Puberty and Ehlers-Danlos Syndrome: Navigating the Perfect Storm
- Antonia Kenny
- Apr 15
- 4 min read
Ah, puberty. That magical time when your body goes rogue, your emotions attempt a hostile takeover, and you suddenly start sweating in places you didn’t know had sweat glands. Now throw Ehlers-Danlos Syndrome (EDS) into the mix—a group of genetic connective tissue disorders known for making joints hypermobile, skin a bit too stretchy, and your day-to-day life feel like a medical drama with no script.
Let’s break down this delightful hormonal horror show and explore what puberty really means for people with EDS—physically, emotionally, hormonally, and socially. Spoiler alert: it’s complicated, but you're not alone.
Hormones: The Wild Cards of Puberty Estrogen & Progesterone: The Looseners
If you’re AFAB (assigned female at birth), estrogen and progesterone are the first hormonal culprits to wreak havoc. Both play roles in connective tissue structure, and unfortunately, they don’t always play nice when EDS is in the picture.
Estrogen is known to increase joint laxity, especially during ovulation and early puberty. It affects collagen metabolism, weakening an already wobbly scaffolding (HypermobilityMD).
Progesterone can increase inflammation and fluid retention, which adds fuel to the pain-and-fatigue fire. Combine this with monthly hormone fluctuations, and EDS symptoms—like joint instability, migraines, and fatigue—can spike around menstruation (Mayo Clinic Connect).
That’s why many teens with EDS first experience major flares after their first period, and why symptom tracking by cycle phase can be a game-changer.
Testosterone: The Unreliable Ally
If you’re AMAB (assigned male at birth), testosterone builds muscle, which can help support unstable joints. But:
It doesn’t magically fix the core collagen issue.
It may mask symptoms, leading to delayed diagnosis.
There’s still a risk of joint pain, fatigue, and POTS symptoms as the hormonal shifts intensify (EDS News).
So, no—puberty doesn't “toughen it out.” It just makes it look like it did for a while, until you try to lift something or walk upstairs too quickly.
Bonus Symptom: POTS, Because One Disorder Isn’t Enough
Postural Orthostatic Tachycardia Syndrome (POTS) often makes its grand entrance during puberty, especially in people with hypermobile EDS (hEDS). It’s a form of dysautonomia—where your autonomic nervous system forgets how to do its job.
Common symptoms: rapid heartbeat when standing, dizziness, nausea, brain fog, fatigue, sweating, heat intolerance. Basically, your body’s Wi-Fi keeps dropping the signal.
It’s often misdiagnosed as anxiety, which is hilariously unhelpful.
Hormonal changes in adolescence (especially estrogen) can amplify POTS symptoms (Dysautonomia International, The Dysautonomia Project).
Emotional Impact: Beyond “Moody Teen” Stereotypes
Here’s where it gets real. Puberty is already hard. Add EDS and you’ve got a trifecta of frustration, grief, and social disconnection that many teens face alone.
1. Feeling “Other” Too Early
While peers are comparing gym shoes, you’re comparing physio appointments.
You miss out on school trips, sports, or sleepovers—not because you’re antisocial, but because your body won’t cooperate.
This leads to early-onset identity dissonance, where you feel like your body didn’t get the memo on how to be a teenager.
2. Grieving the Life You Imagined
Yes, grief. Not for someone lost, but for the healthy, pain-free version of yourself that never arrived.
You grieve the sports you can’t play.
The spontaneous plans you can’t join.
The future that now has a question mark on it.
And because the condition is invisible, most people don't understand what you're going through—so the grief becomes quiet, and often internalized (Alpenglow Pain).
3. Anger, Anxiety, and Emotional Exhaustion
Teens with EDS frequently face:
Medical gaslighting (“It’s just growing pains” / “You’re too young to have real pain”).
Emotional invalidation (“You’re just dramatic” / “You need to push through it”).
Mental health struggles—including anxiety, depression, and PTSD from chronic medical trauma (NCBI study on psychiatric disorders and EDS).
And when your symptoms are brushed off, that inner monologue turns against you:
“Maybe I’m just lazy. Maybe it is all in my head.”
Spoiler: It’s not. Your pain is real. Your fatigue is real. And no, you're not being "too sensitive."
4. Body Dysmorphia and Disconnection
With EDS, puberty doesn’t just make you feel different—it can look different too.
Hypermobile joints may cause unusual posture or gait.
Skin may bruise or scar more easily.
You might experience weight fluctuations or muscle imbalances from pain avoidance.
This creates a physical disconnection, where your body doesn’t feel like it belongs to you. For some, this leads to body dysmorphia, especially if compounded by gender dysphoria or neurodivergence (both of which are statistically higher in the EDS community).
How to Survive It (Without Screaming into the Void)
1. Symptom Tracking
Log your symptoms alongside your cycle or hormonal patterns. It may feel tedious, but it helps identify triggers—and shows clinicians you're not imagining things. Try apps like:
2. Find a Multi-Disciplinary Team
EDS isn’t a one-doctor kind of problem. Ideally, you’ll need:
A GP or paediatrician who listens.
A physiotherapist who understands hypermobility.
A therapist experienced in chronic illness and trauma.
A POTS-aware cardiologist or neurologist, if relevant.
3. Support Mental Health Like It's a Core Symptom (Because It Is)
Mental health support isn’t a luxury. It’s part of your treatment plan. Look into:
CBT (Cognitive Behavioural Therapy) tailored for chronic illness
Support groups (online or in-person)
Trauma-informed therapists who understand medical PTSD
Resources:
The Mighty
EDS UK – Youth Support
Mind
4. Community Is Everything
Being a teen with EDS can be isolating. Find your people—whether it’s through Discord servers, Reddit threads, Instagram pages, or advocacy groups. Talk to others who get it.
Some suggestions:
Final Thoughts: You Are Not Broken
You are not dramatic. You are not weak. You are not "too young" to be in this much pain.You are a teenager navigating a life that demands more from you than most adults can comprehend.
But here’s the truth: you are still you—with your humour, your voice, your weird hobbies, your sharp observations, and your ridiculous knowledge of obscure fandoms. You are not your diagnosis, even if some days it tries to take centre stage.
And puberty? It’s a mess. But it’s one you can survive. Especially if we start talking about it more—and stop expecting teens with EDS to either suffer in silence or become inspirational memes.
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