Ehlers-Danlos Syndrome Support Group

Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.

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'keeping it positive' with EDS

Hi everyone,
I am new to the whole support group/message board thing. I was diagnosed with "classic type A" EDS when i was 5 years old. Since then i have dealt with numerous orthopedic health issues. In 2007 I was near death after an accident that stripped one of my main arteries and ruined my right knee. 18 months ago I broke my left ankle in several places and required surgery, and just last Saturday i did something silly at home, tripped, and fractured my right ankle the same way i fractured my left. I am now home again, unable to go into my office while i wait for surgery next week.

I am 28 years old, an Office Manager for a physician's office. I am fortunate to have a wonderful family and support system, but unfortunately none of them deal with EDS on a daily basis, therefore none of them can "support" me like you guys can.

I am a self proclaimed "girly girl", who loves fashion, beauty and heels. After my accident in 2007 i was told I could never wear heels again. This is no big deal to some, but to me it was a part of who i was, another part i felt was stolen from me from my EDS.

My boss is wonderful and allowing me to work from home, and hopefully i'll be able to return to work soon.

I find myself sitting on the couch while the "normal world" goes about its business, and i'm jealous. Pissed off. And sad.

But it's our duty as people with a disorder to be proud of how far we've come. To embrace the good days and understand that EVERYONE has a struggle of one kind or another. This is ours. Some days it may seem like the world is against us, trust me i've had my share of "why me" conversations (and pity parties!). But this is our struggle to power through. we are in this together, we aren't alone in this. Some of you probably have it way worse than me, and for that i'm truly sorry. i wouldn't wish this on my worst enemy.

But we have to look at the positives in life, or the depression will swallow us whole. Dig deep and find the things you can be positive about. All of our struggles (they're daily struggles, i know) are intertwined with happy moments, and they're there if you look for them.

Unfortunately EDS is just a part of my life. For the rest of my life i'll have to be "careful" and won't be able to do everything that 20-somethings can do. But i'm alive, i'm breathing. I have a pulse and i have something left to do in this world, and i don't intend on laying down and letting EDS stop me from my life.

It may win little battles here and there...but it will not stop me from winning the war. :)

Replies

deleted_user
deleted_user

Love this post!
Hope to hear more from you.
calebjax
calebjax

I appreciate the wonderful sentiments expressed in your post, i however am at the other end of the spectrum today, i woke up finding myself in a dark place and feeling lost.

But keep positive, it helps to get through some of the tough times.....Kris>>>>
smheain
smheain

I just got home yesterday from my 3rd psych ward hospitalization for severe depression. My EDS is quite bad and like blairmoore and all of you in this group, it has taken an extreme toll on my life. I too am fairly young, but stuck at home, unable to work, and having to readjust my views, expectations, and ego about myself. I've been dealing with the loss of my mobility for about 10 years now, and then this past summer I developed some sort of arthritis in my hands (as yet unidentified) and all the new hobbies I came up with to replace all the physical things I used to do, are now lost to me as well. On bad days, my anger, pain, and shame are almost unbearable despite having 2 wonderful boys and the best husband in the world. I am doing much better now with the help of medication and therapy; and I want you all to know that it's OK to have all these horrible feelings. This is a terrible disease! Just seek help when you need it, know that you are not alone, focus on what you CAN do instead of what you can't, and don't be afraid to lean on your loved ones.