23 Signs You Grew Up With EDS or Symptomatic Hypermobility: You’re Not Alone

Estimated reading time: 14 minutesLooking back, the signs were there — little things that didn’t seem connected at the time.

Many of the early symptoms of Ehlers-Danlos syndrome (EDS) and hypermobile EDS (hEDS) are dismissed in childhood as growing pains, clumsiness, or an overactive imagination.

This can look like extreme flexibility, joint instability, chronic fatigue, digestive issues, or unexplained pain.

If you grew up feeling like your body was different than everyone else’s, you aren’t alone.

I was the “bendy” kid, always bruised, always tired, bad sleep with insomnia, always a little different, but of course, no one ever mentioned hypermobility or hEDS. I became known as a hypochondriac in my family.

Like many people with EDS, I grew up thinking my symptoms were just quirks or bad luck.

I remember asking for headache pills when I was very small. I recall my GP telling my mum to feed me lettuce covered in salt – he must have been ahead of his time in the 70s. I loved the W sit at story time in school. My muscular pain started around age 12, followed soon after with stretch marks.

It wasn’t until much later, after working closely with our wonderful EDS community, that I realised these childhood experiences were actually early signs of a complex connective tissue disorder. I didn’t receive my formal diagnosis until I was 48.

We asked our Zebra Club community to share their experiences of growing up with EDS, and the response was overwhelming. and the same themes appear again and again: joints that pop out and back in, exhaustion that sleep never fixed, and bodies that simply worked by different rules.

Remember, we are all unique and have different constellations of symptoms and presentations. Let us know if you can relate to these or other signs you realize are related now.

What are the signs of EDS or hypermobility in childhood?

The signs of EDS or symptomatic hypermobility in childhood are patterns of joint instability, fatigue, chronic pain, connective tissue fragility, and sensory differences that often go unrecognised well into adulthood.

1. You were known for your “party tricks”

Those childhood party tricks — hyperextending fingers, touching your head with your feet, contorting your hands in ways that made friends wince — are classic early signs of joint hypermobility, where connective tissue laxity allows joints to move far beyond their normal range of motion.

• “You could do tricks with your finger joints, contort your lips in opposite directions as a child.” – Emily

• “Could and still can touch my head with my feet, from in front. Could do it from the back, contortion style.” – Anonymous
• “Crossing my index and middle fingers across the rest of my fingers without assistance from the other hand was another hand trick.” – Emily

2. The School Nurse Knew You Better Than Some of Your Teachers

Looking back, many of us can see that frequent illness and injury at school was far more than bad luck. Repeated infections, slow healing, and a body that seemed to struggle more than others were experiences that often went unexplained for years, long before anyone connected them to hypermobility or EDS.

• “You’re on a first-name basis with the school nurse.” – Anonymous
• “People tend to roll their eyes when you’re hurt or sick yet again.” – Anonymous
• “I would get really sick and catch everything that was going around and had Strep throat/ear infections, and sinusitis too many times to count.” -Alison

3. Bracing and support were needed at an early age

Needing braces, supports, and splints from a young age is a common early sign of joint instability in hypermobility and EDS. For many of us, the collection grew with every new activity we tried, and looking back at old photographs, the leaning into walls, furniture, and other people tells its own story.

• “When getting ready for a sports game, you have so many joint braces you’re nicknamed ‘The Bionic Girl’.” – BendyChristy
• “I had to wear braces on both of my knees and ankles in order to play sports.” – Anonymous
• “Looking at old photographs, I notice I’m leaning into things or people a lot, seeking support to stand upright or sit without a backrest.” – Anne-Claire

4. Your Joints Provided Their Own Sound Effects Track!

Joint clicking, cracking, and popping is a common experience for many of us, and often occurs with ordinary everyday movement. For many of us, it just became our background soundtrack!

• “Your shoulders cracked so often and so loudly that you got in trouble for it when you raised your hand in school.” – Clarose
• “Your knee has been noisy since childhood. You were always told noises don’t matter, but you weren’t buying it.” – Emily

5. You Were a Sports Paradox: Simultaneously Amazing and Disastrous

Many community members shared a sports paradox in childhood: excelling at activities that reward extreme flexibility and range of motion, while struggling with the coordination, stability, and endurance that team sports and ball games demand.

