The Mighty Logo

The More I Learn About My hEDS, the More I Realize I Don't Understand

The most helpful emails in health
Browse our free newsletters

Earlier this year, a close friend said she didn’t understand my pain, and it stung. It hurt a lot. One of the people in this world I never thought I’d have to explain my pain to.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

And yet, here I am, six months into a recovery period of my shoulder subluxing 10+ times a day, suddenly realizing that I don’t understand my pain all the time either. It hit me that it was more than a valid comment from my friend. It’s hard enough for me to even get my head around, and that’s with all of my history, etc. taken into account!

Over the past few months, there have been several “Aha!!” lightbulb moments for me. Mainly due to seeing a hEDS (hypermobile Ehlers-Danlos syndrome) specialist, a lot to do with being more mindful and a good bit of input from support groups (thank you social media!!).


So, what have I learned?

First, I get two types of anxiety. The utter feelings of dread are down to mental health issues. I kind of recognized the other anxiety felt different, but I didn’t really know why. It was only when I was waiting for my therapy appointment that I realized I suddenly felt very anxious, and just generally not quite right – a bit fight-or-flight. It confused me. I never get anxious before therapy – yes, it is bloody difficult a lot of the time, but it doesn’t make me anxious, and it threw me big time. I started to do a body scan, and boom, there it was. My heart was racing, palpitations too. Then I felt the heat of the day (in the UK most buildings aren’t built for the heat of summer!), then I realized I also felt dehydrated. This was not mental health anxiety, this was dysautonomia-related.

Dysautonomia and orthostatic intolerance are relatively new to me, but so very common with my fellow hEDS counterparts. Us “bendies” have problems with all the stuff “normal” bodies do automatically – temperature, heart rate, sweating, diarrhea. Sounds glamorous, huh?

I did as I’d been advised and downed a liter of water with added electrolytes, and within 30 minutes all symptoms had pretty much been washed away. Phew.

So, the second thing I’ve learned is that knowledge and mindfulness are key to managing my condition. I have since realized I have these episodes so much more than I thought, and more so if I don’t drink about three liters a day.

We then move onto the next revelation I had. Now this one may sound silly… But I realized that, just because a doctor/nurse/physiotherapist, etc. (however high up they may be) says that something cannot happen – in my case, my rib subluxing – does not mean they are correct!!

I know my body so well now. I would go as far as saying that I am pretty good at telling the difference between subluxation pain (normally muscle and ligament), muscle spasms, impingement pain and tendons slipping over a joint. It becomes more than frustrating when a medical professional says, “That’s not possible” when I am living proof that it is!

The problem is having medical evidence. A subluxation generally means that a joint has dislocated partially – for me, they mostly slip straight back in. This means they do not show up on an x-ray. So then comes the “It’s not dislocated” followed by “Arghhhhhh, I know it’s not!” from me.

It leaves me feeling stuck between a rock and a hard place, because how can you get the right help to heal, or the right physiotherapy exercises, if they won’t accept it was even a problem in the first place? The answer for me so far has been to pay (a lot!) of money to see hEDS specialist doctors and physiotherapists in London.

In preparing for a pain clinic appointment, I then realized I can just about, with pacing, medication, massage and KT tape, manage the day-to-day chronic pain and fatigue. But when you add in acute pain from a subluxation, my brain goes haywire and all of a sudden I’m coping with neither, which is hardly surprising I guess.

I’m trying to be kinder to myself – I mean really trying. I sat back yesterday and took in all these epiphanies, and out of my mouth popped, “I don’t understand my pain either.”

Don’t get me wrong – of course sometimes I do understand it. There’s the times I push myself too hard, or the times I fall, or the times when I’ve tried to put on a coat myself… They all make sense. I have that all figured out, albeit, often after the event!

It’s the random subluxation of my knee on the school run, or the waking up with a slipping rib, or nerve pain all down one side of my face that I don’t understand. It’s a bit like someone creeps up from behind, slaps me round the face and runs off. It hits me so fast that I’ve no idea what is going on, or how long this pain I can’t cope with is going to last, or if I will be like this forever.

And that’s when I saw it. 18 years post diagnosis, and I’m still learning how hEDS affects me. It can change hourly, daily, weekly, monthly, yearly. Often, every decline never fully recovers, and each requires its own grieving period of the things I wanted to do in my life, followed by learning to love the things I can do with my life. No two patients are the same, nor their difficulties.

Maybe I just needed to realize that I don’t always understand either, and that very fact is more than OK.

Thinkstock photo via svetikova.

Originally published: June 26, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home