Why Bother Getting Diagnosed With hEDS if There’s No Cure? (And Why It Still Matters)
When it comes to hypermobile Ehlers-Danlos syndrome (hEDS), one question gets asked a lot: "Why bother getting diagnosed if there’s no cure?"
It’s a fair question. After all, there is currently no cure for hEDS. Getting diagnosed doesn’t suddenly erase pain, fatigue, dislocations, or problems like postural orthostatic tachycardia syndrome (POTS) or gastrointestinal (GI) distress. And sometimes, it doesn’t even lead to immediate relief or understanding from healthcare providers.
But that doesn’t mean it’s not worth it. In fact, for many, getting diagnosed is a turning point that changes many things.
You Can’t Manage What You Don’t Understand
Without a diagnosis, people often:
Push through joint pain, thinking it’s normal or “just aging”
Blame chronic fatigue on laziness or poor motivation
Feel gaslit into believing their symptoms are “just anxiety”
Dismiss their dislocations or instability as clumsiness
Get told their GI problems are “just IBS” or their dizziness is “just dehydration”
But hEDS is a real medical condition that impacts every connective tissue in the body. If you don’t know it’s there, you may continue to ignore warning signs—and that can make things worse over time.
hEDS Isn’t Static—It Can Worsen Without Management
Without a clear diagnosis and management plan, hEDS can gradually worsen:
Muscles overcompensate for unstable joints
Soft tissue injuries accumulate
Chronic pain spreads or intensifies
Autonomic issues like POTS or GI dysmotility may worsen
Everyday tasks become harder and more exhausting
Getting diagnosed doesn’t fix these things, but it slows the progression and allows for targeted support before the damage snowballs.
A Diagnosis Gives You a Roadmap
Once diagnosed, you can start building a care plan tailored to your body. This often includes:
Targeted physical therapy (PT) or physiotherapy for proprioception and joint stabilization
Strength training that respects connective tissue limitations
Pacing strategies to reduce post-exertional crashes
Treatment for comorbid conditions like POTS, mast cell activation syndrome (MCAS), GI issues, and sleep dysfunction
Bracing or orthotics for joint support
Surgical and medication awareness—crucial since some medications (like fluoroquinolones) and surgical decisions carry more risk in hEDS
It’s not about finding one magic fix. It’s about building a supportive, multi-faceted toolkit.
It Validates What You've Always Felt
So many people with hEDS grow up hearing:
“You’re just sensitive”
“You’re being dramatic”
“Everyone’s tired”
“You just need to toughen up”
But when you finally get a diagnosis, you learn you weren’t overreacting. Your body works differently—and there’s a name for it.
That kind of validation can be life-changing, especially after years (or decades) of being dismissed, misdiagnosed, or misunderstood.
It Gives You the Language You Need
Having a diagnosis allows you to:
Communicate clearly with healthcare providers
Explain your condition to family, friends, employers, or schools
Access accommodations, therapies, and disability supports
Connect with others going through similar experiences
Language brings clarity. It helps you advocate for yourself, ask better questions, and recognize patterns you might otherwise miss.
But It’s Not a Magic Answer—It’s the Starting Line
It’s true: the diagnosis is just the beginning.
It may take time to find a provider who understands hEDS
You may still have to advocate fiercely to be believed
Treatment can be expensive, time-consuming, and limited depending on where you live
Insurance and access barriers still exist
But without the diagnosis, those doors often stay shut entirely. With it, you at least gain the right map, even if the journey is hard.
The Diagnosis Still Matters
There may be no cure for hEDS yet, but that doesn’t make the diagnosis meaningless. In fact, it can be the difference between:
Continuing to blame yourself…or learning how to support your body
Being dismissed by default…or starting to advocate with clarity and language
Worsening symptoms over time…or learning strategies to protect and preserve your function
So yes—it’s worth it. Because you deserve to understand what’s happening in your body, and you deserve care that honors the full picture.
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Disclaimer: This blog post is for informational purposes only and shall not be construed as behavioral health or medical advice. It is not intended or implied to supplement or replace treatment, advice, and/or diagnosis from your own qualified healthcare provider.