Chronically Bendy: the EDS diaries

Chronically Bendy: the EDS diaries Part human, part jellyfish. 100% tired. Learn about the glamorous life of hEDS, PoTS & pain with me. Author of The Bendy Handbook: linktr.ee/chronically_bendy

DON’T BE A STEPHAN!Let’s take a second to sprinkle some education onto silly Stephan:🩺 EDS (Ehlers-Danlos Syndromes): A ...
17/09/2026

DON’T BE A STEPHAN!

Let’s take a second to sprinkle some education onto silly Stephan:

🩺 EDS (Ehlers-Danlos Syndromes): A systemic, genetic connective tissue disorder that affects collagen (the body's glue). It causes chronic pain and joint dislocations. It was first documented over 120 years ago, not on TikTok.

🧠 ADHD / Autism: Neurodevelopmental conditions rooted in distinct brain chemistry and executive dysfunction. They aren't "excuses" or modern buzzwords; they are clinically recognized, lifelong neurological profiles.

🛑 "The Big Benefit Claim" Myth: Nobody chooses the systemic exhaustion of EDS or the daily burnout of unaccommodated neurodivergence just to battle a notoriously grueling, degrading, and difficult disability benefits system.

If you encounter a Stephan today, please know that your lived experience is valid and you are not alone 🦓🫶🏻

Let’s talk about the surprise fibromyalgia diagnosis:
13/09/2026

Let’s talk about the surprise fibromyalgia diagnosis:

Hernia? Bizarre EDS-related scar? An alien? 👽 No - the weird thing growing out of my belly button was ENDOMETRIOSIS (pic...
12/09/2026

Hernia? Bizarre EDS-related scar? An alien? 👽

No - the weird thing growing out of my belly button was ENDOMETRIOSIS (pic in comments)

ANOTHER unexpected plot twist from my own abdomen… 🥴

So my consultant prescribed Ryeqo; a new medication with three active ingredients to the calm monthly monster and its attempt at colonising the rest of my body.

But before I start taking it, I’d love to hear your experiences? Have you tried Ryeqo? Or perhaps you’ve tried something else that’s helped?

While we’re here… 🧠 Can we talk about the absolutely MASSIVE crossover between hypermobility and neurodivergence?Autism....
11/09/2026

While we’re here… 🧠

Can we talk about the absolutely MASSIVE crossover between hypermobility and neurodivergence?

Autism. ADHD. Dyspraxia. hEDS. HSD.

SEDSConnective has been doing some brilliant work looking at exactly this overlap, alongside researchers including Dr Jessica Eccles, and the emerging research is pretty bloody interesting.

Because we know connective tissue isn’t just your joints… It’s in your blood vessels. Your organs. Your nerves. Your brain.

There ✨is✨ a link between hypermobility and neurodivergence. The research is increasingly showing that.

What we’re still working out is exactly why…

So perhaps it’s time we stopped treating the body like a collection of completely unrelated parts.

It’s one body 🦓🫶🏻

But at least it’s Friday 💀
11/09/2026

But at least it’s Friday 💀

“HOW CAN ONE PERSON HAVE SO MANY DIAGNOSES?”Maybe start by learning what a SYNDROME actually is.EDS is NOT a joint condi...
10/09/2026

“HOW CAN ONE PERSON HAVE SO MANY DIAGNOSES?”

Maybe start by learning what a SYNDROME actually is.

EDS is NOT a joint condition.

Connective tissue is EVERYWHERE.

Blood vessels & blood
Eyes
Teeth
Mast cell environments
Digestive system
Heart valves
… the list is endless!

So when something affecting connective tissue affects the whole body, why would we expect the consequences to neatly stop at the knees?

They don’t.

That’s why someone with EDS might end up seeing rheumatology, cardiology, gastroenterology, gynaecology, dermatology, neurology and pain services.

Not because we’re “suspiciously” collecting diagnoses like Pokémon.

Because we have one body.

And that body is made of connective tissue.

A syndrome is a collection of signs, symptoms and clinical findings that occur together.

So multiple diagnoses in someone with a multisystem connective tissue disorder is NOT suspicious…. Sometimes they’re the only bloody clue!

So please stop asking: “How can they have all those conditions?”

Start asking: “What connects them?” 🦓🫶🏻

👋🏻🪑
09/09/2026

👋🏻🪑

Looks like I’ve upset a certain sector of Telegraph readers 👀So… let’s get into the receipts.One of the arguments in Pop...
09/09/2026

Looks like I’ve upset a certain sector of Telegraph readers 👀

So… let’s get into the receipts.

One of the arguments in Poppy Coburn’s article is that having multiple chronic conditions is somehow so statistically unlikely that it makes us “suspicious.”

Except… multi-morbidity is ✨incredibly✨ common.

A study of more than 60 million people in England found that 14.8% had multiple long-term conditions.

That’s MILLIONS of people.

So when someone has POTS + EDS + fibromyalgia + endometriosis, for example, the answer does NOT mean:

“She must be making it up”

In this case it’s actually:

“Her collagen is messed up… EVERYWHERE!”

So, if we’re going to make claims about how improbable coexisting diagnoses are, perhaps we should start with some facts, Pops 😘

Comorbidity > conspiracy 🦓🫶🏻

Poppy Coburn, we need to talk.I’ve read beyond the headline, and this isn’t merely a piece saying “there may be overdiag...
06/09/2026

Poppy Coburn, we need to talk.

I’ve read beyond the headline, and this isn’t merely a piece saying “there may be overdiagnosis online.”

There are legitimate questions to have about social-media health content, commercialisation, self-diagnosis and dodgy practitioners.

BUT this article repeatedly collapses those questions into a narrative about young women collectively manufacturing illness, adopting disability as an identity and withdrawing from productive life.

And the particularly fu***ng obnoxious:

“were they not decked out in the accessories of their disease, it would be impossible to perceive the conditions…”

…is a spectacularly loaded way of talking about invisible disability.

The really galling thing is the acknowledgement that POTS, ME and other chronic illnesses can be genuine and disabling, and quotes the chair of POTS UK saying that patients are frequently told their symptoms are psychological.

Then Coburn basically says - yes, these illnesses exist… but look at all these women talking about them online, therefore perhaps the problem is the women 🤯

And the bit about people having multiple conditions being evidence of “bad luck” being too improbable is exceptionally poor reasoning. Comorbidity is absolutely NOT the bizarre statistical anomaly she presents it as.

Also: EDS. Coburn casually drops EDS into her list of fashionable acronyms and then uses the broader “sickfluencer” thesis to cast suspicion over the whole ecosystem. That’s going to land very differently when you’re talking about people with actual diagnosed connective-tissue disorders, autonomic dysfunction, chronic pain etc.

The article starts with a legitimate question - are people being misdiagnosed or exploited online? But then begins suggesting that the visibility of disabled women is itself evidence of a sickness culture, which is something else entirely.

That’s not neutral reporting. That’s framing.

Come and tell me what I got wrong… I’ll wait 🦓

🙃
06/09/2026

🙃

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