Welcome

Dear friend / loved one,
I’m sending this letter to help you understand my feelings as I deal with my EDS and the changes it’s brings to my life. I am scared, I don't know what the future holds for me. Will I end up disabled, 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 the simplest of tasks. If I appear angry please understand it is the disease/syndrome I am angry with, not you.

Please don't assume you know what is best for me. EDS has affected my joints, 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 your are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me from various outings. Maybe I can't skate with everyone else but I can bring the hot chocolate and watch.

Don't tell me how Auntie Mary cured her joint problems by drinking vinegar or any other supposed remedy. I have done so much research and I keep up on current treatment options. I speak with my doctor (s) regularly, if there is a possible treatment out there, I will know about it.

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. I want you to know that the pain from EDS moves around. Just because I climbed the stairs yesterday doesn't mean I can do it today. Yesterday my shoulder was throbbing; today it is my knee, who knows what it will be tomorrow.

Finally, please remember that I am the same person I was before I was diagnosed with this; EDS doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I’m being 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.

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That is the website for the Ehlers-Danlos National Foundation. It has been my hope and support link for the past year since I got diagnosed. I hope you use that site for more information. I hope this blog will open you up to the personal side of Ehlers-Danlos syndrome (or just ED). I hope this blog will open your eyes to the world of a disabled person. I want to be a voice that stands out among many. Ill try and keep this updated once a week, probably more. I'll post personal experiences, I'll post stories or letters like the one above (all written by others with chronic illness, or those written with ED). I hope you open up your eyes and see the world in a new light. I hope I can keep you a faithful reader of this blog.
Thanks!

Caitie :)