Tuesday, 4 July 2017

a diagnosis, and why that's so important

back in 2010/11, we went to our GP saying I was having a lot of pain in my legs. I was referred to physios, a neurologist, to have orthotics. no-one ever said there was something specific wrong. I was periodically discharged and shoved back in to various services until 2014/5 when everything got worse - put into more departments. they all said I shouldn't be under them.

fast forward to 2017, in widespread body pain every day, walking with a cane, struggling to stay up for more than a few hours. I got through my exams hanging by a thread, each day another blow.

a few days ago, I saw an adult rheumatologist. I saw a paediatric one last year, but he was a bit useless; he said I couldn't have one condition because I was going to school and he said another was outdated.

I didn't go in with any expectations - I've been pushed from pillar to post for years on end and I'm so exhausted that I'd kind of given up. but this doctor was brilliant... she didn't have any context about me because it was the first time I'd been to that hospital and my referral letter apparently got lost, and she actually let us talk, she actually listened.

I walked out half an hour later with what I'd wanted for so long. doctors have always said I'm "really hypermobile" but have never given me the diagnosis, resistant. it was so ridiculously simple that I nearly cried - she did the test (beighton/brighton) and was like "...yeah no you're definitely that".

so. now I feel like I'm not faking. now I feel like I have a route forward. yes, we have to make more referrals and it's going to take a lot to get me to a better place. but, it's going to be slightly easier.

my name is Charli, and I have HMS/hEDS.

it's not everything about me that you need to know, but it's a big part of my life and has been since I was 10, and so, I don't want it to be erased. I don't want people to tell me "your disability doesn't define you", because in a sense, it does - and that's okay.

it defines me because it changes my entire life. it doesn't define me because once you know that, you can get to know everything else. more than one thing can define me, and that is okay.

a lot of medical professionals say "you shouldn't be looking for a diagnosis, we just need to treat the symptoms" but I think they're wrong. if there is a diagnosis, it should be made, because then you understand the body as a whole. for years, doctors have been looking at my legs, my hands. never my whole body together.

friday was overwhelming. I might have thought that that was my condition for years but... I never felt valid. I don't have anything against self-diagnosis, but I personally can't do it because I don't feel valid.

for some people, it's just an acronym. but for me, it's a twist in the path. this long, long metaphorical path to me being in a place where I can function. not for me to "get better", because that's not going to happen, but there might be things that help reduce it all... and to me, that's enough.