. Medications, appointments, depression, pain, dependency, relapses, walking aids, isolation and the sense of being a burden.
But although many of the pieces of my jigsaw were stolen and are never going to be replaced, I have been adding some of my own pieces to make the new me as compete as possible. A new passion for self-management, volunteering for the Expert Patient Programme and a part time job with the Patients Association. The piece representing my career hopes now holds more passion that it ever did before. I haven't been able to replace all of my hobbies, and still grieve for the BC jigsaw, but the AD jigsaw is one I am starting to feel a little proud of. I have started to take a little control and add my own pieces to the jigsaw, and built the good bits myself.
Now if only I can 'misplace' those pieces representing the
Chairi, POTS, EDS and the depression . . .
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