I was diagnosed with Ehlers Danlos Syndrome in 2004 after many years of being fobbed off and dismissed by medical professionals. After so long living with increased disability without knowing the reasons why I was relieved just to get an answer. Perhaps naively I hoped that diagnosis would be the first step towards getting better and regaining the many things I'd lost, friends, relationships, career and family.
Day to day my life just is what it is, constant pain, dislocating joints, medications, falls, choking, incontinence, mobility equipment and many other indignities are always there but things I deliberately choose not to consider. I make jokes out of difficult situations, give mumbled half answers when people ask how I am, or just insist I'm fine even when it is patently obvious to everyone that I am anything but. I do this because to focus on the difficult things would make me incredibly depressed and to be blunt, I have enough problems already. Depression would just tip me over the edge. So instead I slap a smile on my face, no matter how hard or horrible the day. I smile because otherwise I'd cry and that just gives me a headache. I choose to be happy by focusing on how fortunate I am to have a roof over my head, to be able to see the sun shine, and to live in a country which still, just about, believes that looking after those who are more vulnerable is a collective responsibility.
Filling out these forms has been a depressing and traumatic process for me. What I expected to be a straightforward task of explaining my disability has actually been a complex and difficult confrontation of the issues I face but choose not to think about on a day to day basis. Not only does it hurt my hands, but it breaks my heart to type the words I avoid saying out loud. That for the past six years I have fought every day; to gain an understanding of my condition, to take the correct medications, to eat the right food, to do the endless, painful, frustrating and incredibly boring physiotherapy exercises, to accept having to use a wheelchair, to learn to accept that the physical pain which is my constant companion will never go away, and will instead be joined by the emotional pain of a million tiny losses.
It has taken me weeks to fill out this form as every time I try to answer a question I give up. How can I explain what it's like to have forgotten how not being in pain feels? That even the smallest movement can cause one or more joints to dislocate. What it's like to try and do even the simplest tasks with joints that won't hold themselves together, let alone do anything of practical value. When I dislocate my knee just rolling over in bed it's easy to swear a bit and refuse to think about the white hot pain, or subsequent tears, or the shoulder that's dislocated trying to relocate the knee, but that filling that information out on a form defeats me. All those individual dislocations and consequent lost opportunities I ignore in favour of those created, but to see them in glaring detail, not just once but the 53 different ways required by an official form is too much for me to bear.