Life with Ehlers-Danlos Syndrome

I rarely talk about how my Ehlers-Danlos Syndrome (EDS) affects my life, but today I’m giving you a peek behind the scenes. Because the EDS is with me 24/7, every day of my life. It was already there before I was born, and will be a part of me until I die.

EDS is no picnic. It has a serious impact on my life in every possible way. Still, I am lucky.

I’m lucky because I have relatively strong muscles, which is rare in people with EDS. My skin heals well, so I don’t have extreme scarring. I don’t have Chiari malformation, and only minimal mitral valve insufficiency.

I’m lucky because I only have the hypermobile type, which is the least likely to kill me. The bad news is, it’s the most disabling type. As such, it put me in a wheelchair. I can still walk a few steps at a time, indoors, on a very smooth surface. But if, on any given day, I walk too much, I will pay the price.

Yet, contrary to what most people might think, I don’t hate being a wheelchair user. My wheelchair gives me the freedom to go outside and live a relatively normal life. My wheelchair-dependence certainly is not the most disabling part of my EDS.

Life with Ehlers-Danlos is a pain

The endless fatigue and the constant pain are the most disabling parts of living with EDS.

Some days, I hardly notice the pain. It’s just there, like a background noise. You get used to it.

On other days, the cold, wet weather makes the pain almost unbearable. A paracetamol won’t do jack shit. My hyper-sensitive stomach ensures I can’t have NSAIDs. (And before you ask, no, proton-pump inhibitors don’t help.)

So I get to choose between nothing or opiates. Cool choice, eh? But here’s the problem with opiates. I have a genetic vulnerability for psychotic decompensation. So, let’s not do opiates. It’s not worth the risk.

So, no matter how much pain I’m in, there’s basically nothing I can do about it. That is no fun. Let me give you an example of how bad the pain can get. And the fatigue.

Chronic fatigue and brain fog

The other day, I got a new couch. I just needed to assemble it. But it was only eight (yup, 8!) nuts and bolts. I’m a strong little guy, so that should be no biggie, eh? Except that it cost me two entire days where I could hardly move at all.

Daan Katz - My Life with Ehlers-Danlos Syndrome
New couch. The cats approve.

Four days later, my arms still hurt. From simply assembling my new couch. I was still exhausted. But at least I was not feverish any more, so I took that as a win. My heart was also back to functioning more or less normally. And I could eat again.

My brain was still fried, though, and the brain fog prevented me from working on my novel. I could not concentrate on my writing for longer than just a couple of minutes at a time.

That is what life with Ehlers-Danlos Syndrome really looks like.

It’s not the party tricks. It’s not the wheelchair. It’s the other things. The things people can’t see.

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