Wednesday 29 February 2012

Rare Disease Day

It's the 5th international Rare Disease Day today. This year's theme is Solidarity.

I don't have anything particularly groundbreaking to say, but I'd like to write a bit about what it feels like to have a rare disease and why solidarity has been so important to me in my bendy journey.

Please also read BendyGirl's post on it here.

I'd like to start by saying that I am one of the lucky ones.

My condition is relatively common - I'm not one of seven people in the world with it, it's not a never-before-seen syndrome without a name, about half of doctors I mention it to show at least a brief flicker of recognition, there are national support groups for the different aspects of my condition, there are specialists who dedicate a large portion of their working life to the management of bendies. And, diagnoses are increasingly common as awareness increases - it's certainly more common than it was thought 10 years ago, although it's still rare. I have two friends with the same condition that I knew before I was diagnosed and many more since.

I am also lucky because my condition is sort-of not life-limiting. 'Sort-of' because it is sometimes. Other subtypes have a worse prognosis, indeed my subtype is commonly said not to be life-limiting at all, but you don't have to spend long in the online EDS community to know better.

For me (and everyone's experience will of course be different) having a rare disease means being disbelieved, means frustration, isolation, exhaustion and endless reams of paperwork. It means days when all the rubbish surrounding EDS is almost worse than the symptoms themselves. It means sharing my personal medical details with every medic who asks in the hope that they'll recognise EDS in someone else. It means constantly finding that bits and bobs of your life are 'not normal' "what do you mean you can't scratch the whole of your own back?". It means setting firm boundaries - with friends and family, with healthcare professionals, with work, with myself. It means constant self-advocacy.

It also means community - other bendies, other folk living with rare conditions, other disabled people. Other people who can say that most powerful phrase "me too". It means being able to draw on collective wisdom and to share tips in turn. It means finding out which friends will come and sit in front of the TV with me while I slur at them incoherently, or to scrape me of the floor if I fall and Beanie's out, or remember when I have important appointments, or celebrate the small acheivements, or advocate for me when I just can't anymore, or offer a shove without being asked and then take off at a run cackling maniacally, or remind me that it is enough simply to be me.

It means identifying as disabled and solidarity with other disabled people in the face of discrimination and cuts to benefits and services or lack of provision in the first place. It means recognising the intersection of non-privileged identities and solidarity with other people who face discrimation, violence and oppression because of their race, gender, sex, sexuality, class, or other factors.

It means feeling really, really alone and then realising that you aren't so alone after all.

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