Finding stability in Ehlers-Danlos and hemophilia through physical therapy

Most mornings, before the day can get its hands on me, I do exercises for my spine.

They are not impressive. No one would film them. They are slow, deliberate movements on a mat, the kind of thing that looks like nothing and costs more than it looks. Bracing. Holding. Breathing where I’m supposed to breathe. It’s small, unglamorous work to remind my spine where it’s supposed to be.

Here’s a thing I’ve had to make peace with: I have Ehlers-Danlos syndrome (EDS), and my body doesn’t stabilize itself the way most bodies do.

Connective tissue is supposed to be the quiet infrastructure of the body. Ligaments and other supporting tissues hold everything in place without us ever having to think about it. Mine doesn’t do that reliably. So the stability other people receive without noticing is something I have to create. Deliberately. Every single day.

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Layer hemophilia B and von Willebrand disease underneath that, and you end up with a body that is both structurally unstable and prone to bruising and bleeding — a body that’s fragile in two different ways. My spine carries that burden, and my spine feels it.

The medical explanation comes with a handful of intimidating names, including scoliosis, multilevel grade 1 retrolisthesis, and moderate foraminal stenosis. In plain English, my spine curves where it shouldn’t, several vertebrae have shifted slightly out of alignment, and the openings where nerves leave my spine have narrowed. Connective tissue that was supposed to hold everything steady doesn’t.

When I finally had an MRI of my spine, I hoped someone would find a way to fix it. I don’t ask that anymore, as there is no fixing it. There is only tending to it.

The unglamorous gospel of physical therapy

That mind shift — from fix to tend — is the whole reason physical therapy finally works for me now. But I didn’t start there — I started with my laptop.

Virtual physical therapy came first because it was difficult to find a therapist who understood EDS. It was convenient, as it required only a screen, a set of exercises, and no commute. For many people, that accessibility is invaluable. Sometimes it’s the only option, and I would never dismiss that.

But I went looking, and while it took a while, I found a physical therapist about 30 minutes from home who understands both halves of me — the loose connective tissue and the bleeding disorder underneath it. Half an hour each way turns out to be a small price to pay for someone who sees the whole picture.

My physical therapist doesn’t talk about cures. We don’t talk about stretching. We talk about stabilization and building muscle and control around a structure that won’t hold itself, so that the structure has help. It’s a slow, repetitive process. Yet it’s the most honest medicine I’ve been given, because it tells the truth: This is maintenance, and maintenance never ends.

Some days I resent it. I want a body that doesn’t require a morning ritual just to function. But then I’ll skip a few days, either due to traveling, being busy, or simply being tired, and my body will send an invoice. The pain will escalate, and the exercises will quickly stop being optional.

So I do them — not because I’m disciplined, but because I’ve run the experiment enough times to know what happens when I don’t.

Maintenance isn’t failure

If you’re living with chronic pain and structural damage from your bleeding disorder, I want to leave you with the thing it took me years to grasp: Maintenance is not a failure to get better. It is getting better — the quiet, daily, unglamorous version that actually holds.

Among the lessons I’ve learned is the importance of building a team that includes a physical therapist who works with truth instead of so-called miracles, and a healthcare provider who believes you about pain and relief and won’t make you beg for help.

I don’t have a body that holds itself together, so every morning, I help hold it together myself with strength, patience, and intention. It’s a harder way to live, but I’ve come to see it for what it really is: It isn’t weakness, but rather strength, built on purpose.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.