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
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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

🙃

'A cohort of young people - somewhat cruelly dubbed "sickfluencers" - want to tell you about their conditions and convin...
06/09/2026

'A cohort of young people - somewhat cruelly dubbed "sickfluencers" - want to tell you about their conditions and convince you they are real.

'But, were they not decked out in the accessories of their disease, it would be impossible to perceive the conditions they consider to be so central to their interaction with the world'

The Telegraph - I’m sorry, WTF?! 😳

Caramel the viral “melting” dog looked totally normal until age 6 - which means his collagen packed its bags right at th...
02/09/2026

Caramel the viral “melting” dog looked totally normal until age 6 - which means his collagen packed its bags right at the doggy equivalent of perimenopause 👀

☀️BANK HOLIDAY GIVEAWAY☀️I’m giving away ONE copy of The Bendy Handbook 📕 PLUS a set of EDS Emergency Cards 🆘To enter, j...
31/08/2026

☀️BANK HOLIDAY GIVEAWAY☀️

I’m giving away ONE copy of The Bendy Handbook 📕 PLUS a set of EDS Emergency Cards 🆘

To enter, just finish this sentence in the comments:

“Having EDS means…” 👇

I have a feeling this comment section is going to be equal parts hilarious, heartbreaking and wildly relatable 😂 (you can tag a friend for a bonus entry)

One winner will receive both prizes!

AND for the next 24 hours…

Every order of The Bendy Handbook gets an EDS Emergency Card FREE!

No code, no faff - just order within the next 24 hours and I’ll sort it!

Happy Bank Holiday, you beautiful bendy bunch 🦓🫶🏻

🚨hEDS & Endometriosis 🚨 You’re not unlucky twice…How many of us have been handed a diagnosis of hypermobile Ehlers-Danlo...
29/08/2026

🚨hEDS & Endometriosis 🚨

You’re not unlucky twice…

How many of us have been handed a diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS), only to later end up with an Endometriosis diagnosis (or vice versa)? For a long time, doctors treated these as completely isolated issues. But new science proves what the zebra community has known for years: our symptoms are deeply connected.

A massive medical record study found that people with endometriosis have roughly 7x higher odds of also being diagnosed with an Ehlers-Danlos Syndrome. Additionally, a massive international hEDS survey revealed that 18.5% of hEDS patients report an endometriosis diagnosis.

So, what is the hidden cellular thread linking our loose joints to pelvic pain? The answer comes down to "molecular scissors." ✂️🧬

The Science: Meet the MMPs

Our bodies naturally use enzymes called Matrix Metalloproteinases (MMPs). Think of them as tiny cellular scissors that cut through the extracellular matrix (the scaffolding holding our cells together) so the body can remodel tissue.

In both hEDS and endometriosis, these scissors seem to be running completely unsupervised:

• In hEDS: Laboratory studies show that skin and connective tissue cells from hEDS patients can secrete up to 53 times more MMPs (like MMP-1 and MMP-9) than normal, while lacking the natural "brakes" (inhibitors) to stop them. This means our scaffolding is being constantly broken down faster than it can rebuild, leading to systemic joint laxity and tissue fragility.

• In Endometriosis: For an endometrial-like lesion to survive outside the uterus, it must aggressively cut its way into pelvic tissue to anchor itself. Lesions rely heavily on elevated MMP-2, MMP-3, and MMP-9 to clear a path and invade.

💭 The Big Hypothesis: A systemic genetic glitch or lack of cellular "brakes" on these tissue-degrading enzymes might simultaneously weaken connective tissue (causing hEDS symptoms) while giving endometrial lesions a friction-free pathway to invade and adhere…

What were you diagnosed with first?

Endometriosis, hEDS, or something else? 👇🏻

Looks like a dream… for everyone without POTS
24/08/2026

Looks like a dream… for everyone without POTS

WANTED: for crimes against collagen
24/08/2026

WANTED: for crimes against collagen

Have anyone tried paddle boarding? 🦓🫶🏻
21/08/2026

Have anyone tried paddle boarding? 🦓🫶🏻

🚨 They told me to "stand for the judge” 🚨 … my POTS said absolutely not. I was in court today, and let’s be honest: the ...
20/08/2026

🚨 They told me to "stand for the judge” 🚨
… my POTS said absolutely not.

I was in court today, and let’s be honest: the legal system is built for people with working collagen.

Trying to survive a court date with hEDS and POTS (plus a sprinkle of undiagnosed ADHD) requires serious strategy.

But guess what? Strategy wins cases. And let's just say, rogue landlords don't always get away with it 😉

If you’re heading into a legal battle, an employment tribunal, or any situation where a disability may put you at a disadvantage, remember - you have the right to ask for reasonable adjustments.

Here is what saved my joints (and my sanity):

📧 Mediation via email
🛗 Lift Access
🪑 Staying seated during the hearing (I also sat down during the airport-style security check)
🚘 Car parking on site

RAISE YOUR ELECTROLYTES, PEOPLE 🥂
Here’s to THE END of this absolute fiasco… and, hopefully, the POTS flare of the century.

Tell me, what are YOU celebrating today? 🦓🫶🏻

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