Equality is fairness Equity is access Autonomy is respecting the right to self-declare or not No one has the right to declare diagnoses on behalf of others. Doing so denies autonomy and violates epistemic justice which is the right to be recognised and respected as the expert of

The medical model needs to move beyond “exclusive” diagnostic categories & traditional boundaries between body/brain leading to siloed healthcare/education Social model needs to accept the medical need for a diagnostic pathway, support mgt. #CommunityVoice #Hypermobility

Storytelling is a tool for knowing who we are and what we want, too. If we never find our experience described in poetry or stories, we assume that our experience is insignificant. Ursula K. Le Guin #storytelling

You’d never know it from the outside, but someone with a chronic illness can hold a conversation, smile, even laugh…all while simultaneously fighting a battle inside their body. Brain fog, tachycardia, fatigue, dizziness and more. We get real good at pretending we’re okay.

Ehlers what? Remind me what EDS is? Yes it’s EDS / HSD Awareness Month. It’s that time where we all try to explain this condition to people. It can be a struggle to explain because let’s face it, not many people have even heard of it. Here’s how I say it: 🦓 It’s a connective

Bealtaine or Beltaine, also known as May Day (1st May), marks the beginning of summer in the pagan, Gaelic & traditional rural calendars. It's marked with Maypole dancing, bonfires, performing fertility rituals (👀) & by making posies and leaving them at the doors of those you

There are now just 2 spaces left on this workshop. Last chance to join ✒️🌿👇

Emma Mitchell 💙 Saw this Morris troop with a man dressed as a pigeon, yesterday

When I was diagnosed with EDS, no one mentioned fatigue. Years later, I got a CFS diagnosis. Turns out in one research study, three quarters of EDS patients reported dealing with severe fatigue. Why isn’t this talked about more at diagnosis to help patients plan and prepare?

POTS is way more than just a fast HR. Sure tachycardia is the hallmark symptom but once that’s managed you realize how much more it affects. Blood pressure, blood flow, digestion, temperature regulation, cognition, the list goes on. It’s a whole-body disorder.

‘an exciting and thoughtful YA sci-fi story about two talented young men ….. with authentic #disability representation’ #booksky Ciadish reviews A Stage over Ruthless Stars by JJ Clapton @barrowmember ciadish.wordpress.com/2025/05/03/a...

“When we have someone with Ehlers-Danlos or hypermobility, the collagen changes make those supports of the pelvic organs weaker. The pelvic floor has to work even harder, which is why pelvic floor dysfunction is so common in this population. We can't treat the pelvic floor in

AUTISTIC ALICE leslietate.com/2025/05/05/joa… @tooriekep.bsky.social @RegretteRuane @quietste @MAHenry20 @mspaulsonellis Susan Sage UofG CreativeWriting @LovecraftLuci @jdizzlestewart Emily Goss Christie J. Newport - Author Neelim Dundas M S Clements Rosemary Gemmell Gillean McDougall 💙 @Polly0liverr Ｍａｒｋ Ａ. Ｋｉｎｇ

Go wild this June with #30DaysWild 2025! 🐝🌼🌳💚 Ready to explore, discover, and connect with nature? Join the adventure—30 days, endless ways to get outdoors and feel good! Let’s make this the wildest June ever! 🔗Sign up for FREE wildlifetrusts.org/30dayswild

I'm recovering from a breakdown at the moment so things have been pretty tough- if you could spare a few moments to RT my post about the prints of my photos in my Etsy shop (previous tweet) it would help to maybe put my shop in front of a few extra eyes. Thankyou so much 🌿

Two of my complex CCI patients were told their disabling symptoms were anxiety 😬. Unbelievable that both of them were told their seriously disabling symptoms were caused by anxiety or were psychosomatic at some point by doctors. Now l've seen and heard all about their

Excited to join Ehlers-Danlos Support UK next week.

May is EDS Awareness Month – a time that can be deeply personal for many of us. For some, it is a month to be seen & heard. It can offer us a moment to reflect on how far we’ve come and how far we still need to go. Patient research is showing us that there is still a long way

absolutely lovely to do this interview for the excellent Ciadish and Emily Goss! click through to read me talking about Awakened, writing, capitalism and disability Angry Robot Books ciadish.wordpress.com/2025/05/20/int…

I pre-ordered this book and it's just arrived - looks absolutely fantastic, easy to read lots of great info and advice And if you pre-order before 29th (publication day) Germaine will give all royalties to ME Research UK (just let me know)