Growing up with EDS

I have allowed my condition more and more visibility the older I get. Each year that goes by, it seems sillier to keep up appearances when it costs me so much and have no true benefit other than being treated a little less freakishly. I don’t talk about the difficult parts of growing up. I had very loving  parents and I don’t doubt for a second that had I given them the opportunity, they would have been there every step of the way. If only I had realized somewhere along the line what normal was.

EDS is a genetic condition that is inherited in an autosomal dominant pattern. It means that if one parent has it, there is a 50% chance that a child will inherit it. I grew up around bendy people that had asthma, weirs scars, stretchy skin, suffered from migraine headaches and had frequent falls, accidents and injuries. I also grew up with plenty of health problems of my own and between being at home sick, attending multiple doctors appointments and having loads of tests done and blood drawn regularly, being unwell somehow became the norm. I stopped telling.

The first joints I had issues with were MCP (knuckle) joints. Catching a large ball thrown quite hard in the wrong way dislocated three or four simultaneously. This was something I did on a weekly basis, which brought it to the attention of my netball coach. As finger dislocations are quite common in this sport, she put it back in and had me sit out the rest of the session with ice on it until my mother could pick me up. I didn’t like the attention and I didn’t like being benched. I didn’t like sitting on the sidelines watching whilst my hand hurt so much I couldn’t bare it. Being still was too difficult. I was seven. The next time I caught the ball wrong, I asked my best friend who was on the team with me to put it back in for me without telling anybody. She agreed and became my finger go-to person, sworn to secrecy. She never did tell and I love her for it to this day. I don’t really remember a time where my fingers didn’t dislocate. I didn’t know they were dislocating at the time, but they moved in ways they shouldn’t and I quickly learned that just biting on my finger and pulling with my teeth was a good way to get it go back in without needing to use my other hand, which I was using for other things usually.

I developed tendencies to swap hands. It infuriated both teachers and tennis coaches. When a finger or wrist wobbled, I swapped over the other hand and used my teeth to get the joint back in. When my left hand got tired, which it very quickly did, I used the right. I can still do most things with both hands except writing.

Finger dislocations set the trends. I had very bad ankle and knee problems aggravated by jogging every day and regular hiking trips until I was sixteen. Swimming taught me how to deal with recurrent shoulder instability and sad to say, I did try the lethal weapon approach too many times to reduce anterior shoulder dislocations by myself.

Most health problems came and went and I learned that all I had to do was get through it. I walked on a sprained and squishy ankles for days and miles, played netball, tennis and three musical instruments, did athletics, swimming, ballet, martial arts later on, yoga, weight lifting. I went to school, did well in all my subjects, I went to advanced classes, did well in all subjects there. I also got sick a lot, missed school a lot, spent more time  unable to push through than being able to push through. I was never well. I was just either able to pretend to be well or not. The pretending was not deliberate deception, but a simply misunderstanding. I thought everybody felt the way I did. I thought everybody lived with constant pain and fatigue. I thought everybody was putting on a happy face and carrying on and I was being childish and insolent when I complained. Nobody else ever really complained, now did they.

I still discover things that I thought was normal that actually isn’t. I wonder if I spoke up more, tried to explain more and fit in less, if life would have been easier. Life was very very difficult most of the time. I still don’t like the attention that visible problems bring. I don’t like having to bring any of this stuff to anybody else’s attention. But I also don’t like the pretence. I keep being told that most people would rather have the truth than the shiny truth. So I try to provide the facts. No dark or shiny truths. I was nineteen when I was diagnosed. It took about ten years for me to stop trying to make it not so. I still have times where I try to do too much, push through it because it’s either too depressing or sad or fallible not to try. I worry that trying to keep up the jousting in wow is like the time I ran a 10km race with wobbly joints, a bust ankle, ulcerated hands that didn’t appreciate the biting cold, struggling to breath the cold air that made my lungs tight. I got mild hypothermia and I remember the whole event in a dazed blur. I must have been about 11 or so and my god parents had taken me along for the day.

When you’re unwell, limits are very blurry. Some days, it’s good for me to get some exercise and go for a very short walk in the garden. Other days, it’s better to use the crutches and braces and prevent knees and ankles and hips from dislocating. Most days, it’s prudent to take the wheelchair to keep my shoulders, wrists and hands safe. I’m never sure where that safety line is. Pushing forwards is an admirable quality unless you’re balancing on the edge of a cliff.

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