By 
Growing up with Ehlers-Danlos Syndrome (EDS) is often a lesson in how to blend in with a world that is made for bodies that bend just right, but not too much. It means years of pain with no reason, having symptoms that aren’t taken seriously, and having to learn to be strong, not because they want to, but because they have to. We have 23 ways to tell if you have Ehlers-Danlos syndrome.
It’s not just one disease; it’s a group of genetic connective tissue diseases that affect collagen, the protein that makes skin flexible, joints flexible, and blood vessels stable. Even though EDS shows up in different ways in different people, their lives tend to follow a very similar path, one that is only fully understood in reflection.
There is no effort to make a clinical diagnosis in this article. It’s a mix of personal stories, medical observations, and socio-emotional insights. It shows 23 signs—some minor, some painfully obvious—that you may have had EDS as a child. These 23 Signs You Grew Up With Ehlers-Danlos Syndrome give a deeply human look into a disorder that is often misunderstood, whether you are newly labelled, questioning yourself, or helping someone with the condition.
1. You were constantly referred to as “double-jointed,” but it didn’t feel flattering.
Perhaps you could perform the splits or bend your thumb to your forearm with ease when you were younger. It was dubbed “party tricks” by adults. However, they failed to notice the discomfort that followed seclusion or the sensation that your joints were always just a bit too lax.
2. Every time you walked on uneven ground, your ankles rolled.
Chronic ankle instability is common in children with EDS. You understood that the constant fear of falling was what others referred to as clumsiness. Going on a walk? A nightmare. Gravel roads? A risk.
3. You Didn’t Know How Your Knees Got Bruised
EDS patients are prone to bruises, and many kids are falsely accused of being neglected or roughhousing. You discovered early on that even if you can’t recall the story, your skin can still tell it.
4. “Growing Pains” Did Not End
When you stopped growing, the dull, throbbing sensation in your arms and legs—what doctors called “growing pains”—didn’t go away. For children with EDS, this discomfort is persistent and frequently undiagnosed by routine paediatric examinations.
5. It’s impossible to hold a pencil correctly.
Fine motor abilities were challenging due to finger joint hypermobility. Teachers may have criticised your handwriting for being sloppy or sluggish. Nobody enquired about the hardship of writing itself.
6. Gym Class Was an Enigma You Were Unable to Solve
School fitness exams were not made for hypermobile joints, from pull-ups that dislocated a shoulder to sit-ups that caused neck pain. They called you uncoordinated, unfit, or not trying hard enough.
7. By middle school, you had a drawer full of braces.
Finger splints, knee wraps, ankle braces, and wrist protectors were all purchased long before the term “hypermobility” was coined. You were aware that you needed assistance keeping your joints in position.
8. You felt older than you actually were.
You didn’t recover from your injuries like your peers did. On field outings, you might have sat out or walked more slowly. You became aware of your body’s limitations at a young age, which frequently made you feel decades older.
9. Physicians either didn’t think you were real or didn’t know how to respond.
The underdiagnosis of EDS is well known. Most likely, you heard:
- “It’s simply anxiety.”
- “Chronic pain is too young for you.”
- “Everything is in your head.”
- And the most annoying: “I think you look fine.”
10. You Were Sensitive to All Things, Particularly Drugs and Painkillers
It’s common to learn that your body metabolises medications differently as a child with EDS. Local anaesthetics were ineffective. You became sick from antibiotics. The dentist had to quadruple numb you because you were “that kid.”
11. Your “Sensitive Stomach” Was There Long Before It Was Named
Constipation, reflux, and nausea are frequently written off as “nerves,” worry, or IBS. Although it is rarely connected in early diagnosis, many EDS patients actually also experience gastroparesis or gastrointestinal dysmotility.
12. No one gave a damn when your heart skipped beats.
Dizziness or a fast heartbeat were dismissed as signs of teenage stress. Postural Orthostatic Tachycardia Syndrome (POTS), a prevalent comorbidity in EDS, could have been the cause of these symptoms.
13. Until you were unable to keep up, you were “The Flexible One” in dance class.
You may have been naturally gifted at gymnastics or dance due to your hyperflexibility. However, as time went on, the shared instability made involvement uncomfortable and even risky. What started off as a strength turned into a weakness.
14. Your Skin Felt Like Paper Tissue
It reacted to harsh textiles or adhesives, healed slowly, and left scars easily. Even though you made jokes about being a “delicate flower,” you understood deep down that it wasn’t typical.