• “You can accomplish unusual feats in sports, but are always injured. Your trophies are only outnumbered by your casts and braces.” – Anonymous
• “Being really good at some PE things and really bad at others.” – Lucy
• “Very clumsy and can’t fathom how people play team sports that involve coordination.” – Kstewbloom
• “Kicking myself in the nose with my knee during a dance class when the teacher said to kick as high and hard as we could.” – Devon

6. Your handwriting was a constant struggle

Many of us experienced handwriting difficulties in childhood. Finger and wrist joints that hyperextend under pressure make gripping a pencil painful, tiring, and hard to control. What teachers often read as carelessness or lack of effort was frequently a physical struggle that no amount of practice worksheets was going to fix.

• “English teacher ripped my homework in front of everyone when I was a teenager as my handwriting was that bad.” – Lucy
• “Your handwriting was so terrible in 3rd grade the teacher sent you home for the summer w/ practice worksheets. In reality you just needed a fat pencil grip.” – Emily
• “Terrible handwriting and quick fatigue. My hand tends to do its own thing when writing.” – Mischa

7. Your Flexibility Made Yoga Instructors Jealous

Extreme flexibility in childhood can look impressive from the outside, but for many of us, something more complex. The range of motion that went far beyond what felt comfortable for others was often accompanied by the instability, fatigue, and pain. fatigue, and pain that distinguish symptomatic hypermobility from simply being bendy

• “I could put my feet easily behind my head or touch my head with my feet. I could turn my feet out very much so it scared people.” – Lucy
• “Could and still can touch my head with my feet, from in front. Could do it from the back, contortion style.” – Anonymous
• “You could kick the back of your own head.” – Caroline G

8. You Were a Walking Art Gallery of Unexplained Bruises

Bruising easily and often, with marks appearing from knocks that would not trouble most people, is something that comes up consistently when our community looks back at childhood. The bruises were real, the swelling was real, and the teasing for being ‘delicate’ was real. What was missing was the explanation.

• “Would have big bruises without any cause, and would be abnormally swollen and red when I hit myself into things (which happened often).” – Anonymous
• “Lots of ‘mystery’ bruises and skin would cut and bleed easily.” – Anonymous
• “I had so many unexplained bruises on my legs, and still do!” – Katie
• “And the bruises…so many bruises and blisters, I was teased for being so ‘delicate’ without anyone considering why this might be.” – Caroline

9. Your “Growing Pains” Were More Like “Growing Torments”

Looking back, what adults called growing pains were often something far more persistent and severe than the normal aches of childhood. Pain that interrupted sleep, made walking difficult, and drew the response ‘you sound like an old woman’ was real, and it deserved to be taken seriously.

• “Your mum regularly told you you sounded like an old woman because you were always complaining of being in pain in various places (which no one did anything about).” – Caroline G
• “Excruciating ‘growing pains’ for years.” – Jan
• “Growing’ pains so bad that I begged to be carried and could hardly walk, couldn’t sleep.” – Anonymous

10. Sleeping Beauty Had Nothing on Your Fatigue

The exhaustion so many of us felt as children went far beyond ordinary tiredness. Sleeping twelve hours and waking up just as tired, falling asleep in class, struggling to get out of bed — these were not laziness or lack of motivation, and they were not nothing.

• “Being tired a lot also comes to mind.” – Anne-Claire
• “Falling asleep in class.” – Lucy
• “Constant exhaustion that was blown off.” – Jan
• “As a teenager, I had significant fatigue. I could sleep 12+ hours a day and still be tired.”- Bethany
• “Never feeling rested and always having a hard time getting out of bed even as a child as I believe I always had chronic fatigue to some degree.” – Allison

11. Your Skin Had a Mind of Its Own

Skin that reacted in ways that baffled doctors and developed stretch marks long before anyone would expect them is something many people in the EDS and hypermobility community recognise from childhood. These were often early signs that connective tissue differences were showing up in the body’s largest organ.

Stretch marks at a young age are a part of the hEDS diagnostic criteria. Other symptoms like rashes and reactivity may point to Mast Cell involvement, like that seen in mast cell activation syndrome (MCAS).

