How I Found Out I Had EDS + Newest Resource Launched is Live
One crash, two surgeries, a family fallout, and the chronic truth no doctor saw coming. What drove me to do all this.
People always ask me, “How do you have time to write all this?”
The answer? Well, it’s not because I’m exceptionally organized or sipping zebra-branded electrolyte cocktails.
It’s because I lost almost everything else.
I don’t have a 9-to-5 job anymore. I don’t have regular family dinners or holiday group texts. I don’t get invited to girls’ weekends or team planning meetings.
What I do have is time—time I didn’t choose—carved out by chronic illness, surgical trauma, and estrangement from people I once considered permanent.
So I use it. I write. I build. I turn all the wreckage into purpose—one article, one resource, one post at a time.
Because telling the truth about life with EDS and chronic illness is what keeps me sane. It’s my form of self-motivated therapy.
And creating something out of all of this pain? That’s the closest thing to healing I’ve got.
How I Found Out I Had EDS
I didn’t grow up thinking I was sick. I grew up thinking I was strong. Battling generational trauma I just assumed we all experienced.
By adulthood, I had the kind of life that looked good on paper: career in communications, a daughter in high school sports, a husband I loved, a house in the D.C. suburbs. Sure, I had weird symptoms—joint pain, fatigue, dizzy spells—but I blamed them on stress, hormones, maybe bad shoes. I adjusted. That’s what working moms do.
Then one morning, I passed out while driving to work.
I rear-ended a car hard enough to crumple metal. I thought I’d just fallen asleep at the wheel. Turns out, I’d been blacking out.
I went to physical therapy for what I assumed was whiplash. The PT felt under my skull, got quiet, and told me to go to the ER. The ER told me to go home, drink some wine, and “get over it.”
That was the moment the illusion cracked and I learned about being dismissed by medical providers.
“You have hypermobile Ehlers-Danlos Syndrome.”
It took three more years, a lot of doctors, and more medical gaslighting than I thought possible to finally hear those words.
Then came POTS. Then MCAS. Then the alphabet soup of other comorbidities. Eventually I found out my brain was falling through the bottom of my skull (Chiari malformation) and my neck was too unstable to hold my head up (CCI and AAI). I needed neurosurgery to fuse my cervical spine to be able to hold up my skull (that my doctor called a pumpkin on a spike for some strange reason).
Two years later, while I was asleep, the cervical fusion screws backed out. No trauma. Just bad collagen. I had to go through it all again—another fusion, another recovery.
And while my body was collapsing, so had the rest of my life.
What They Didn’t Say at Discharge
I lost my job—my high-level role in D.C. communications. I lost our home—because disability doesn’t pay D.C. prices. I had to move to a smaller town fast, which meant leaving my daughter for the last month of her high school senior year.
My family didn’t ask how the surgery went. They didn’t call. They didn’t check in. Not then, not six years later.
I don’t say that for pity—I say it because that silence taught me something.
In the absence of care, I chose connection.
I chose to surround myself with people who show up. Who listen. Who believe.
It was the hardest decision I’ve ever made—and I still hold space for the hope that one day, my daughter will understand that Mom never left.
Mom was just trying to survive. And she and I are mending our relationship gently now.
What I Found Instead
My husband stayed. Every appointment, every ER visit, every day I couldn’t sit up without help, he was there. That’s how I learned what real love looks like—not the fairytale kind, but the “hold your puke bag and still call you beautiful” kind.
And then came the strangers—fellow patients, people online, folks across the world or down the block—zebras who said, “Me too.” They became my community. My lifeline. My herd. I became a zebra.
So I used what I had left: my voice. My words. My new altered version of ‘work.’
I started writing. Built a newsletter I could no longer fund. Built a living library app-style community collaborative database at EDS411 to help others find answers faster (and have a place to store the repository of thousands of resources I had researched over the years). Then launched Zebras Underground to talk about what no one else would- the real truths of this condition. I couldn’t save my old life. But I could help someone else save theirs.
Because no one should have to lose everything to get a damn diagnosis.
My Latest Effort is a Joint One, With You In Mind
Big news, ZU fam—I’ve finally taken the plunge and launched EDS Joint Effort at www.edsjointeffort.com, a passion project that’s been quietly brewing behind the scenes for way too long. This isn’t just another awareness site—it’s a full-on one-stop-shop with a mission to reduce the time it takes to get diagnosed, connect patients with real answers, and give hypermobile humans the resources we all wish we had years ago. Think of it as the scrappy, nerdy bookworm sidekick of Zebra Underground—part educational hub, part community effort, and 100% built from lived experience. We’re talking vetted medical info, practical tools, provider insight, and a few spicy truths about navigating broken systems. It’s live. It’s loud. And it’s about time. Take the quiz to get content guidance to where you are in the journey and dial down the overwhelm of the EDS research project to save your own life.
Connection Is How We Rise
This illness broke my body.
But it built my purpose.
If you’re reading this and still searching—still doubted, dismissed, or afraid—you’re not alone.
You’re one of us.
And we don’t care how long it took you to get here. We’re just glad you found us.
Because in a world that keeps breaking us down, connection is how we rise and I believe is the cure for incurable chronic illness.
Want more stories like this?
Subscribe to Zebras Underground for bold truths, raw stories, and survival strategies from the chronic illness front lines.
Explore the EDS411 Living Library for medically vetted resources and community-built knowledge. Save your faves and upvote the best ones.
Check out the new site at EDS Joint Effort for resources that will blow your brain away.
Join us here in the Connective Circle by becoming a paid subscriber to ZU for workshops, events, and support made by zebras, for zebras.
Yes, how I found out I had EDS changed everything.
But finding you? That’s what saved it.
Thank you to all the subscribers whether your on a free or paid version. Thank you for the outpour of support and reader response that tells me you are aligned with my thinking that chronic illness is a real bitch, but it doesn’t have to turn you into one.