I have Ehlers Danlos Syndrome Type 3, more commonly known as Hypermobility Syndrome. Please feel free to Google it. Don't worry if you don't know what it is - some doctors haven't heard of it.
EDS is a genetic disability, but not everyone with the gene will suffer problems. I'm the only one in my family that suffers to the extent that I do; my cousin has a few problems but to a lesser degree. I do not have all of the problems that are related to EDS3, only some.
I am in a state of constant and chronic pain. I walk with crutches, and from time to time use a wheelchair; April will see the three year anniversary of the last day I could walk on my own two legs. My joints dislocate, and I have stretch marks because my joints move more than my skin allows. Local anaesthetics have no effect on me whatsoever, but it is unlikely that I'll be believed when I tell someone that. Pain killers don't work either, for anything. I'm prone to insomnia, fatigue, depression. Interacting with people tires me. I'm clumsy, I have awful proprioception, and I fall over a lot.
This isn't even the full list of problems, but I thought I'd stop after just the main ones.
I get pity for all of that. I get asked questions like "Have you tried this? What about pain killers? What about this type of therapy?" and believe me when I say I do not mind talking about my disability. It fascinates me how one collagen mutation can cause an entire plethora of problems.
I do not want pity. I do not need to be told that there are Olympians with my disability. Hats off to them, truly, I think that is amazing. I can't get out of bed some days because it feels like my muscles are ripping away from my skeleton. I used to be able to run for a bus and catch it, and now I often need help to stand up.
I still don't want your pity. Yes, I need help from time to time to do something I used to be able to do without thinking. That does not give you the right to look at me and say "I'm sorry to hear that" or "You have my pity" because believe me when I say that is not productive.
I am really stubborn. You cannot believe just how stubborn I am. I get up every day and try to get out of bed because the only alternative that isn't dying is staying in bed and being miserable. I'm not brave for doing this, I'm not some sort of inspiration. I'm fighting my own body and my own mind. That isn't anything special. I laugh about the advantages of my EDS because I have no other way of dealing with it.
I've been told by a several friends that I'm their inspiration; if I can see through each day then so can they. You know what that makes me? I'm their "It could be worse". "Don't worry, it could be worse, you could be Ellana." No. Don't do that. Don't have someone else as your "It could be worse" and if you do, for crying out loud never tell them.
I'm not brave.
I'm not an inspiration.
I'm not special.
I'm disabled, but that isn't all of me.
I'm an author. I'm a poet. I'm a reader. I'm a crafter. I'm a woman. I'm a daughter, a cousin, a niece. I'm writing this because I have a voice. I am able to share what I think.
I know that it is difficult for someone who isn't disabled to have any sort of understanding of a daily battle. I know it is difficult, because I was not born disabled. I have fallen into the same traps that you have: I've asked people about therapy and if they have tried various things like acupuncture and medication; I've wondered if I should offer help, or if it would be seen as treading on someone's independence (the answer to that is to offer help if you think they need it; if they say yes, do it, but if they say no, don't lurk as if they are about to break... but a note for disabled people: don't be an arse if someone offers you help and you don't need it, just politely turn it down).
I walk with crutches, yes, and I do often need to take a break. I have a voice and I am able to speak up if I need a break; you don't need to constantly ask. Nothing will make my pain better, but there are ways of making things easier. One of them is for everyone to see past my crutches. Yes I need them, but I also need glasses to see, food to eat, and air to breathe. Chances are that you can probably see past the fact that I'm human and need to breathe to live; if you can do that, you can see past the crutches or the wheelchair too. Talk to my face, but if I'm in the wheelchair I can honestly say you might look like an idiot if you bend down to talk to me. Seriously. Think about the people behind you.
Life is difficult. Life is wonderful. Make this world a little better by asking what we need, not giving what you think we need.
See you next week
E