Chronically Bendy: the EDS diaries

09/06/2026

Happy Tuesday 😴

08/06/2026

Who else sees zebras absolutely everywhere now?!

02/06/2026

I’m so ANGRY about the Mackenzie Shirilla case, and not for the reason most people are talking about.

For a time, people seriously suggested that POTS caused her to “black out” while driving at around 100mph. As someone who actually lives with POTS, that claim is infuriating.

POTS isn’t a magical get-out-of-jail-free card. It isn’t a convenient excuse to explain away reckless behaviour. It’s a debilitating condition that can strip people of their independence, careers, social lives, and sometimes even their ability to get out of bed.

Many of us spend years fighting to be believed by doctors, employers, friends, and family. We deal with constant misinformation and people dismissing our symptoms as anxiety, laziness, or exaggeration. So when POTS is used as a defence for something like this, it doesn’t just affect one case - it affects every person living with the condition.

The reality is that POTS can be devastating. It can leave you exhausted, dizzy, fainting, housebound, and struggling through everyday tasks most people never think twice about.

What it shouldn’t be used for is rewriting accountability.

People with POTS deserve understanding, accurate representation, and proper medical care - not to have our condition dragged into criminal cases as a convenient explanation for the inexplicable.

POTS has taken enough from us already.

29/05/2026

Update: the lights are too bright, but I have IV fluids and awaiting a CT scan.

Hoping so hard that I have a nasty infection and not a ✨surprise✨ EDS rupture…

Tell me what to watch on Netflix to distract me?! 🙏🏻

29/05/2026

FFS 😭

28/05/2026

Wise words from Blcksmth 🫶🏻

27/05/2026

What are your cardiac symptoms? ❤️‍🩹

Two new papers were recently published on cardiac involvement in hypermobile Ehlers-Danlos syndrome (hEDS)

27/05/2026

Worldwide medical gaslighting: 0
EDS awareness: 1

26/05/2026

My nervous system left the chat at this exact moment 🥴