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And yet, from the outside, most people wouldn’t even know I’m in pain. That’s the part they don’t see.
It Started at Birth
My journey with hEDS started long before I knew what it was. I was born with clubbed feet and had to wear a Denis-Browne bar as a baby and toddler — a metal bar that attached to special shoes to correct the way my feet turned in. Even after treatment, I'm still pigeon-toed. I’ve always been knock-kneed and have had hip issues for as long as I can remember.
Looking back, it all makes sense now. But as a child, I just knew I was always a little different.
Childhood Clues and Missed Diagnoses
Growing up, I was constantly injured. I rolled my ankles regularly — it seemed like every weekend I had a new sprain. Running the mile for P.E. was torture. I even had a doctor’s note excusing me, but one teacher made me run it anyway. I finished, with a sprained ankle, and then passed out from heat stroke. I was left in the nurse’s office until the end of the day.
(The famous "W-sit")
At the time, no one thought to ask why I kept getting hurt or why I struggled so much physically. I just got used to being the kid who needed to sit out or wear a brace.
The Car Accident That Changed Everything
When I was 18, I was rear-ended in a car accident. It wasn’t major, but afterward, I began waking up every day with a stiff, aching back. I went through physical therapy and saw a chiropractor, but the pain never really went away. I chalked it up to the accident and assumed it was just part of life now.
Motherhood: A Joy and a Wake-Up Call
At 23, I had my first child, and my body didn’t recover the way I thought it would. I experienced intense groin pain every time I stood or walked, but I didn’t say much. I figured that was normal after childbirth.
Five and a half years later, I got pregnant again. At just 20 weeks, I could barely roll out of bed. The pubic pain returned with a vengeance. At the time, we lived on a remote island in Alaska with no OBs — only general practitioners. They told me it was just “round ligament pain,” but I knew better. I saw a chiropractor three times a week who tried to adjust my pelvis. I made it through that pregnancy and delivery, but it was miserable. That was when I knew: two kids is enough.
Later, after moving to Alabama, I finally saw a proper OB who listened. She diagnosed me with Symphysis Pubis Dysfunction (SPD) — a condition that made total sense, considering how hEDS affects ligaments and soft tissue. I wasn’t crazy. My pain had a name.
Injuries That Didn’t Make Sense
Years later, I hurt my wrist watering plants with a watering can. That tiny, repetitive motion led to a pain I couldn’t shake. I wore a brace. I did six months of physical therapy. Nothing helped.
Eventually, I insisted on exploratory surgery. The doctor was skeptical. He said, “This kind of injury only happens to baseball players who slide into home plate.” But when I woke up, I was in a full arm cast — I had torn my TFCC (triangular fibrocartilage complex) after all.
Ten years later, I tore the same cartilage in the other wrist — this time just making my bed. The doctor didn’t believe me at first, until I explained what had happened to my right wrist. I had surgery again, and again — the tear was real.
Injuries That Don’t Seem Like a Big Deal — Until They Are
Sometimes, it’s not the big events that cause damage — it’s the most ordinary moments.
One day, I was getting groceries out of the car — something I’ve done a thousand times — and just twisted the wrong way. My knee dislocated. The pain was immediate, and it was weeks before it felt remotely stable again. I chalked it up to another unfortunate hEDS injury.
But six months later, it happened again.
Except this time?
I was simply climbing into bed. A slight shift, the wrong angle — and pop. Another dislocation, same knee.
And as if that wasn’t enough, that very same weekend, I ended up in emergency surgery for something completely unrelated: ovarian torsion.
The pain hit out of nowhere, and within hours, I was in the OR.
That weekend felt like my entire body turned on me — in different places, for different reasons, all at once. That’s hEDS. You never know which part of your body is going to betray you next.
A Pattern Emerges
Being a military spouse meant frequent moves, which made medical care fragmented. No one doctor had the full picture, and many didn’t seem to listen. I started feeling like a hypochondriac. But every time I insisted on tests, they found something. Every time.
Eventually, I started researching on my own. The more I learned about Ehlers-Danlos Syndrome, the more things clicked. The hypermobility. The chronic pain. The constant injuries. Even the “party tricks” I could do with my hands — bending them in unnatural ways — were signs. I brought it up to my doctor and physical therapist, and after years of questions and doubt, I was finally diagnosed with hEDS.
That diagnosis changed everything. It didn’t stop the pain, but it gave me clarity. And a plan.
The Hardest Season
By 2019, I had been referred to pain management. I didn’t like the idea of taking medication, but I was barely functioning. During my daughter’s senior year of high school, she came home for spring break, and I was in so much pain, I stayed in bed the entire week. I felt like I missed that time with her. I knew I had to do something.
Even with pain management, hEDS is a constant presence. Some days I can push through. Other days, I need to rest. Pain gets worse in the evenings, so I’ve learned to give my body grace. My soaker tub has become my best friend. And still, I hide the worst of it. I’ve gotten good at it. Too good.
The Roller Coaster That Pushed Me Too Far
In November 2022, I rode a roller coaster with my family — a new one with backward thrusters. As we hit the launch, a “stinger” of pain shot through my body. I told my family I just needed to walk it off, but after the next ride, I knew something was wrong.
Six months and a battle with insurance later, I finally had surgery, but due to complications with the anesthesia, the surgeon couldn’t complete it. I had to wait another six months for a proper ACDF spinal fusion (C4-C6). Recovery was long. Painful. And humbling.
Saying Goodbye to the “Forever Home”
This past year, we made a difficult but necessary decision: we moved out of the two-story home we had built as our “forever home.” As much as I loved it, the layout was working against me — the bedrooms were upstairs, and the laundry was downstairs. After surgery, carrying baskets up and down stairs was no longer an option. It was exhausting. It was dangerous.
We found a beautiful one-story home, and we’ve been here a few months now. It’s made a world of difference. I can move more freely. I can rest when I need to. I can live in a way that feels more manageable. It was the right choice — even if it meant letting go of a dream.
Watching for the Signs in My Children
Because hEDS is hereditary, both of my children show signs of it, too. Knowing what I know now, I’ve kept them active in dance and martial arts to help strengthen their muscles and core. That kind of movement and training wasn’t something I had access to growing up, and I hope it helps them build resilience and awareness earlier than I did.
(My son, comfortable at his dental appointment 😳)
Why I Share This
I don’t share this story for pity — I share it for awareness.
Because someone reading this might be the “clumsy” kid who always rolls their ankles. The mom who still hurts, years after delivery. The patient being told “it’s nothing” when you know it’s something.
You are not imagining things. Keep pushing. Keep asking questions. Keep advocating for yourself.
Life with hEDS isn’t easy, but with the right support, knowledge, and care, it can still be beautiful. It might just require changing the definition of "forever" and choosing what works over what was planned.
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