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I was diagnosed at 42 but all the signs were there from the start. As a child, I would sit in the ‘W’ position, I would often stand with my feet completely flexed so all the weight was on the outside ankles, I could do splits both ways and I got very tired walking. In my late teens, I started having really bad digestive issues. Mostly diarrhea but also cramps that were really painful.
I spent years trying to get help. Some doctors dismissed me with “you’re stressed, an overachieving student, I’ll prescribe ulcer medication” although I had no ulcer. Other doctors really tried to help but couldn’t find the cause of my strange digestive system. I felt like a lab rat.
In the end, I started testing things myself. First I stopped with milk products and I got so much better, meaning I had time to reach the toilet almost every time. I was so happy and relieved just to achieve this. After some time I realized that this wasn’t good enough so I removed gluten. Today, many years later, I have reached a balance of very little gluten but some milk. By balance I mean a diet that works in everyday life while making sure my digestion is okay.
At 20, I hurt my ankle really badly for the first time. At 25, I dislocated my shoulder for the first time. It has snapped twice since. Giving birth, the epidural didn’t work on me and this caused panic since the birth was complicated. In the end, they had to pull my son out which dislocated my tailbone.
At 38 my right knee overstretched, my cross ligaments didn’t snap, only extended to “overcooked tagliatelle”, and they’ve stayed that way, useless. I had to have an operation to carve away part of the cracked meniscus. The anesthetic didn’t work and when they realized that, they inclined the bed to lower my head so I didn’t faint.
At 41, the left knee was injured, and the cross ligaments are now useless. I have found that there is one thing that helps me more than anything else – muscles. After my knee operation, my surgeon said, “I saw your ligaments, the way they are. I can’t help you. If I cut them and stitch them back, they will stretch again. I can have one prescription for you and you need to follow my advice. You need to train your muscles, 2-3 times a week, every week from now until the day you die. At 80 you still have to train.”
This doctor knew I did a lot of sports. I did karate and gym training. But he meant, you need more muscle, bigger muscles; training that focuses on only that. So I train, I always train. I’m strong. Stronger than any woman in the gym and stronger than some of the men. This is my best superpower. I have a strong mind, strong muscles and whenever I fall – I stand up again.
I want to tell all zebras: always do your rehab, it’s boring but you have no choice. Between injuries and rehab, train your muscles and get help to do it right. Every time you have an injury you will be stronger than last time. Little by little, you will know your body better and like it better.
My knees are bad but I have thighs like a pony. My shoulder is unstable but all the muscles keep it in place.
Thank you for this community! At least a diagnosis means there’s a word for it and I get to be part of something, I find strength in all our stories and comfort in knowing I’m understood.Tags: activity, Athlete, Ehlers-Danlos syndrome, hypermobile EDS, pain management, self-care
Categorized in: Stories