Life With a Rare Disease: How the Little Things Add Up
Last updated: September 2023
I wrote about this topic 10 years ago, and while I forgot I had written about it, it's something I've been talking about lately as I've been struggling with this. I find it very telling!
Ehlers-Danlos syndrome (EDS), a group of rare diseases of the connective tissue, can be severe. I often get "impressive" injuries with hypermobile EDS: torn ligaments, dislocated joints, etc.
It feels like my whole body is breaking down
But as I get older, all of my ligaments are getting worse and worse, and the issues are usually less "impressive" but all over my body and a daily occurrence. At times it feels like my whole body is breaking down.
It can be:
- A finger hyperextending opening a soda can (leading to a need to immobilize it for a few days)
- An ankle partially dislocating while walking
- Muscle spasms, here and there
- A torn ligament in a shoulder reminding me of its existence if I use it too much
- A hip partially dislocating by shuffling on a bench
- Cervical (neck) spine instability giving me vertigo if I move my head a certain way
- ...the list goes on and on
It's just crazy the number of little things that are problematic that shouldn't be.
Nothing I do is painless
Nothing I do is painless. And that's sadly not a generalization. Not. A. Single. Thing. From holding my smartphone to sitting in a chair, from pouring myself some milk to typing.
Of course, that's not huge, intolerable pain. I'd even say it's nothing compared to an inflammation flare-up or to the acute pain of bigger injuries! But I don't remember what not dealing with constant pain feels like.
Here's a simple example: on a good day when my pain level is quite low, and I feel good, if I type on the computer for a long time while sitting, my shoulders, upper back, and hips can hurt enough for me to cry in pain. Yet it's nothing physically demanding, and I have an ergonomic setup! It appears to defy logic.
Repetition is my body's worst enemy
And it has nothing to do with having sore muscles after a good workout – that pain that makes us proud of having worked enough! It's about inflammation, microscopic ligament tears, swelling, and joint pain that can last for days – if there isn't a serious injury on top!
Over the years, I developed ways to minimize the risk of injury and pain, so much so that I drew a blank when an occupational therapist asked me what I did to manage these issues! I'm used to everything in my life being adapted to my needs. But I definitely notice what I usually do when I suddenly don't!
For example, I was in much more pain while staying at a rental cottage a few years back! I got tendonitis just from being in a place that wasn't made for me, with a low toilet, low sofa, stairs, and so on!
The struggle is hard
I say I've been struggling with this, as lately it's been harder; I can't explain why – I just wish I could do something without it having to be adapted, without it causing pain.
But I don't usually notice all these smaller pains and limits. I'm used to it; it's just how my life is!
How do you feel about your support system?