Some people say, 'Why bother getting diagnosed with hEDS if there’s no cure?'

Here’s the thing—people can’t manage illnesses that they don’t understand. Without a diagnosis, people often push through pain or dislocations, thinking it’s all in their head, just bad luck, or that their constant fatigue is just laziness.

But hEDS (hypermobile Ehlers-Danlos syndrome) is real, and it isn’t static. It can get worse over time—soft tissue damage can add up, muscles overcompensate, pain spreads, and things like dysautonomia can worsen if you don’t know what you’re dealing with.

Getting diagnosed gives you a roadmap, and you can slow that progression. Things like targeted strength training, physical therapy, bracing, pacing your energy, treating things like POTS (postural orthostatic tachycardia syndrome) or GI (gastrointestinal) issues, and awareness of surgery or medication precautions can make a huge difference.

You learn that you’re not ‘dramatic’—your body works differently. A diagnosis gives you the language, validation, and tools that can prevent things from getting worse in the future.

An hEDS diagnosis is important—and of course doesn’t solve everything.

It can be very hard to find the right kind of help after getting a diagnosis (not to mention how hard it can be to get diagnosed in the first place), and people often have to continue asking to be taken seriously. Ongoing treatment can also be quite expensive.

The diagnosis is just a starting point. And there are many different kinds of therapies that can help aside from the few just mentioned once you have a care team that knows what you need.

Click here for The Ehlers-Danlos Society Healthcare Professionals Directory to see if there’s a provider located near you.

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.

'Why Bother Getting Diagnosed With hEDS if There’s No Cure?'

Here’s the thing—people can’t manage illnesses that they don’t understand. Without a diagnosis, people often push through pain or dislocations, thinking it’s all in their head, just bad luck, or that their constant fatigue is just laziness.

The diagnosis is just a starting point. And there are many different kinds of therapies that can help aside from the few just mentioned once you have a care team that knows what you need.

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