My Journey: Ehlers-Danlos Syndrome & Chiari Malformation

The Brain That Moved House (and Other Chronic Illness Shenanigans)

By Antonia at Unremarkable Me

I wouldn’t call myself an expert—but I’ve read, researched, interrogated specialists, double-checked studies, and fact-checked like a woman possessed. Because, frankly, I am. in away, that is—by a desperate, determined need to understand. Chaos is less terrifying when it comes with a manual. Give me the facts. Show me my options. I want the can-do’s, the can’t-do’s, and all the “technically maybes” in between.

At one point, someone even accused me of being obsessive—which, let me tell you, stung more than it should have. But here’s the thing: I don’t obsess. I prepare. I don’t roll over. I’m not submitting quietly to this reality—I’m showing up, fists metaphorically swinging. Learning what’s happening in my body doesn’t make me dramatic—it makes me capable. (That being said, I would make an excellent doomsday prepper.)

Knowledge is the lifeboat I cling to when Chiari Malformation and Ehlers-Danlos Syndrome (EDS) are howling at the windows.

When Your Brain Wants to Relocate: Chiari Malformation

Let’s start with Chiari Malformation—because who doesn’t love a story that opens with your brain trying to escape?

Despite its operatic name, Chiari Malformation occurs when the lower part of the brain (the cerebellum) herniates downward into the spinal canal. Essentially, the brain decides the skull isn’t giving it enough room and tries to squat somewhere else entirely. This migration compresses the brainstem and disrupts cerebrospinal fluid flow, which—as it turns out—is kind of important.

The result? Headaches that feel like someone is playing the drums inside your skull using flaming drumsticks. Sneezing, coughing, laughing too hard? All high-risk activities. There are days I genuinely fear a good giggle. Wrap your head around that—my own laughter is a health hazard. Oh, the irony.

Then there’s dizziness, blurred vision, balance issues, tinnitus, and cognitive hiccups. I sometimes walk into a room and forget why I’m there. Classic sitcom material—except it’s happening twelve times a day, including mid-conversation. Which can get… awkward.

More on Chiari Malformation from NHS UK

EDS: The Floppy Sequel No One Asked For

And then, just when things couldn’t get weirder—enter Ehlers-Danlos Syndrome. This genetic connective tissue disorder makes my body about as structurally sound as a badly assembled IKEA bookshelf. Collagen—meant to hold everything together—acts more like a vague suggestion.

My joints? Think of them as overly dramatic actors. They dislocate at the drop of a hat. My skin bruises like I’ve just lost a duel. My digestive system has its own agenda. And then there’s dysautonomia—a nervous system plot twist that throws in fainting spells, blood pressure plummets, and a thermostat that swings from Antarctic to inferno with no warning.

It’s like my body is hosting a never-ending, glitchy tech demo on how not to function.

EDS overview from Ehlers-Danlos Support UK

When Both Conditions Tag-Team You

Here’s the kicker—EDS and Chiari don’t just coexist. They collude. EDS can weaken the connective tissue at the base of the skull and spine, making it easier for the brain to herniate. One condition literally makes room for the other. It’s like inviting chaos over for tea and discovering it brought a plus one.

The result? A neck about as stable as a paper straw and spinal fluid that refuses to flow properly. Neurological symptoms? Like someone leaned on the “glitch” button of my existence and forgot to let go.

What Daily Life Actually Looks Like

Forget dramatic hospital montages—this is the quietly heroic, occasionally absurd day-to-day reality:

Headaches That Could End Wars

Some days, the pressure is so intense I can hear my heartbeat behind my eyes. It’s not just pain—it’s a presence. An uninvited houseguest stomping around upstairs with zero regard for personal space.

A Nervous System With Commitment Issues

My autonomic nervous system acts like it's in beta testing. One minute I’m freezing, the next I’m melting. Stairs can feel like Everest. Standing still too long? Roll the dice on fainting. Public faints? I’ve had a few. There’s always a story.

Joints With Wanderlust

I can relocate my own joints—not for fun, not to show off, but because I have to. Knees, shoulders, even my thumbs—playing musical chairs daily. Bonus points if they scream while doing it.

Fatigue That Hits Bone-Deep

This isn’t “I could use a nap” tired. It’s “I’m made of cement and bad decisions” tired. Some days, brushing my hair feels like a full workout. (Which is why I now have dreadlocks. Honestly? Game changer.)

Gut, the Drama Queen

Digestion is a fickle friend. Sometimes food is fuel. Other times it’s a betrayal of Shakespearean proportions. Gastroparesis, reflux, nausea—they don’t knock. They barge in wearing sequins and causing chaos.

Why I’m Telling You This

For years, I made it my mission to blend in. To look “fine.” To stay invisible. But when I started writing, speaking out, and yes—even oversharing—everything changed.

With every article I’ve published and song I’ve released, I’ve chipped away at the fear. And in its place, something grew: connection. People reached out. They said, “Me too.”

Suddenly, I wasn’t alone in the dark anymore.

If You Love Someone with Chronic Illness…

Show up. Not just on the tidy days. Not just when it’s visible or comes with a diagnosis code. Show up with patience, curiosity, and an open mind. Understand that sometimes, managing to shower is the equivalent of climbing Kilimanjaro in flip-flops.

Because here’s the truth: support doesn’t need to be poetic. Sometimes it’s just making tea, asking questions, or sitting quietly when the words run out.

And if you’re the one living it—navigating a body that changes the rules daily, managing a schedule that includes both dreams and doctor’s appointments—this is for you:

You are not weak because you need rest.You are not failing because your body needs instructions it never came with.You are not defined by the days that knock you sideways.

You are learning to build a life out of driftwood and lightning storms—and still finding ways to laugh. That’s not survival. That’s alchemy.

So here’s to the ones rewriting the manual in real time.To the ones who get up anyway.To the ones still here—messy, magnificent, and unreasonably brave.

💙Antonia