EDS Means a Life Filled With Ankle Sprains
/By Crystal Lindell
I sprained my ankle again last week. If you have ever sprained your ankle, you know that swearing is more than warranted.
After stepping on a crack in our driveway, my stupid goddamn left foot just immediately rolled right under me. Within seconds, it was the size of a baseball.
I have spent the last few days doing RICE: Rest, Ice, Compression, Elevation. The bruises that developed have spread, making it look like I stepped in navy paint.
I wish I could say it was the first time I sprained my ankle, but I have hypermobile Ehlers Danlos Syndrome (EDS). As such, I’ve been spraining my ankle on a regular basis since high school. I even have my own personal stash of crutches and ankle wraps always at the ready.
The first time it happened, I was practicing a dance routine in socks on a wooden floor at my high school and – WHACK! — I hit the ground.
Another time, I tripped off the edge of a sidewalk.
I have also fallen down a flight of stairs; landed wrong during a jump sequence in my Jazzercise class; and face-planted while running into a Target store to shop.
Just because it happens a lot though, doesn’t mean it hurts any less. The day after it happened this time, I could barely get myself to the bathroom, as the pain radiated through my body into my chest. And that was with pain meds! It was hell.
Until recently, I always blamed myself for these falls. I thought I was just careless when I walked. I thought, somehow, I got distracted when I was going down steps. I figured that I should have worn better shoes. That I shouldn’t have been practicing a dance routine in socks.
I genuinely thought that I was an idiot.
I’ve also lost count of how many times someone accused me of spraining my ankle for attention. I don’t know how that would even work, but logistics don’t stop people from being cruel.
Anytime I needed crutches or a day off school or work to recover, I was also accused of being lazy, overdramatic or a wimp.
But then on March 15, 2018, I was diagnosed with hypermobile EDS by a doctor at the University of Wisconsin-Madison.
While he was evaluating me he said, “I bet you sprain your ankles a lot, huh?”
“Ummm. Yes! How did you know?”
“Well,” he said. “Your ankles bend way past the point where they should, so if they go just a little bit further, BAM! They just roll right under. And then you sprain them.”
It’s difficult to explain the emotions that come with such a revelation. I couldn’t believe there was finally a reason beyond “I’m bad at walking.”
It turns out, my ligaments just don’t work the way they are supposed to.
It wasn’t just ankle sprains that my EDS diagnosis shed light on. Another symptom of EDS is that I bruise much easier than other people.
It doesn’t bother me much, but it did really bother the doctor I saw at the women’s health clinic in grad school, years before my diagnosis. She was certain that my body being covered in bruises meant that I was being abused by my then-boyfriend. She tried multiple times to get me to open up to her and call the abuse hotline.
I most certainly was NOT being abused though. Not a single bruise had come from him. Thankfully, that doctor never involved the authorities without my consent.
Unfortunately, that’s not the case for many parents who are wrongly accused of abusing their undiagnosed EDS children for the same reason though, i.e. lots of bruises. It’s just one reason that refusing to diagnose kids with EDS or their genetically connected parents can have very dangerous consequences.
There’s a lot of discussion these days about whether or not it’s worth it to be diagnosed with EDS. A lot of doctors think it’s being over-diagnosed, claiming patients just want the label for attention or some other vague reason.
I’m in a different camp though. I think EDS is still exponentially under-diagnosed. There is value in understranding our bodies, and that’s what a diagnosis like EDS brings. After all, we can’t cope or treat things that we refuse to even name.
I suspect that many of my family members also have EDS. While most haven’t had the resources to get their own diagnosis, mine was enough for them to start understanding. It helped shed light on the things that their own bodies have always done. Many of them have come to realize that their injuries and pain were also not their fault.
Hypermobile EDS is a very real condition, with very real physical markers, and very real symptoms. It causes very real pain.
Patients have a right to know when they have it – just like they have a right to know that they have any other medical condition. Any doctor who believes otherwise shouldn’t be working in medicine.
As for my ankle, it’s slowly getting better. The swelling has gone down significantly, and I’m hoping that within the next couple days I’ll be able to fully walk on it. Now my goal is to just make it through the rest of 2026 without another sprain.
