Ehlers Danlos Syndrome: Hypermobility Type doesn’t really roll off the tongue…

It’s Ehlers Danlos Syndrome (EDS) Awareness Month. I haven’t written about EDS. I haven’t really thought about it that much. I haven’t been as aware as I should have been.

Perhaps it’s because I feel like a bit of a fraud talking about it. I don’t feel like it’s about me. I’m ok. I’m not a “proper” Ehlers Danlos Syndrome person.

I was diagnosed with EDS last year. It was a throw-away diagnosis. I’m hypermobile.

So hypermobile that I ended up in a wheelchair last year. I couldn’t walk. My hips gave up on me. It was a winter of pain and isolation.

So hypermobile that my osteopath who I visit only when the pain is unbearable, said that the only other client she’d ever seen with a back like mine, had been in a severe car accident. She wondered if I could have broken my spine at some point and not noticed, and maybe that would explain its looseness.

My consultant said that he didn’t really believe in Hypermobility as a syndrome. He said that officially I have EDS Hypermobility type, but that that’s not really important.

I liked him, but found it hard to reconcile having it or not having it.

I’d actually only finally pushed for a diagnosis, not because of the wheelchair, not because of the hips, but because I’m a writer and writing with a pen hurt.

I love to write. I love to draw. I love to sit and make origami flowers. And all these things hurt me.

I asked him for advice. He told me to stop writing with a pen.

It may seem callous, but that was the answer. This is who I am. This is where I’m at. The pain is not going to go away or lessen. If something hurts, I can do it, or not do it. Those are my choices.

This is not my expert topic. I know so little. His advice to stretch and build muscle has helped. My walking is better. I’m stronger.

He told me I shouldn’t run, I should swim. There was useful, practical advice. But I know there’s more.

I’ve read the symptom lists of my type of EDS, and I have them. I’m not just the pain in my joints, I’m the other bits too.

At least I get velvety soft skin out of it. It’s a shame it’s always covered in bruises.

I decided to test the bruising thing once. Just to see if I was clumsy or actually bruise easily. I poked myself in the leg with a pencil in a pattern. Not hard enough to hurt. Then got distracted by something shiny, the way I do.

A couple of days later someone asked if I had some kind of exotic disease. There was the pattern of spots in bruise-form.

This post isn’t about making you more aware, it’s about me and my lack of awareness about what I am and what that will mean for the future.

I still remember saying to my first boyfriend, “You know how something always hurts?” And him shaking his head.

I have always been in pain. Pain is normal. Pain is background noise.

I’m still finding out what it means to understand that there is a reason behind the pain.

I’ve put much more effort into understanding who I am, than into dealing with the physicality of me.

So for Ehlers Danlos Syndrome Awareness Month, I am saying that I am here. And I think I am finally ready to listen.

Published by Rhi

17 thoughts on “Ehlers Danlos Syndrome: Hypermobility Type doesn’t really roll off the tongue…”

  2. It’s not really a diagnosis anyone wants to deal with. Most of us ignore it until it smacks us in the face with a shovel.
    Take it at your pace. You certainly sounds like you’re doing everything right. Oooooh and pens… these are amazing https://www.amazon.co.uk/s/?ie=UTF8&keywords=penagain&tag=hydrukspg-21&index=aps&hvadid=25387517847&hvpos=1t1&hvexid=&hvnetw=g&hvrand=9316508126695142784&hvpone=&hvptwo=&hvqmt=b&hvdev=m&ref=pd_sl_4lic891t1k_b

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  3. Wow. I can relate to this on such a psychological level. I was diagnosed hypermobile, and that’s the only label any of my doctors want to put on it. I think I’ve got EDS, but no one believes me, and every test I’ve had done has shown nothing wrong with me (but at 22 you should be in constant pain, right?). I had to give up my dream career at the age of twenty because I couldn’t handle the physical aspects anymore.

    Thank you for putting this into words. I feel less alone now.

    Good luck with your search to understand!

