I guess I'm writing this post because I am a follower of Carly Findlay's
blog. Carly wrote last week about the Pin Post and Pose initiative as part of the International Day of Disability. Carly's warm, funny and insightful posts have inspired me to share the story of my own disability. I don't openly talk about it often, in fact I don't think I've ever mentioned it on this blog.
I have a disability. When you first meet me you probably wouldn't realise it. In fact a lot of my friends have no idea that there's anything wrong with me, and if you asked them about me they would probably say that I was 'clumsy' or 'uncoordinated'. I am both of those things, but I'm also a sufferer of a rare genetic disease called Ehlers Danlos Syndrome.
EDS is a chronic, debilitating condition that effects everything from joints to immunity to vascular health. You can read more information about EDS
here, but briefly, EDS is a genetic mutation that affects the collagen found in connective tissue. EDS patients are very hypermobile in most or all of their joints and suffer a range of symptoms including chronic pain, chronic dislocations, osteoarthritis and mitral valve prolapse. There is no cure for EDS.
For me, EDS means these three main things:
- chronic pain, that means there is always
something hurting. For example, right now I can say that the following hurt: my left hand, right elbow, left ear, lower back, left hip, left middle toes, jaw, right rib cage. I try not to take painkillers anymore because it takes about 6 nurofen to have any effect on me.
- dislocations: I can dislocate anything in my body, even my ribs and the lenses in my eyes. This means that I am unstable and likely to fall, drop things, hurt myself doing everyday mundane tasks (eg. brushing teeth). I even dislocate while I sleep. The dislocations sometimes hurt, sometimes they don't. My shoulders are almost permanently dislocated, they just feel uncomfortable and weird.
- Mitral valve prolapse: one of the valves in my heart is slowly tearing away from the muscle. This means I am prone to palpitations, low blood pressure, dizziness etc.
It is very hard for me to admit there is something wrong with me, which is bizarre because it is a very big part of my life and effects every aspect of my life. Yet, I am ashamed to admit that I have a disability. It makes me feel uncomfortable when I am offered help, it makes me feel worse to ask for help.
I makes me feel hopeless and embarrassed when I ask for help and that person asks me why I can't do it or tells me I'm not trying hard enough. I hate it when I get made fun of because I don't drive or because I walk funny or because I'm always sick. I hate having to explain what is wrong with me. It sounds like I'm making excuses.
I am mortified when doctors have suggested that I apply for things like a Disability allowance or when I have ask for special consideration at Uni. I don't see myself as someone with a disability... I tell myself that I am not like 'those other people', the ones that the media and society have led us to believe are hopeless. I even tell myself that I am different to other EDS sufferers- the ones who are in wheelchairs and can't work or even manage their shopping. I work full time and study full time. I have achieved many awesome things. I am so much MORE than EDS- I can't be defined by it.
Yet, I can't deny it.
I have days where I am in agony all day, I hate cold weather and when it rains I ache all over. I have days where I can't do anything except lie down, but then I can't be in the same position for too long because I dislocate. I have had about 13 operations and spent a significant part of my high school years in hospitals and in recovery. Most of these operations were awful and traumatic and featured screws, wires and slings. All of them failed.
I feel like I live a double life- the EDS one and the other one- the one where I can be fun, interesting and do whatever I want with no consequences. But thing about EDS is it's unpredictable and permanent- my symptoms
will only get worse. Often, I feel like I'm waiting for the EDS life to catch up with me, that it will take over the other part of my life, that it will become everything. That I will only identify as an 'EDS Sufferer' and nothing else.
That scares me.