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By Shaun R.
I was really unsure about writing this, but I’ve noticed there’s not a lot of men telling their stories. If this helps anyone to feel a bit better then I suppose it was worth it. I also wanted to do my part for spreading awareness of EDS because, as we all know, the length of time it is taking people to be diagnosed is too long.
At the age of 26 I was finally diagnosed with hypermobile Ehlers-Danlos syndrome; it was both a relief and a shock. It had taken me five years of being misdiagnosed, told it was all in my head, and people not believing me in my work place before I finally got the diagnosis. I first started getting pain in my hips in 2013 during my time in the military; this gradually got worse and worse over the space of four years, leading to me being medically discharged from my job without any diagnosis.
The lack of diagnosis made getting any financial help impossible so I worked part-time through the pain while I continued to figure out why I was in so much pain. When my dad heard on the radio one night a lady speaking about EDS, he phoned me up the next morning and told me to listen back to it online saying, “She said people with it can have stretchy skin just like you.”
Listening to the lady speak was like my entire life suddenly started to make sense: the chronic joint pain, the stretchy skin, the terrible anxiety I had been suffering with during my time in the military, the depression I always found myself falling into throughout my life, the memory loss that now effects me daily, problems with my stomach, lack of sleep and of course the random dislocating of my joints the list goes on. If my dad hadn’t been listening to the radio that night I’d still be looking for the answer now.
Just four years ago I was the fittest guy on my military section; fast forward to now and I struggle stand for longer than ten minutes at a time, and can no longer work due to the amount of pain I’m in. As a man you want to be able to provide for the people you love, and not being able to do that anymore is the hardest part for me to deal with. Of course feeling this way just plays on the depression I already suffer with. I lost everything because of EDS: my job, my health, my income, and even had to move out of the house we were in. I’ve been lucky enough to have an amazing wife that has stood by me throughout the entire experience, and we must remember that we may be the ones carrying the disorder, but the people that love us go through all the ups and downs with us. Early this year I had to make the horrible decision to stop work completely because the pain had become too unpredictable for me, and that’s before I start to include all the other symptoms EDS causes.
One of the most frustrating parts about having EDS is how other people react to it. From the outside I look absolutely fine (other than when I’m using my crutches) so of course people expect more from me because they can’t see the pain I’m hiding. Sometimes it can be a very lonely and isolating condition to have, which is why it’s important to have at least one or two people in your life that completely understand. Having to cancel your plans for the day or cut the day short is a very common thing. People don’t understand with EDS you live life hour by hour rather than day by day. You can wake up feeling okay and then 20 minutes later be completely unable to walk.
Each day starts by checking over my body because I never know what part might have dislocated during the night and cause me problems that day. I then proceed through my day with caution, having to sit or lay down for long periods if I’ve had to stand at all. During the night I usually don’t sleep very well, probably three hours a night and even that can be broken up. I’ve woken up with dislocated ribs which feels like you’re having a heart attack, completely unable to take a breath in because your lungs are being poked. I’ve woken up with dislocated shoulders, knees, and hips. In 2019 I am having to move back in with my family for support and a fresh start with a new physiotherapist.
I will always be active in trying to find a way of dealing with this condition better and will never accept it as the be-all and end-all. In my spare time I run a music page on Facebook where I post videos of cover songs and some original material. I suppose the people that follow my page will not know the reasons why I now sit down to make a video and they certainly won’t see the crutches I’m holding onto that are out of the cameras shot. It’s not easy at all for me to make the videos; in fact it can take me a couple of weeks sometimes trying to find the right day that my body can cope with it, and even then if I have to restart my recording I have to rest for around an hour just to get my body ready to do another take. I do it because I love it and it’s my way of letting the frustration out. My page is “Shaun Ratcliffe Music” if anybody wishes to take a look, it may inspire someone to find a way of doing the thing they love most.
I hope this helps somebody out there and I hope it brings just that little bit more awareness.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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