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5 Things No One Told Me About Living With Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome can be an elusive condition, one that has so many variants and wide-ranging symptoms it can take years to get a diagnosis. I was only formally diagnosed with the hypermobile type last year, but that diagnosis managed to explain rather a lot about my body and the odd quirks I’ve been living with my whole life. Here are just a few of the things I have discovered about living with EDS that were never fully discussed — with a condition this varied, some things are bound to slip through the cracks.

1. I Will Never Hold a Pen the Right Way

Hypermobility is right there in the name of my condition — hEDS — so it stands to reason that it would have a big impact on my day to day life. I twist and roll my ankles painlessly multiple times every day as the joint is bendy and unstable. If I extend my arm the elbow bends backwards, like a bow.

I was never particularly aware of how these minor differences affected me until one day in school when I was around 7 years old, whereupon a teacher screamed at me for holding my pen incorrectly. Instead of holding it like my peers, pinching it between my thumb and forefinger, I rested my pen on the first knuckle of my middle finger, my thumb wrapping around, my pointer finger flat along the top of the pen. If this sounds complicated, well, it probably is. But because of my flexible joints, I have absolutely no control over a pen if I hold it the “normal” way. My fingertips bend backwards and have no real strength.

I thought about that moment for years afterwards — I was one of the brightest students in class and was always an eager learner, and I couldn’t understand why such a minor thing, not holding a pen in the way most children were taught, was such a damning thing. It was the first, though not the last time I remember feeling self-conscious about something my body did differently.

I’ve come to accept it now, that I’m doomed to a lifetime of smudging my handwriting and holding my pen wrong, not being able to swing on monkey bars and rolling my ankles when I’m off on a walk. Still, no amount of yelling could stop me from writing to my heart’s content.

2. Exercise Burns

I’ve always been active. The endorphins that come from a good workout, the sweat, the sense of accomplishment, all of these things coalesce into the perfect mental boost for me. I grew up dancing until my illnesses got too disruptive, and in adulthood I’ve taken to using free weights to strengthen my muscles and to stabilize my stretchy joints. There’s just one problem, though: it hurts.

I’ve always seemed to feel more pain post-workout than my peers. Once after a gym class that I took with my best friend, I couldn’t move for three days without wincing. It wasn’t until perusing online forums I had any idea that this was a common Ehlers-Danlos experience.

Anyone who works out is susceptible to a little bit of muscle ache afterwards, DOMS, or delayed onset muscle soreness is something all fitness enthusiasts contend with and something some people even relish in. When you have EDS, though, that muscular pain can be unbearable, and it might last for days. Most people are told to rest and recover when their muscles start to hurt, but when you have EDS, the usual advice is to push through the pain, because the impetus is to keep strengthening the muscles to better support your flexible joints. Of course, being careful and in control of your movements is even more important for EDS patients than those without fragile joints, so all exercise must be undertaken with utmost care.

I’ve learned to counter the ache with magnesium supplements and Epsom salt baths and careful use of a shiatsu massage pillow after seeking advice on forums. It helps, even if it doesn’t quite cure. The post-workout endorphins do their bit to help, too.

3. Just Standing Can Be Dangerous

Ehlers-Danlos can come with a whole heap of odd symptoms and comorbidities. One of the ones that affects me most potently is postural tachycardia syndrome (postural tachycardia syndrome (POTS) for short). POTS, for those not in the know, is when your heart rate increases abnormally when you stand up, causing fainting, dizziness and heart palpitations, among other things.

Usually, when a person stands up, some of their blood is automatically sent down to the stomach, hands and feet, and automatically their blood vessels constrict and their heart rate speeds up in order to stop blood pressure from dropping too low. When someone with POTS stands up, however, these autonomic processes don’t work properly, with too much blood leaving the heart and brain too quickly and the heart speeding up as a result.

This has led to me collapsing and fainting in all manner of odd and dangerous places — trains, buses, in the bath and perhaps most embarrassingly, just getting up from the toilet. Everyone gets a bit of a head rush from standing up too fast now and then, but if you risk dizziness and blackouts every time you stand, it can be a rather mighty inconvenience.

4. Medication Can Be Less Potent

Long before I was diagnosed with Ehlers-Danlos, I started experiencing debilitating gastric and digestive problems. Eventually, I couldn’t eat any food without throwing up, and was, for a time, put on a feeding tube. What I was experiencing was delayed gastric emptying, a common side effect of hEDS.

Now, you may be wondering what this has to do with meds. Well, for many years, I’ve had trouble finding medication that actually seems to help (with just about anything). From common analgesics like paracetamol to heavy-duty neuropathic medications for migraine and indeed the stomach pain which follows my delayed gastric emptying, nothing really seemed to quite take the edge off. It wasn’t until recently one of my doctors suggested why this might be. Delayed stomach emptying means that, much like food and drink, my medication stays in the stomach, being broken down by the acid there, before it can move further and be absorbed into the bloodstream, therefore making it less potent when it actually reaches the part of the body it is intended to soothe. Whilst this doesn’t mean medication doesn’t work for me at all, it does mean it is less effective for me than it might be for someone without these gastrointestinal issues, which frankly isn’t ideal when you have such a rich tapestry of health complications

5. Sex Can Be Clicky

TMI, consider this your warning.

My partner and I laugh a lot during sex — it’s an inherently funny, weird thing, and I’m a firm believer that the more you embrace the better it will be. But it took me an awfully long time to even be comfortable with intimacy. A lot of people with chronic illnesses will tell you that it impacts your self-esteem and your comfort with yourself. I spent many years bogged down with discomfort and self-hatred against my “broken” body, resentful of the pain and the myriad issues which made me feel like a hypochondriac who would never know peace. Even after my diagnoses and after spending a lot of time alone with my body, working on self-love, it took me a long time to get comfortable with the idea of letting anyone else in, letting someone else see and interact with my strange body. And then I found a partner who made me feel comfortable, and I decided I was ready to give intimacy another go.

So my hip got stuck, clicking out of place and hurting like all hell.

We both collapsed into peals of laughter. Sex for me is a lot of shifting positions, a lot of oh oops no I have to move my knee is gonna dislocate, wait, my arm is hyperextending let me move, oh crap my hip needs to click back into place, hold on, I’ll be right back with you.

It’s fun and silly and comfortable, even if my body is in discomfort.

There are a lot of things, both intimate and mundane, that no one ever really tells you about living with Ehlers-Danlos, but the beauty of the chronic illness community is being able to share these stories and know it’s not just you.

Getty image by efetova

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