• “Lots of stretch marks.” – Joanna
• “Stretch marks at age 16.” – Anonymous
• “Always highly reactive to any bites or stings, rashes, allergies, sensitivity, etc.” – Mischa
• “As a toddler my legs were always covered in hives. The doctor said it was just eczema and I’d grow out of it. The rashes were so bad that other moms were afraid to let me play with their kids because they thought I had something contagious. So my mom put me in tights to cover it up. I wore tights every day even throughout the hot summer months.” – Bethany
• “You had rashes & sometimes even hives on top of hives on top of hives. Your skin was so sensitive you had to wear all cotton. Metal grommets for buttons couldn’t touch your skin nor could elastic or your skin would react painfully.” – Emily

12. You Had a Special Relationship with Gravity

Clumsiness in childhood that went far beyond the ordinary — tripping over nothing, walking into things, missing the table by an inch — is something that comes up again and again when we look back. Poor proprioception and coordination made accidents, falls, and collisions a regular part of life, and earned many of us a reputation we didn’t deserve

• “Looking back I was really clumsy. I had x shaped legs, so I had the talent to trip over my own feet. I also bumped into things frequently and could just miss the table trying to put something on it.” – Anne-Claire
• “My early life reads like a list of reports from the accident book: Fell off a washing line when I was 3. Walked into a shop counter when I was 5. Walked through a plate glass window at 13.” – Joanna
• “As a child I was very clumsy. So clumsy my parents would joke that it was a good thing they didn’t name me ‘grace.’ So clumsy that my grandpa called me a literal bull in the china shop. – Bethany
• Always losing balance when walking due to ankle rolling and lack of proprioception, but I just thought I was clumsy.” – Emily
• “Running into walls all the time.” – Mischa

13. Your Joints Thought “Staying in Place” Was Optional

Joints slipping, subluxing, or dislocating from movements that would not trouble most people is one of the most recognisable experiences so many of us share. For some it was a shoulder, for others, an ankle or a knee — and more often than not, nobody around us questioned why it kept happening.

• “When I was little, my parents would swing me by my arms between them for fun, but because of my joint instability, my wrists and shoulders would often slip out of place.” – Anonymous
• “Repeated ER visits for dislocated elbow.” – Jan
• “I would twist my ankle far and get it back as if nothing happened.” – Anonymous
• “Could click one hip in and out.” – Joanna
• “Subluxed my patella every sports season from puberty until I graduated and somehow doctors never questioned why.” – theguth20
• “Showing up at school on crutches with a sprained ankle and then running around without them in the afternoon when everything ‘magically’ felt better because it went back into place.” – Devon

14. Your Sitting Style Was “Creative”

Sitting still in a conventional position was genuinely uncomfortable for many of us. The body naturally found its way into whatever configuration felt better, even if that looked strange to everyone else. Pretzel positions, W sitting, and perching sideways were not habits or fidgeting. They were the body solving a problem.

• “Sitting in very strange positions in class.” – Lucy
• “HATING sitting on my bum or with feet flat on the floor – lots of pretzel positions.” – Anonymous
• “W sitting, not crawling (I didn’t even shuffle, I just sat).” – Laura

15. Simple Tasks Made You Feel Like You Were Playing on Hard Mode

Tasks that peers handled without a second thought often required real concentration, adaptation, and energy. Throwing and catching a ball, carrying a bag, holding an instrument — these were not simple for many of us.

• “Problems with cycling, ball games, especially throwing balls, carrying bags or instruments, holding instruments.” – Lucy
• “I had proprioception issues that I now realize were from having hEDS. I could not get myself to do any movement head-first. No diving into water, no forward rolls, no cartwheels, and overall nothing that might be called ‘gymnastics.’” – Amber
• “I definitely had impaired proprioception early on as well and felt clumsy but also had a hard time throwing a ball, mind you the winged scapula didn’t help, but also had difficulty catching a ball.” – Allison
• “Painful fingers when pushing buttons (hyperextending).” – Jan
• “Incapable of catching and throwing balls. All sports that involved a ball were nearly impossible.” – Helene

16. You Hit Your Milestones on Your Own Unique Timeline

Developmental milestones that arrived early, late, or in an unexpected order are something that comes up regularly in the hypermobile community. Skipping crawling entirely, bottom shuffling instead, walking later than expected, or surprisingly early.

