I’m a second year Creative Writing student and I also work part time for Wimbledon BookFest and Standen Literary Agency. Though being able to work and write is great, there’s a lot I can’t do. I don’t go out often, I sometimes miss my lectures and I don’t get involved in a lot of campus events. But because my illness is invisible and because I ‘don’t look sick’, I’m judged and misunderstood a lot of the time by people.
I’ve been suffering from Ehlers Danlos Syndrome Type 3 – also know as
Joint Hypermobility – since my second year of A Level study.
Hypermobility is a connective tissue disorder that comes from having too
much collagen in your muscles and organs so they overstretch, lack
stability and cause multiple issues in a person’s body. Because of this I
also suffer from Chronic Fatigue Syndrome, reoccurring migraines and
slight IBS. I therefore don’t really know what it’s like to not wake up
exhausted and in pain.
People think that being hypermobile is about being double jointed. A lot of dancers and gymnastics are hypermobile, which is easily recognised in the way they manipulate their bodies. I, however, managed to permanently damage my upper back, shoulders, ribs and spine just by studying for my exams.
EDS is highly misdiagnosed by doctors. They’re not very well versed in the condition and commonly pass the problems off as a regular bad back or poor posture because patients can touch their toes or twist their torsos. I want to change this. I want to help educate people on the severity of invisible illnesses.This form of EDS may not literally affect people’s life expectancy, unlike EDS Type 1, but it does sometimes made it unbearable to live.
My condition has worsened since I was 17. My rotator cuffs in my shoulders and the muscles in my neck have been so permanently damaged that I lose feeling in my hands and arms regularly. My ribs move to places they aren’t supposed – to the point of dislocation – and lead to severe heart attack type chest pain. The pain that I suffer from in my back and spine can only be dulled by Diazepam, which is a sedative. My illness is incurable and later in life it can lead to daily dislocations, wheelchair use and replacement surgery.
Everyday of my life is planned, starting from the moment I wake up. Christine Miserandino invented “The Spoon Theory” when talking about chronic illness; for example a sick person has a handful of spoons and you only have so many for that day and every single action takes away a spoon from you. Carrying a bag, shaving my legs, straightening my hair, sitting at a desk – each of these can take spoons away so that I can’t make dinner that day or stay up and write an essay or go and see my friends for drinks. It makes me scared to do a lot of things; I have planned things and bailed at the last minute because I’m afraid that I’ll be in so much pain and no one will understand or I won’t be able to function for the next week because my brain will be too fogged or I’ll have used all my ‘spoons’ and therefore won’t be good company for others. It does make it difficult to get out of bed some days.
But I don’t let my illness run my life entirely. I’ve moved away from home and came to London to study Creative Writing. I moved in with my boyfriend of almost three years now. I’ve almost been picked up by a Literary Agent twice for my own writing. Though a fulltime job may be too much for me right now, I plan to become a writer, agent or publisher in spite of it. At 21 I still rely on the people around me to hold me up – sometimes literally – but I will have children and I will live with my condition.
I want to show others that a chronic condition doesn’t have to ruin you, just like my mum showed me after she was diagnosed with an incurable kidney disease a few years ago. She is the bravest, most wonderful person I know and I want to inspire my children like she has inspired me.
I'm lucky to have found a good physiotherapist up here in London, but not everybody has that luxery - I know I didn't for the first few years of my illness. A lot of people suffer in silence or are misunderstood for years in a many chronic, invisible illnesses. There's little research surrounding EDS and a lot of confusion. After reading this mammoth post, just reposting on your Facebook wall on any social media site can help more people than you'd know. Remember: don’t-dis-my-ability or anyone elses. No one is normal but some people are a little more unique than they look on the outside.
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