My Life with Ehlers-Danlos Syndrome

This is a touching story from Danielle Davis who has been struggling with EDS and other related disorders. It includes an anonymous message for those without EDS. By Michael Hyatt of Rock thiz Magazine

Dani Davis

“I am Danielle Davis and this is my journey.

EDS (Ehlers-Danlos Syndrome, Hypermobility Type)
POTS (Postural Orthostatic Tachycardia Syndrome)
Bipolar Disorder (Type I, Mixed Episode)
PTSD (Post-Traumatic Stress Disorder”

Open Letter to Those Without Ehlers-Danlos Syndrome

“An EDSer friend shared this with me, and in honor of EDS Awareness Month I wanted to pass it along. The original author is unknown, but it is a perfect way to describe our lives to those without EDS. Perhaps, you might want to send it to some of your friends and family, as well. I know in my circle, I have a few people that I think really should read it. I don’t know if they will, but it is worth a shot. Good luck friends, zebras, spoonies – we are just just part of one big family on Mother Earth, one big family with really messed up collagen. 😉

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 angry. 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 angry please understand it is EDS I am angry with, 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.

Please don’t assume you know what is best for me. EDS has affected my joints and such, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. 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.

Please don’t tell me you know how I feel. You don’t. Don’t offer me sympathy; I don’t want your pity. But do offer me support and understanding, which I appreciate. 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.”

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