Remember when you were the kid who could bend your thumb to your wrist while your friends stared in awe? Or the one constantly sent home from school with “mystery bruises” that looked like you’d been in a fight?
I was that kid – the “clumsy one” who sprained ankles climbing stairs and got called “dramatic” when my knees popped out during dodgeball. For years, I thought my body was just weird.
Then I discovered Ehlers-Danlos syndrome, and suddenly my childhood made sense. That ache after tying shoes? The unexplained stretch marks at 10 years old? These weren’t random mishaps – they were clues your body was whispering.
If you’ve ever wondered why growing up felt like navigating a minefield in flip-flops, you might’ve had hypermobile Ehlers-Danlos syndrome (hEDS) all along.
That tiny bump against a desk left plum-sized bruises, and by 12, you had silvery unexplained stretch marks on hips or back – way before any growth spurts. My mom thought I was lying about “not falling,” but fragile skin doesn’t lie.
Slow Healing and Fragile Skin
Scrapes took weeks to heal, leaving weird “cigarette paper” scars. Paper cuts turned into gaping wounds, and dental work left mouth sores for months. I once got stitches for a paper cut – yes, really.
Frequent Sprains Doing Everyday Activities
Tripping over flat sidewalks, rolling ankles on level floors, or spraining wrists while opening juice boxes. Your “accident-prone” reputation wasn’t clumsiness – it was unstable joints begging for support.
Clumsy or Accident-Prone Reputation
Bullies called you “butterfingers” when you dropped lunch trays. Teachers sighed when you knocked over chairs. Little did they know, hypermobile Ehlers-Danlos syndrome makes proprioception (knowing where your body is) like playing GPS with no signal.
TMJ Issues: Jaw pain or difficulties opening your mouth
Chewing gum felt like running a marathon. Dentist appointments were torture because your TMJ (temporomandibular joint) dislocated during cleanings. I avoided hard foods for years, surviving on mashed potatoes and smoothies.
Fatigue Out of Proportion to Activity Level
After recess, you needed naps while friends played tag. Parents thought you were lazy, but moving with Ehlers-Danlos syndrome is like running marathon in sand – invisible effort that drains you fast.
Digestive Troubles as a Family “Mystery”
Stomach aches made you miss school trips. Doctors blamed “stress” while your family whispered about “sensitive stomachs.” Now we know Mast Cell Activation Syndrome (MCAS) often overlaps with EDS, turning pizza parties into ER visits.
POTS Symptoms: Dizziness when standing, fainting spells
Standing up too fast in line? World goes black. Skipping lunch meant collapsing in math class. Your Postural Orthostatic Tachycardia Syndrome (POTS) made you the “faint kid,” but it’s actually blood circulation chaos common in EDS.
MCAS Symptoms: Allergic reactions to seemingly everything
Eating an apple? Hives. New laundry soap? Swelling lips. Classmates thought you were “allergic to life.” Really, your overactive mast cells (part of Mast Cell Activation Syndrome) were throwing emergency alarms.
Poor Wound Healing; Scars That Don’t Fade Normally
Scars stretched into thick keloids or stayed shiny for years. My knee scab from fourth grade? Still visible today. Collagen defects mean your body builds “shoddy construction” instead of strong repairs.
Recurring Headaches or Migraines
Reading textbooks triggered blinding headaches while classmates aced pop quizzes. Teachers accused you of skipping work, but cervical instability from EDS turns book reports into torture.
Clicking, Popping, or “Slipping” Joints
Walking sounded like cracking knuckles. Sitting cross-legged gave instant relief as subluxated hips “slotted back.” That weird slipping rib syndrome? Where ribs pop out and stab you with every breath? Classic EDS surprise.
Dental Challenges: Soft gums, frequent dental visits
Cleaning appointments bled for hours. Braces ruined your gums, and cavity-free teeth couldn’t hide how Ehlers-Danlos syndrome weakens oral collagen. My dentist called me “the fragile gums kid” long before diagnosis.
Struggle with Handwriting or Fine Motor Skills
Holding pencils exhausted your hands. “Sloppy” cursive got you detention, but collapsing finger joints made writing feel like gripping hot coals. Occupational therapy wasn’t provided – just red “needs improvement” marks.
Temperature Sensitivity and Easy Flushing
Cold halls made fingers ache; hot lunches triggered scarlet face-flushing. Classmates teased your “perpetual sunburn.” No one connected it to dysautonomia – when your body thermostat malfunctions.
