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I just got this post below on fb; substituteME for EDS nd it could apply to ME .....are these the same disease or what?
An Open Letter to those without EDS- Please read.
by
Jessika and Jen's Daily Zebra Battle Updates on Monday, January 21, 2013 at 2:08pm ·
Open Letter to Those Without Ehler’s Danlos Syndrome
Having Ehlers Danlos Syndrome means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.
Most people don’t understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand…
… These are the things that I would like you to understand about me before you judge me…
I am scared. I don’t know what the future holds for me. Will I end up in a wheelchair or will I be one of
the lucky ones. If you find me being quiet and reflective, please don’t think I am upset with you. I am
trying to sort out my fears.
I am sad. EDS has taken so much away from me. I can no longer do many of things I enjoy doing. I
sometimes have difficulty just completing simple tasks. If I appear sad please understand it is EDS I am
upset about, not you.
Please understand that having EDS doesn’t mean I’m not still a human being. I have to spend most of my day being very careful about what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, work and my family and friends etc., and most of the time I’d still like to hear you talk about yours too.
I still want to be part of the “gang.” Please continue to invite me to participate in activities. I’ll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with
everyone else, but it hurts when you exclude me. Maybe I can’t skate with everyone else but I can bring
the hot chocolate and watch.
I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am
dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu (tired, achy and sore). Please keep that in mind.
I want you to know that the pain and instability etc. from EDS moves around. Please don’t attack me
when I’m worse by saying, “But you did it before!” If you want me to do something, ask if I can and I’ll tell you. Just because I climbed the stairs yesterday (or an hour ago) doesn’t mean I can do it today (or in another hour). Yesterday (or earlier) my shoulder was throbbing; today (now) it is my knee, who knows what it will be tomorrow (or later). Also understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing those five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. Similarly, EDS and the symptoms of it may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me worse.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it
right now – it can’t be put off or forgotten just because I’m doing something else more exciting. EDS does not forgive its victims easily.
Please understand that I can’t spend all of my energy trying to get well from EDS; it is incurable (and
genetic, so unless I can change my gene’s I cannot change my disease/disorder). With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability like EDS is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with EDS or any chronic illness/disability.
Finally, please remember that I am the same person I was before I was diagnosed with (started getting
symptoms of) this; EDS doesn’t change the heart and soul. I still laugh, I still cry. I still love, I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you. But most importantly, I need you to understand me.
I would like to be treated as a friend and not be bullied and teased.