Thursday, 1 May 2014

Making our invisible, visible.

This is me.  My name is Clair and I have a medical condition you have probably never heard of.

I have Ehlers Danlos Syndrome - Hypermobility Type.  I also have Postural Ortostatic Tachycardia Syndrome and Sicca Syndrome.  I've been ill for nearly 25 years.  I will never get better.

People tell me, "At least you don't have cancer."  I'm grateful I don't have cancer.  My health conditions are unlikely to kill me but I will suffer from debilitating symptoms and pain for the rest of my life.  There is no cure and treatments will only help me manage the symptoms.

I can't do many things that most people take for granted, I can't walk far, I can't work, just getting out of bed can be so exhausting I can't do anything else.  I don't have good days, only bad days and worse days.  I am never symptom free.

I am in constant pain, my joints partially dislocate, I bruise easily, I get dizzy and often collapse when I stand up because my blood pressure drops very low and my pulse races.  My autonomic nervous system doesn't work properly, my muscles don't relax properly,  there isn't a single part of my body that isn't affected.  My body has to work hard just to sit upright in a chair so I get tired quickly and having a rest doesn't make me feel better.

I try to live life to the fullest but people struggle to understand how ill I am when they see me out and about looking 'well'.  Ehlers Danlos is an invisible condition.  If you tell people you have cancer they understand.  You either go into remission or you die.  People don't understand when one day they see me walk a few yards from the car to the corner shop but the next day I say I'm too ill to get out of bed.  It's not because I'm depressed or scared of moving, it's because it wipes me out so much I'm not physically capable.  If you run a marathon could you run another one the following day?  And the next day?  And the next?

I'm not faking it for attention, I'm not lazy or depressed.  This is just how it is.

The hardest part about having an invisible condition is having to fight for the help and support you need.

It took 23 years for me to be diagnosed.  The NHS had all but given up on me.  I had to research my problems, find the right doctors to see and then I had to pay for a private consultation just to get a diagnosis.

The fight didn't end there, I am still fighting for appropriate treatment and have to travel all over the country and pay to see the right doctors and specialists, because unless you live in London there is next to no help on the NHS.  I also have to fight for social care to enable me to manage my health and look after my family, and fight for disability benefits so I can afford to buy equipment, medicines and therapies.

I'm not a teenager dying of cancer, I know I'm not going to raise a million pounds but I would like to spread the word about Ehlers Danlos Syndrome.  Hopefully you can find it in your heart to help people like me by donating to Ehlers Danlos Support UK.

Thank you!

BTW the hippo in the photograph is a wheat bag, I zap it in the microwave and it helps me deal with the pain.

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