23 Signs You Grew Up With Ehlers-Danlos Syndrome (EDS)

Living with Ehlers-Danlos Syndrome, especially from a young age, can shape your entire childhood and adolescence in ways others might not understand. From chronic joint pain to strange medical mysteries, here are 23 signs you likely grew up with EDS—whether you were diagnosed early or only figured it out years later.

1. You Were “Double-Jointed” — and Everyone Was Impressed

You could do party tricks with your fingers, elbows, or knees — hyperextending joints far beyond the norm — and people thought it was cool. Little did they know, it came with pain.

2. You Were Constantly Injured — Without Even Knowing How

Sprained ankles, subluxed shoulders, random bruises, and “mystery pains” were just part of your normal routine. No one else seemed to get hurt this often from walking across the room.

3. Your Teachers Thought You Were Faking Sick — A Lot

You missed school frequently due to unexplained fatigue, stomachaches, headaches, or pain. Adults sometimes assumed you were exaggerating.

4. You Were Always the Kid with the Ace Bandage or Brace

Ankle brace one week, wrist brace the next. Your home probably had a stash of support gear like other kids had sports trophies.

5. Physical Education (PE) Was a Nightmare

You couldn’t keep up in gym class, not because you weren’t trying, but because your body wouldn’t cooperate — whether from fatigue, instability, or pain.

6. Doctors Couldn’t Figure Out What Was “Wrong”

You bounced between specialists, got weird diagnoses (or none at all), and heard “it’s just growing pains” or “it’s all in your head” more times than you can count.

7. You Were Flexible — But It Didn’t Always Feel Good

You could touch your thumb to your wrist or bend backward easily, but stretching didn’t relieve the deep aches and muscle tightness you felt constantly.

8. You Bruised Like a Peach

A bump that wouldn’t faze anyone else turned into a dramatic bruise on your skin. People may have questioned if something more serious was going on.

9. You Had Digestive Problems Before Anyone Knew What “Gut Health” Was

Tummy aches, nausea, food intolerances, or being “a picky eater” — your digestive system just didn’t seem to work right.

10. Fatigue Hit You Like a Brick Wall — Regularly

You felt exhausted even after a full night’s sleep. Other kids seemed to bounce around, while you could barely make it through the day.

11. You Were Labeled as Clumsy — But It Was More Than That

You walked into walls, tripped over your own feet, and dropped things constantly. Coordination just wasn’t your strong suit.

12. “Growing Pains” Never Really Went Away

What others dismissed as temporary turned into chronic joint or muscle pain that followed you into adulthood.

13. You Couldn’t Sit Still — Because It Hurt

Sitting for too long made your joints stiff or sore. You had to fidget, stretch, or constantly shift positions just to stay comfortable.

14. Medical Professionals Often Didn’t Believe You

You learned early on how to advocate for yourself — because so many doctors brushed off your symptoms or couldn’t find a clear cause.

15. You Were Labeled as “Anxious” or “Dramatic”

When your body didn’t behave like everyone else’s, you were told it was psychological. You knew it wasn’t, but others weren’t convinced.

16. You Had Weird Skin Things No One Could Explain

Stretchy skin, fragile skin, easy scarring, or slow-healing wounds — your skin had its own set of quirks.

17. You Were Always Cold — Or Always Hot

Your body struggled to regulate temperature. You’d be freezing while others were sweating, or overheating without warning.

18. You Felt Older Than Your Age

While other kids worried about homework or crushes, you were managing symptoms, appointments, and invisible battles every day.

19. You Got Really Good at Smiling Through Pain

EDS taught you how to hide your discomfort, joke through dislocations, and keep going even when your body was screaming at you.

20. You Relied on “Good Days” to Catch Up on Life

When you felt okay, you did everything—schoolwork, socializing, chores—because you never knew when the next flare-up would hit.

21. You Became an Expert in Anatomy and Pain Management Young

You knew what a subluxation was before most kids could spell it. Ice packs, heat pads, braces, and medications were part of your everyday vocabulary.

22. You Were Often Misunderstood by Friends

Trying to explain why you couldn’t go out, join sports, or keep plans was hard. You looked “fine,” so they didn’t always understand.

23. You Finally Got Diagnosed — and It All Made Sense

Whether it took months or decades, hearing “Ehlers-Danlos Syndrome” put your entire childhood into perspective. You weren’t crazy. You weren’t weak. You had a name for your lived experience.

Living with EDS isn’t easy—but growing up with it taught you resilience, self-awareness, and how to listen to your body. You’re not alone, and your journey is valid.