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My experiences with hypermobility

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At the beginning of June, I was diagnosed with hypermobility after seven months of physical and mental pain. And now, after 22 years, I have to change most of what I know.

What hypermobility is in short: People with hypermobility can stretch their joints beyond the point it’s ‘natural’. Elbows and knees overstretch, a (sub)luxation of the shoulder is common and the fingers can bend backwards farther than normal.

There are a lot of people who have hypermobility and most of them don’t know they have because they don’t have physical problems. Sadly, I’m not one of them. I can track back the first signs of hypermobility to my early teens. Normally, doctors won’t test children for hypermobility because they are more flexible than adults. But the problems I had then weren’t caused by flexibilty but by putting too much strain on my joints. I played badminton back then and had a lot of ankle and knee injuries. The short and heavy impacts of the legwork wasn’t good for the joints.

I stopped playing when I was 16 and tried other sports (mostly martial arts), but my ankles and knees were always weakpoints. In the past six years, other signs of hypermobility showed up, like striae on arms and legs and maybe even my bad eye sight is a side effect.

On the 14th of november last year I started to have more extreme pains. My chest hurt so much I could barely breathe and it radiated through my entire body. It didn’t help that we had a very cold winter either. I tried to keep going and I did, but my work for the university suffered from it. I could’ve graduated for my masters degree in september, but now it looks like that will be in february, if not later. I couldn’t concentrate well with the pain I had. I spent most of the time in bed, sleeping, if I could.

Some people didn’t believe the pain was really that bad or thought I was overreacting. This was hard on me, but understandable. They don’t know what I felt and I honestly hope they won’t. I was scared, because I couldn’t do what I wanted or what I did before and I didn’t know what would happen to me in the future. I probably have thought of every bad scenario. I was prepared to accept everything. I just wanted to know what was wrong with me and what my future would look like, if I even had one. Acceptance helped me to be positive again. I think I have already changed, but I will change more in the future while I get to grips with my ‘new’ situation.

Hypermobility is chronic, it’ll haunt me for the rest of my life. It can’t be cured, but I can try to make my life more comfortable by doing exercises. Physiotherapy will help me to learn all my movements properly so I won’t strain my joints. I already try to walk, stand, sit and sleep without locking my knees and it makes me very tired. I understand that I’ll be limited from now on, in time and in movement. But I’m glad it’s something minor and I can still plan my future.

More in-depth posts about my experiences:

The five stages of grief

No gaming

Surprises

(Updated: 19-2-2012)