Published: 14/04/2023 Tags: Stories

I keep my hopes up and try to keep a positive attitude

TW // Discussion of self-harm

I was 37 years old when I was diagnosed with Ehlers-Danlos syndrome. I am 47 now. I have been in pain for as long as I can remember.

I didn’t start walking until I was 15 months old. I have had to wear corrective shoes all my life to correct my flat feet. This disease has caused every single health problem that I have. I have heart problems, skin problems, acid reflux, multiple dislocations, pots, mast cell activation, and even my mental disorders can be blamed on Ehlers-Danlos. I still feel like doctors don’t listen to me. I would have to see a different doctor every day if I went to all the appointments I need to go to.

There was a point in my life when I was in so much pain, I felt like I could saw my own limbs off, and I would feel better. My own family thinks I am just a big faker. Like I can fake the 8 surgeries I’ve had on my feet or the 3 on my hands. It’s going to be one surgery after another for the rest of my life. Right now, I have a pelvic and anal prolapse that I need surgery for. I feel sick and dizzy, tired, and worn out, and I’m in pain every day. I am so glad that I finally know what is wrong with me. I used to think I was just a lazy, worthless piece of crap, who couldn’t withstand pain. I didn’t understand why I absolutely could not make myself get up and do the normal things people do every day, like go to work, or clean my house.

I still have days where I look down on myself. I have had to do a flip-flop change of attitude and make myself happy. One day I just decided I wasn’t going to be miserable anymore. You only live once, and it’s not worth it. I am grateful and appreciate every single second of this life. Mostly because of my children. I worry about them though I have 2 girls, and even though they didn’t test high enough on the Beighton Scale to be diagnosed with Ehlers-Danlos, they still have lots of symptoms of it.

I took them to a geneticist at Children’s Hospital, the only one we had in the state at the time. It took us 6 months to get in to see him. Then when we finally did go, he canceled, and we had to wait another 6 months.

I want my girls to dance every chance they get to take. I want to be able to dance with them. I don’t want them to be stuck like I am. I realize that there is a lot more doctors can do now, than there was 10 years ago when I was diagnosed, but I still don’t think they listen. I keep my hopes up and try to keep a positive attitude. I’ve already missed out on too much in my lifetime. Sometimes I wish I had a robot body, so I could run and play without being in pain, maybe one of these days!

I have done lots of research on my own on my disease. There isn’t anything about it I don’t know already. Now I am leaning on synthetic biology to help me out (maybe one of these days). I wish there was some kind of study near me I could be a part of. Until then, I just pray to God and try to keep a positive attitude. I came up with this saying, “They say make lemons into lemonade, but I like lemon flavored and scented everything. that’s my way of saying every day is beautiful. Even with Ehlers-Danlos syndrome.

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