23 Signs You Grew Up with Ehlers-Danlos Syndrome or Symptomatic Hypermobility

Estimated reading time: 9 minutesLooking back, the signs were there — little things that didn’t seem connected at the time.

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 Ehlers-Danlos syndrome (EDS). 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.

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.

Here are 23 signs that might indicate you grew up with hypermobility or EDS

1. You were known for your “party tricks”

Those unusual finger, thumb, and hand contortions that amazed (or grossed out) your friends were actually signs of joint hypermobility. Many community members recall entertaining friends with unusual flexibility:

• “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

Frequent visits to the nurse’s office for unexplained pains, injuries, and ailments became a regular part of your school routine.

• “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

Your collection of joint supports, braces, and splints grew with each new activity or sport you tried. You may have noticed you needed to lean against things.

• “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!

The symphony of sounds your body made during normal movement was the soundtrack to your childhood.

• “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

You could perform impressive physical feats one moment, then struggle with basic coordinated movements the next.

• “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

6. Your handwriting was a constant struggle

The struggle to comfortably hold a pencil led to handwriting that was often illegible, painful to produce, and frustrating for everyone involved.

• “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

Your extreme flexibility went well beyond normal childhood bendiness and sometimes made others uncomfortable.

• “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

Your tendency to bruise easily left you constantly explaining mysterious marks that appeared with little or no trauma.

• “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

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

The intense pain in your legs, joints, and back was dismissed as normal childhood growing pains, but it was far more severe and persistent.

• “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

Exhaustion was your constant companion, yet no amount of sleep seemed sufficient to fully recharge your batteries.

• “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

From unexplained stretch marks to mysterious rashes and allergic reactions, your skin displayed the telltale signs of connective tissue differences.

Stretch marks at a young age are a part of the EDS 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

Poor proprioception and coordination made you prone to accidents, falls, and collisions that earned you a reputation for clumsiness.

• “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

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

Partial or complete dislocations happened with alarming frequency and from seemingly minor movements or activities. Joint instability led to frequent injuries

• “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

14. Your Sitting Style Was “Creative”

Conventional sitting positions were uncomfortable, leading you to twist into positions that maybe looked painful but felt better for your body.

• “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

Activities that seemed effortless for peers required extra concentration, adaptation, and energy for you to accomplish.

• “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

16. You Hit Your Milestones on Your Own Unique Timeline

Your motor development didn’t follow the typical pattern, with some milestones reached early and others notably delayed.

• “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

Your exceptional flexibility allowed you to reach and bend in ways that mystified others who couldn’t understand why you didn’t need help.

• “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 even fainting when changing positions were early signs of dysautonomia that went unrecognized.

• “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

19. Your Digestive System Played by Its Own Rules

Unexplained stomach pain, digestive issues, and bathroom emergencies were a regular part of your childhood experience.

• “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’

You became familiar with pain medications and treatments at a young age due to recurring headaches, joint pain, and other symptoms.

• “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

21. Your Body Had Its Own Unique Comfort Settings

Temperature regulation issues made comfort a constant challenge in environments others found perfectly fine.

• “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 difficulties, frequent infections, and unusual respiratory symptoms suggested connective tissue differences affecting your lungs.

• “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

The journey to diagnosis was long and often involved being told symptoms were psychological, exaggerated, or just part of growing up.

• “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

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

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 condition you are born with, though symptoms are not always noticed until later in life. It is still lacking the recognition it deserves, and many people face diagnostic delays and are diagnosed later in life.

What are the strange symptoms of EDS?

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.