Chronic Back, Neck, or Rib Pain
Backpacks felt like cinderblocks. Sleeping wrong meant days of rib pain so sharp you’d gasp. I wore sports bras to bed at 13 while friends wore crop tops – all guesswork before understanding slipping rib syndrome.
Sensitivity to Touch or Fabrics
Seamless socks were torture. Uniform tags itched like fire ants. Hugs felt crushing not cozy. Sensory overload wasn’t “drama” – it’s common neurodivergence with EDS that gets mislabeled as anxiety.
Hypermobile Flat Feet or Frequent Ankle Rolling
Running turned ankles inward constantly. Orthotics felt like stepping on Legos. Gym teachers yelled “watch your feet!” while tendons stretched beyond limits – classic hypermobility chaos.
People Doubted Your Pain or Called You a Hypochondriac
“You look fine!” “Just push through!” relatives said. Doctors prescribed Tylenol for dislocations. That gaslighting cut deeper than any injury. You learned to hide pain to be believed – a survival skill many disability advocates now call “masking.
Family “Oddities”: Relatives with similar unexplained symptoms
Aunt with “bad knees,” grandpa who dislocates shoulders golfing, cousin with “mystery allergies.” EDS whispers through generations like a secret language. Now contemporary dancer Cortney Gensemer’s research shows how these patterns connect.
Living with EDS: Reflections from the Community
When I shared my diagnosis online, flooded my DMs with stories like mine: the girl who hid her stoma under cheer uniforms, the teen drawing art & disabilities to cope with pain. “EDS sucks but I’m still here and I refuse to give up” isn’t just a slogan – it’s our anthem Many describe childhood as “playing Jenga while blindfolded.” The emotional toll? Isolation, self-doubt, and that nagging feeling you’re broken. But today’s communities – like Ehlers-Danlos Support UK – turn “me too” moments into lifelines.
When to Seek Help: Diagnosis and Management Today
Unlike our childhoods, diagnosis now follows clear criteria. If 3+ signs resonate, see a geneticist (for rarer EDS types) or connective tissue specialist. For hypermobile Ehlers-Danlos syndrome, doctors rule out mimics using the 2017 hEDS criteria. Modern management is hope-filled:
- physical therapy for EDS tailored to hypermobility (avoiding aggressive stretches!)
- pelvic health specialists for those struggling with bladder/pain
- integrative medicine approaches blending PT, nutrition, and pain psychology
My clinical research coordinator friend emphasizes: “Treatment isn’t about curing EDS – it’s about building your strongest possible body around it.” That might mean compression for POTS, mast-cell stabilizers for MCAS, or chiropractic care for EDS done with feather-light precision.
Resources for Patients and Families
Feeling overwhelmed? Start here:
| Resource | Why It Helps |
|---|---|
| The Ehlers-Danlos Society | Free doctor finder and pediatric toolkit for school 504 plans |
| Connective Wellness Podcast | Real talk on Mast Cell Activation Syndrome and daily hacks |
| Norris Lab Research Updates | Tracking cutting-edge studies (like that hypermobile Ehlers-Danlos syndrome blood test in development) |
Pro tip: Save Cortney Gensemer’s “Conversational Tools for Discussing the Ehlers-Danlos Syndromes” to explain your needs to skeptical teachers or coaches.
Conclusion
Running the track meet on knees held together by tape, hiding bruises under hoodie strings, wondering why your body felt like a house of cards – if this was your childhood, you’re not broken. You’re a pioneer navigating a world built for stiff-jointed people. Today, armed with knowledge about slipping rib syndrome, TMJ, and all those silent battles, you get to rewrite the story. That kid who thought their body betrayed them? She was actually building resilience muscles most never develop. And honestly? Those “flaws” forged someone who understands strength isn’t about never falling – it’s about knowing exactly how to get back up. Your journey matters, your pain is valid, and finding this list? That’s not an ending. It’s your first “aha” moment in a lifetime of self-advocacy.
Eleena Wills is a passionate health and wellness writer with over 5 years of experience in simplifying complex health topics for everyday readers. She holds a background in health communication and has contributed to multiple reputable wellness platforms. Eleena is committed to sharing science-backed tips on nutrition, mental well-being, fitness, and lifestyle habits that support long-term health. When she’s not writing, she’s experimenting with healthy recipes or practicing yoga.