Comorbidity

In medical school, students are taught: "When you hear hoofbeats, think horses, not zebras." It means look for common diagnoses first. Don't jump to the rare stuff.

It's good advice, in theory. The problem is what happens when the rare stuff is actually there and nobody looks for it because they've been trained not to.

Ehlers-Danlos syndrome (EDS) is considered rare. People who have it call themselves zebras — a reclamation of the very metaphor used to dismiss them. The Ehlers-Danlos Society adopted the zebra as its symbol for this reason. No zebra's stripes are identical, which also happens to describe the condition itself: it presents differently in almost everyone who has it.

I have hypermobile Ehlers-Danlos syndrome (hEDS). It's genetic. I've had it my entire life, but I wasn’t diagnosed until I was 48.

That's four decades of symptoms with no name. Four decades of doctors seeing the hoofprints, hearing the hoofbeats, and telling me I was a horse.

Here's what no one explains when you finally get a diagnosis like EDS: it doesn't come alone.

Connective tissue is everywhere. It's in your joints, your blood vessels, your gut, your skin, your organs. When the tissue itself is defective — when the collagen your body produces doesn't work the way it should — the problems aren't confined to one system. They cascade. And you can’t supplement your way out of it.

My connective tissue disorder comes with a condition called POTS — postural orthostatic tachycardia syndrome — where my heart rate spikes dangerously when I stand up. I've fainted. I've fallen. I've hit my head hard enough to see a dead friend in white light. POTS was diagnosed in 2019, six years before anyone thought to ask why my autonomic nervous system was malfunctioning.

It also comes with MCAS — mast cell activation syndrome — where the immune cells embedded in that faulty connective tissue misfire. Allergic-type reactions to foods, chemicals, temperature changes, stress. The body sounding alarms that aren't false, exactly, but aren't proportionate either.

And, for me, it also comes with lipedema — another connective tissue/ fat disorder that is genetic, progressive, and has nothing to do with diet or exercise. My legs have been large since I was eight years old. At least five generations of women in my family have had the same legs, the same look. I wasn't diagnosed until I found the condition myself, at 43, and drove hours to a specialist my own doctors had never heard of.

There's a term for this: comorbidities. Conditions that travel together. In the EDS world, the most common cluster is EDS, POTS, and MCAS — sometimes called "the trifecta" or "the triad." Add lipedema and EDS-caused chronic venous insufficiency (CVI) and you've got a body that is essentially miscommunicating with itself at every level: structure, circulation, immune response, fat storage.

Getting the first diagnosis felt like vindication. Getting the second felt like clarity. By the third and fourth, it started to feel like being buried, one acronym at a time, under the weight of everything that had been missed. And under the avalanche of memories of people making fun of my body and its capabilities, telling me I was lazy or fat or something else they thought was clever, helpful, or mean.

I didn’t know what any of these comorbidities were even though I was living with them every day of my entire life.

But here's the thing about comorbidities that no one tells you on the front end: they also explain things. That's their gift, if you can call it that.

Every weird symptom I'd been dismissed for, every "that's strange" a doctor muttered before moving on, every time I was told it was anxiety or hormones or my weight … all of it suddenly had a mechanism. The fainting wasn't anxiety. The chronic fatigue wasn't laziness. The pain wasn't from being fat. The legs weren't from eating too much.

It was all connected. It had always been connected. The body had been telling the truth for forty years. It just took that long for someone to listen in a language medicine would accept.

The overwhelm is real. I won't pretend otherwise. There are days when the acronyms stack up like debt — EDS, POTS, MCAS, CVI — and I think, I can't possibly manage all of this. There are days when I want just one body system to work without a caveat.

But I'd rather know. I'd rather have the names, even if there are too many of them, than go back to wandering in the diagnostic desert wondering what's wrong with me while being told: nothing.

If you're reading this and you've recently been diagnosed with one of these conditions, or you suspect you have one and can't get anyone to take you seriously, I urge you to look at the other possible comorbidities, too. Ask about them. Demand that your providers consider the possibility that your symptoms are not unrelated, that your body might be telling one story, not six.

The zebra doesn't have just one stripe.