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  4. I know I am hypermobile, as is my son. When giving medical histories, I’ve never had a doctor bat an eyelid at my description of ‘undiagnosed EDS’, they accept it and move on, knowing a diagnosis won’t fix anything, and the awareness is the key.

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  5. I’m 57 and just learned I’m hypermobile by my new pain Dr…I totally understand feeling like pain is normal and thinking everyone else must have it too. I always thought everyone made it look easier to live. In the last 10 yrs the pain has gotten worse. I was constantly diagnosed with fibromyalgia. My new Dr actually said I have EDS. I had to find out about hypermobility on my own. So far he’s trying to treat the pain with meds. I feel like a guinea pig. I’m also trying meditation.

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  6. I’m here too, having been diagnosed with EDS-HT last year, at the age of 41. I’ve also become aware that it is highly likely that I have Asperger’s (my doctor said “Oh gosh, yes!”) and am waiting for an official assessment.
    Like you, I’ve been focussed on learning who I am from a non-physical perspective but since my mobility declined and I had to source my own solutions, the emphasis has shifted to the physical. Since diagnosis, it has been a torrent of appointments, information, braces and splints… but experiencing a cascade of worsening symptoms in ignorance of the cause was worse. The overload caused by ignorance (before the pieces and accompanying diagnoses fell into place) was worse than this stream of focussed, applicable, informative input-load. Even the knowledge that I am now classified as disabled brings a strange relief. I hadn’t realised that my previous struggles weren’t ‘normal’.

    I just wanted to say, I’m right there with you. Best wishes, extra Spoons and did you know that a collection of Zebras is called a ‘dazzle’? We EDS ‘medical zebras’ must indeed shine bright!

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  7. Same here, I got diagnosed before my exams. Actually one week before my college exams. Too weak to write.The feeling of constantly trying to hold my body together and just being knocked or distracted for a second, leading to another dislocation. Fun, right? Tbh, I acknowledged it just to push it from my mind. I was depressed for a while, people didn’t want to be friends with the kid on painkillers who at best could only walk on crutches. My boyfriend’s mother (an unpleasant woman at the best of times) wanted him to break up with me. I was actually so depressed that I told him I was sorry for being so weak and pathetic and he didn’t have to stay with me. He told me that I was an idiot, the fact I saw it as a barrier annoyed him not that I was physically weak.
    I have had so many therapies and painkillers (turns out I am allergic to most), and while I am thankful for the NHS support, he was the best. I stopped using it as an excuse and pushed back. I can walk again, I can write (if only for half an hour at a time), I can draw (in short sessions) and I even do the things I shouldn’t (trampolining 😛 ). I ditched the pain meds btw, I hate the reactions I had.
    It gets so much better, but that was when I realised it was just who I was and not a barrier anymore. I acknowledge and listen to the doctors, but I have my own mind on it. The constant pain, it won’t ever go I think, but I have always lived with it and I be damned if I give in to it. Exercise regularly is actually the best thing for it, I discovered (and other people agree). Muscle building, any kind. Swimming, pilates, yoga, or plain weight lifting (like me). Maybe one day I can say I don’t feel any pain though? Unlikely, I don’t really believe it but one can hope right?

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    1. That’s fantastic. I’ve spent a lot of time building muscle in the past year and it’s helped so much. I still overdo things. There’s still pain, and I still regularly hurt my joints, but there’s a real joy in knowing that you can do things.

      Accepting it is such a healing thing.

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  8. After looking at my back, my chiro asked if I was thrown from a horse. He doesn’t believe in EDS. Good thing my geneticist does. The best 2 recommendations he gave me was to take Vitamin D and invest in a tens machine. Helped, but you know…never really feels better.

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    1. I’ve just discovered the real joy of KT Tape used as and when. It’s reduced my daily pain a lot. Really glad you have someone who has been able to offer sensible, practical help.

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      1. I’ve heard about the tape. The only problem is that I also have Mast Cell Activation Syndrome, which includes a tape allergy:(

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        1. Oh no! What a shame. That’s really unfair. Tens machines are pretty magical. But there’s such a lot of just accepting the pain.

          At least now I know what it is and can expect it, I can plan some recovery time.

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