Some New Credentials

Although the concept in itself has never really impressed me, I’ve often thought having letters after my name would show a life of learning and personal evolution. Now I have loads. I’ve got an impressive list of letters that sit snugly against my name. Yet none of them come from academia, nor do they come from professional or career development. The letters after my name are all medical, but not from years of studying medicine and science but from years of being ill and gathering a plethora of diagnoses and conditions.

‘Sarah-Jane Grace – EDS HT, CRPS, FMS, PoTS…’ I’m not convinced this is something to be proud of but after decades of question marks, not knowing, no clarity, dismissals and misdiagnosis they matter. Not because they change anything but because they give me a reason for being the way I am and this has enabled me to make peace (well, kind of) and let go of (well, almost) the constant chasing of answer-seeking.

When things go wrong with our body it’s hard to say ‘oh, well’ and not want to know why. I’m a cerebral soul and seeing my body fall apart without knowing why wasn’t acceptable to me. How could I get my head around it and find a way to accept it when I didn’t know what ‘it’ actually was? After decades of poor health, finally getting a label at my not-so-tender age didn’t feel particularly liberating (although admittedly I did want to send framed copies of my diagnosis to all the doctors who’d previously dismissed me) but it finally allowed me to make sense of all of the seemingly not so random little things that have gone wrong with my body.

Yet, my labels mean very little, even most doctors give me blank looks when I reel off the list of what’s wrong with me but they have given me a way to gather together all of my many broken bits into a neat little package that makes being me easier for me. It may make me feel happier to be a walking medical encyclopaedia but, far from feeling relieved and elated with a diagnosis, it feels frustrating to realise that doctors either still a) don’t believe me or b) don’t care. Despite fighting for years to gain some clarity, it still doesn’t really mean anything other than with the specialist doctors that specialise in such conditions and they’re rarer than the excrement of a rocking horse…

Of course, I’m lucky to now be in the hands of those rare specialists. There’s no cure for what’s wrong with me and my labels will hang around my neck for the rest of my life but with the help of the specialist specialists I’m hopeful to find ways of living better despite the challenges. I see these doctors as I want to improve my quality of life. Like most fellow souls with EDS and PoTS, I don’t tolerate medication well. One specialist roared with laughter when I said how ill I felt after taking one particular drug, the dose was so small she said it was like ‘trying to move house using only a backpack’ (she’s German, so I can only assume it’s a very funny saying in Germany!). I’m not likely to find a miraculous solution that means I wake up one day full of the joys of spring as I dance carefree in the meadows of life but just being able to get out of bed without wanting to vomit or pass out would be an improvement.

Living with chronic ill-health is hard, it’s even harder when it takes your whole life to get diagnosed and when your conditions are considered ‘rare’. Doctors tell me I’m complex, interesting, fascinating and intriguing, yet I don’t want to be any of these medically speaking, I want to be ‘unremarkable’. I’ve endured some eye watering tests in the quest to find clarity and understanding. It’s amazing what modern medicine can do although just occasionally I find myself wishing that modern medicine couldn’t, particularly when I have vivid flashbacks of my MRI Defecating Proctogram…

So, here I find myself with a list of credentials which, in many ways, don’t mean anything, but now I know what’s wrong with me I can start to make peace with being the way I am. It’s hard not to start doubting oneself when so many doctors have previously dismissed me or suggested I’m just a hormonally imbalanced woman. I am that of course but I’m me as well…