• “Didn’t crawl, but scooted and didn’t walk until 18 months.” – Mischa
• “My son never crawled, always bum shuffled – used as part of his autism diagnosis – he walked independently at 15 months and ran a week later!” – Sam48
• “Forget crawling or bum shuffling. I was walking at 9 months old 🤦🏼‍♀️” – Wabbittumshie

17. You Didn’t Need Anyone to Scratch Your Back for You

The flip side of hypermobility that many of us remember fondly is the practical independence that came with an extreme range of motion. Zipping up your own dress, applying sunscreen to your own back, never needing a backscratcher: these felt like advantages at the time, and in some ways they were. What we didn’t know was what else that range of motion was telling us.

• “You can go to the beach to sunbathe by yourself because you can apply sunscreen on your own back.” – Janinekits
• “Able to zip up my own dresses.” – Anonymous
• “Truly didn’t understand why anyone needed a backscratcher tool!” – Mischa

18. Standing Up Quickly Felt Like a Trust Fall with Gravity

Dizziness, lightheadedness, and almost fainting when standing up quickly is something a huge number of people in the hypermobility community experience. For most of us, it was so routine that we assumed it was simply normal, something everyone experienced. If this resonates, our post on dysautonomia explores this further.

• “Your entire life you had been dizzy standing up, & figured it was normal.” – Emily
• “Fainting on occasion.” – Lucy
• “Blacking out and almost fainting while gardening or cleaning in the summer.” – Anonymous
• “I would get very, very easily dizzy and motion sick at random times, not just carsick.” – Anonymous
• “Feeling like I was going to pass out in hot showers or hot tubs.” – Laura

19. Your Digestive System Played by Its Own Rules

Digestive difficulties in childhood are a recognised part of the connective tissue picture for many of us. Stomach pain that sent you home from school, bloating, constipation severe enough to end up in the emergency room. These felt unrelated to everything else at the time. They weren’t.

• “Frequently sent home from infant/junior school with abdominal pain.” – Joanna
• “Bloated and sore tummies (so impressed my mum could spell diarrhoea in my sick notes without looking it up).” – Wabbittumshie
• “ER trips for constipation as a child.” -Anonymous

20. Your Medicine Cabinet Was Better Stocked Than Most Adults

Becoming familiar with pain medication at an age when most children had no reason to know what ibuprofen was is something many of us recognise. Headaches, joint pain, and period pain that required prescription intervention as a teenager were not overdramatic. They were undertreated.

• “You started taking adult ibuprofen at age 9 yrs old for migraines.” – Emily
• “Then as a teen the heavy/painful periods having to get prescription meds for pain and having to take birth control for the heavy periods.” – Allison
• “As a teenager, my family used to tease me about having more doctors’ phone numbers than boys’ phone numbers in my phone.” – Devon

21. Your Body Had Its Own Unique Comfort Settings

Temperature regulation difficulties, including heat intolerance, are a recognised experience for many of us, where feeling too cold, too hot, or unable to adjust to environments others found perfectly comfortable was the norm.

• “Cold intolerance – I couldn’t be in a pool because I’d start shivering.” – Anonymous
• “Heat intolerance-overheating easily and getting cold easily likely due to dysautonomia.” – Allison

22. Your Respiratory System Seemed to Work Differently

Breathing that felt different, restricted, or simply harder than it seemed to be for others is something that comes up in the community more than you might expect. Frequent chest infections, a feeling of not being able to get enough air, lungs that seemed to fill up too quickly. These were easy to dismiss as unrelated to everything else.”

• “Feeling as if my lungs fill up really quickly and I can’t get enough air.” – Anonymous
• “Pneumonia and childhood bronchitis.” – Joanna

23. You didn’t get the support you deserved

Not getting the support you deserved is one of the most consistent and painful themes that runs through this community. Symptoms that were real, persistent, and significantly affecting daily life were regularly attributed to laziness, anxiety, weight, or simply growing up. For many of us, the journey to understanding what was actually happening took years, sometimes decades.