15. Pained Sitting Still. Standing in pain. Everything was painful.
You discovered that being still hurt, so you learnt to fidget. Family dinners, lengthy car drives, and classrooms all turned into endurance drills. Nobody noticed that you were constantly doing calculations in your head to remain somewhat at ease.
16. Your First Language Was Fatigue
You were always worn out. Bone-deep tired, but not drowsy. Taking naps didn’t help. Vitamins didn’t either. Doctors attributed it to puberty, food, or screens. However, exhaustion was as inevitable as gravity.
17. You Frequently Experienced Flare-Ups or “Mystery Fevers”
Inflammation, abrupt bodily pains, and low-grade fevers appeared and disappeared without warning. These were merely a component of the systemic dysregulation that EDS can cause; they weren’t infections.
18. You Have Become an Expert at “Masking” Pain
You learnt to cover up your misery. Despite joint agony, I’m smiling. Walking despite experiencing hip instability. Declaring “I’m fine” since revealing the reality would be too time-consuming or entail dismissal nonetheless.
19. Your limitations complicated your friendships.
Plans are being cancelled. I need assistance. being incapable of doing what other people did. You occasionally distanced yourself because you were afraid of becoming “the flaky one” or the “high-maintenance friend.”
20. You Achieved Academic Success—Because You Had Control Over That
Academics might have been your safe haven when social gatherings or sports were out of your reach. To make up for your physical frailty, you learnt to be extremely intelligent.
21. You were aware of pain but lacked the necessary vocabulary
Stealing? Boring? Shooting? Aching? You were aware of the feeling but were at a loss for words. Terms like “neuropathic” or “joint instability” didn’t really fit until you were an adult.
22. Attending doctor’s appointments was a family affair and a drain.
endless trips to labs, orthopaedists, therapists, and specialists. No one else seemed to get the complete picture, so you learnt early on how to recite your own symptoms and fill out medical documents.
23. Receiving a diagnosis marked a new beginning rather than the end.
Whether it was at 14 or 34, when the parts eventually fit together, it didn’t “solve” anything. However, it provided background. It provided comfort. It transformed anarchy into something identifiable, measurable, and tolerable.
The importance of these signs
Invalidation is a constant part of growing up with Ehlers-Danlos Syndrome. The symptoms are rarely seen together; instead, they are grouped, ignored, or given the wrong diagnosis. As a result, EDS is often not noticeable, so teachers, doctors, and even family members don’t notice it.
According to personal experience and medical trends, these 23 signs can help find a story that has been kept secret for a long time. Early detection can help speed up the diagnosis, improve pain management, and, most importantly, give people who have spent their lives feeling like outsiders in their own bodies a sense of connection.
Conclusion, naming the invisible
Not only is growing up with Ehlers-Danlos Syndrome a physical experience, but it’s also a social and emotional one. To advocate, adapt, survive, and rebuild is what it teaches you. There is still a long way to go before everyone understands how serious EDS is, but every story told is a step in the right direction.
Anyone who saw themselves in these signs, know this: You’re not alone. That’s not your imagination. You and your body matter—you are hypermobile, healing, and completely human. 23 Indicators That You Have Ehlers-Danlos Syndrome and Have Had It Your Whole Life.
FAQs
1. Describe Ehlers-Danlos Syndrome (EDS).
Genetic diseases in connective tissue, like Ehlers-Danlos Syndrome, affect collagen, which can make joints more mobile, skin more elastic, and cause chronic pain. Different types have different signs and levels of severity.
2. How soon do you usually notice signs of EDS?
Several symptoms show up in childhood, such as frequent joint accidents, tiredness, bruises, delayed motor skills, and stomach problems. Despite this, diagnosis is often delayed because people aren’t aware of the problem and signs can be misleading.
3. What makes it so hard to identify EDS?
It’s common for EDS symptoms to be mistaken for those of other conditions, like nervousness, growing pains, or psychosomatic problems, because many of the symptoms, like tiredness or limited flexibility, can seem harmless or be ignored.
4. Can EDS be cured or treated?
The condition can’t be cured, but people can handle their symptoms with physical therapy, pain management, changes to their lifestyle, and help for other conditions like POTS or gastrointestinal disorders. Finding and fixing problems early on makes people’s lives better.
5. What can I do to help someone who had EDS as a child?
Respect the person’s physical limits, listen without judging, learn about the situation, and offer emotional and practical support. Helping someone with a long-term illness that is hard to see can be greatly enhanced by expressing validation and understanding.