EDS sucks but I’m still here and I refuse to give up

Trigger Warning: This page contains references to suicide

My story starts in 1982 in a small town called Kriel in South Africa. My now late mother was pregnant with me and was advised by doctors that I had an abnormally large head, and that I could have down syndrome. They suggested that it might be best for her to have an abortion. Well, I am here to tell my story, so I can only leave it up to your imagination what my parents’ response to the doctor’s suggestion was. My parents pre-warned my 3 siblings that I may be a “special baby”, but that I would be loved no matter how I came out. Early that December, I was born and looked the same as any other baby, with 10 fingers, 10 toes and a normal size head.

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All seemed fine until around the age of 5 when I started getting dislocations. I recall playing in the sand and having a finger lock in place, and on another occasion throwing a tennis ball and having my shoulder pop out of place. These were discovered to be dislocations and were happing quite frequently. I quickly became a regular in our doctor’s room, with finger, shoulder and hip dislocations plus all the other general sickness, cuts and stitches an 80’s child would have picked up. On one occasion, I went to our usual doctor for a dislocation and he was not available, so I saw one of his partners for an emergency appointment. He proceeded to put my joint back in place, and he asked a few questions. I showed him some of my party tricks, like being able to twist my arm around 360 degrees, sit on the floor and lie flat in between my legs, and I showed him my stretchy skin. It turns out this doctor was aware of EDS and had done a write up about it. He said he thought I have EDS and he referred me for further tests. I was sent to the University of Pretoria human genetics department where I was finally given the diagnosis of EDS. I was told to avoid contact sports, swimming and gymnastics, and other activities that would put a strain on my joints.

I tried to live as normally as possible, but I was always different. I was the weak kid in class that would get teased or bullied because of the things I couldn’t do that all the other kids could. I tried my best to keep up, even ignoring the doctor’s advice by playing sports to try to fit in. As I grew older, I started to build some muscle around my joints and the dislocations started to slow, although they never completely stopped. One of my friends that I went to high school with used to help me put my dislocated knee back in to place, not that he enjoyed doing it. We are still friends to this day, and I will always be grateful for that friendship.

In 2007, I hit a low in my life, I was feeling quite depressed, and I even tried to end it. Thankfully, my attempt failed, and I picked myself up- little did I know then that later that year I would meet my amazing wife. We got married in 2008 (I know that is quick, but when you know, you know) and we moved to the UK where we have built our life together. I studied mechanical engineering and became a precision CNC machinist. I have a great sense of pride in what I do, helping in the background making parts for all different sectors including F1 and even some medical parts. All the while our family grew, and we now have three wonderful children of whom I am incredibly proud of. The worry is still there that I have passed my EDS on to them, and I will be taking them to get tested. However, other than flexibility in some joints, there doesn’t seem to be an immediate medical concern.

For anyone viewing from the outside, life seemed to be going great for us. However, behind the façade, it is a whole different story. I kept a lot to myself as I didn’t want to be complaining all the time or seen to be seeking attention for my medical condition. My wife knows most of my problems, but I kept aches and pains quiet from her for a while too as I started to deteriorate.

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About a year ago, I reached out to a local EDS support group. To be honest, prior to that I had never spoken to anyone else that has EDS. I really didn’t know what I was searching for, maybe just someone else that could understand me and make me feel less alone. I got a response, but I never followed up on it. A few weeks ago, I reached a point where I couldn’t continue living with my pains anymore and I felt I needed to speak to a specialist here in the UK to get some sort of care. I have never really sought clarity on which one of the 13 types of EDS I have. I am assuming it is hypermobile EDS but for mine and my family’s sake, I needed to find out if it could be any of the other less common types. I also started joining a few EDS support groups on Facebook, and it really has made me feel less alone and validating hearing other people’s experiences and pains with this syndrome. The stories in some of the groups, however, have put doubts in my mind whether I too will be gaslighted and told nothing can be done, or if they will think I am some sort of hypochondriac.

The reason why I am seeking a specialist now is due to losing muscle strength, especially in my legs. They have been incredibly stiff and sore, as my muscles are firing constantly to keep my body from falling apart. This then causes muscle fatigue, which leads to severe leg cramps at night where my wife has to help me stand and keep me from falling or passing out from the pain.

Some of my other issues that I am suffering with are a possible hernia just above my belly button, sometimes bloating after I eat, and I suffer with acid reflux the moment I lie down to sleep. I wake up in the morning feeling like I have slept in a tumble dryer and my legs are still tired as they don’t relax. A few months ago, I used to be able to cycle to work with an electric bicycle but recently I’ve had to ask my wife to drop me off and pick me up. It’s quite the inconvenience for her at times, but she still does it and never complains. My work is trying to be accommodating, they let me sit down when I need to, and are possibly looking at moving me to a less hands on role that will not require me standing for hours on end.

Long days on my feet often cause veins to burst in my feet, which makes it even more painful to walk or stand. My feet and toes then turn all shades of black and blue. The same thing happens in my fingers when I bump them, grab something too tightly or pick up something too heavy for me. My finger joints are seizing up, and I experience trigger finger quite often. My wife is now the strongest person in the house, and I have to rely on her to open the tight lids of jars and bottles.

I want to be able to live a life where I can do things with my wife and children without feeling like I am failing them as a husband and father. I feel like I am always telling them that I’m too tired to play with them, or that I can’t do things because I risk injuring myself. I know this will never happen and this is the hand that I have been dealt, so I try to be a happy and positive person. EDS sucks but I’m still here and I refuse to give up.