• “Assuming I was just weaker and lazier than others because I struggled to exercise, breathe, and stand/sit upright.” – Anonymous
• “Bullied by teachers for: bad handwriting, lack of proprioceptive/motor skills, ‘being lazy’, daydreaming.” – Lucy
• “As a young adult, I didn’t realize so many of my symptoms weren’t normal until I started to see doctors when I was older for the various symptoms they called things sprains, strains, or work stress. -Bethany
• “Pain was blamed on my weight or growing pains – KillinMeSmolls

Bonus: Raising Your Arms Above Your Head Felt Disproportionately Hard

Difficulty with tasks that require arms raised above heart level is something that comes up in the community more than you might expect. Getting breathless doing your own hair, feeling dizzy reaching for a shelf, struggling with anything overhead — these felt like personal quirks at the time rather than part of a larger pattern.

• “Not being able to do things with my hands if they were above the level of my heart or reaching over my head. I couldn’t work out why I was so good at crafts but then so rubbish at doing my own hair.” – Caroline
• “Oh my goodness! This! I couldn’t breathe if my hands were above my head!” – Laura Eads
• “Is this why I get out of breath and dizzy trying to braid my own hair?” – Celia

More signs our community recognise from 2026

When we asked our Zebra Club community to share their 2026 experiences, several more themes emerged that deserve recognition. These are community voices, not clinical claims.

• Moving more slowly than others:
  • “I was known for generally being slow.” – Lucy
  • “Slowness. To a point it became a characteristic.” – Helene
• Exercise and activities that ended in injury:
  • “Injured doing kickboxing so I stopped.” – Helen
  • “I studied karate. If I could go back in time and not do those stretches.” – Kathleen
• Being described as floppy as a baby:
  • “At birth the doctor described me as having floppy joints but then nothing was said about that again.” – Cathy
• Pelvic floor and connective tissue challenges:
  • “Hernias when I was only 28. Pelvic prolapse at 40.” – R
  • “Bladder and bowel prolapses in my late 30s.” – P
• Bladder pain and recurring infections:
  • “A lot of bladder pain and UTIs from childhood on.” – H

Did these signs sound familiar?

If you recognize many of these signs in yourself or your child, consider speaking with a healthcare provider knowledgeable about hypermobility disorders. Early recognition and proper management can help prevent complications and improve quality of life.

We have more resources to learn more about EDS or hypermobility, as well as more about how EDS presents in children and resources for parents for you to explore.

While hypermobility can present challenges, many in our community also note the unique strengths that come with this condition – resilience, creativity, problem-solving abilities, and a different perspective on the world.

This blog post was created using actual comments from our Zebra Club community members. Some comments have been edited for clarity and brevity. Names have been changed or omitted based on preferences

The Zebra Club is a movement therapy platform built specifically for people with hEDS and HSD. If reading this felt like someone finally understood your story, you might feel right at home with us.

Join The Zebra Club

Check out this video where I bust the “You’re too young to be in this much pain” and “It must just be anxiety.”

FAQ

Can EDS be diagnosed later in life?

EDS is a genetic connective tissue condition present from birth, though symptoms may not be recognised or diagnosed until adulthood. Diagnostic delay is common, with many people in the community receiving their diagnosis in their 30s, 40s, or later.

What are the strange symptoms of EDS?

Is being bendy as a child a sign of EDS?

Extreme flexibility alone is not a sign of EDS. When joint flexibility is accompanied by pain, instability, fatigue, or other connective tissue symptoms, it may indicate symptomatic hypermobility. A clinician experienced in hypermobility disorders can assess whether symptoms warrant further investigation.

Why was I always clumsy as a child?

Clumsiness in childhood associated with hypermobility is often related to poor proprioception — the brain’s ability to sense where the body is in space. When connective tissue is lax, proprioceptive signals are less reliable, making coordination and balance more difficult than average.

Why was I told I was “too young” to be in pain?

Dismissal of pain in young people with EDS or hypermobility is a well-documented barrier to diagnosis. Symptoms are often attributed to growing pains, anxiety, or attention-seeking. This is a recognised problem in hypermobility care, not a reflection of how real the pain was.

Jeannie Di Bon

Jeannie Di Bon is a movement therapist, educator and author specializing in hypermobility, Ehlers-Danlos Syndrome and chronic pain. She is the founder of The Zebra Club app and the creator of the Integral Movement Method.