Emily Goss

Love nature, arts & crafts, community, gardening, books, #SciComm, writing & play. CIADISH magazine

[Laura Elliott @TinyWriterLaura]

absolutely lovely to do this interview for the excellent Ciadish and @BarrowMember!

click through to read me talking about Awakened, writing, capitalism and disability @angryrobotbooks

https://t.co/GbGpzlTyOs

[Jeannie Di Bon @jdibon]

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 to go.

89% of participants with EDS feel clinicians had been disrespectful or unprofessional toward them. Another 92% said they had felt invalidated.

We must keep going to improve this.

[Jeannie Di Bon @jdibon]

Excited to join @ehlersdanlosuk next week.

[Jeannie Di Bon @jdibon]

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 symptoms over the years. They are serious.

How on earth could any medical professional say this is psychosomatic? We still have a lot of work to do in education & awareness.

[Emma Mitchell 💙 @silverpebble]

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 🌿

[Leslie Tate (he/she/Leslie)✍️🌈'*•.¸♡ ♡¸.•*'⧖☮🙏 @LSTateAuthor]

AUTISTIC ALICE https://t.co/Y77XxdG8l3 @tattooedselkie @RegretteRuane @quietste @MAHenry20 @mspaulsonellis @SusanSage @UofGWriting @LovecraftLuci @jdizzlestewart @BarrowMember @christienewport @neelim_d @MSClementsbook @RosemaryGemmell @gilleanmcd @Polly0liverr @Making_Fiction

[ThePOTSPostman @ThePOTSPostman]

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.

[Jeannie Di Bon @jdibon]

“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 isolation. These dysfunctional compensation patterns develop over time.

You start to walk differently, run differently, stand differently - all to make up for Hypermobility”.

Kat Nasseri, Pelvic Health Specialist - extract from Zebra Club talk

[Katy W @SylphSea]

‘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 @JJClaptonWrites

@barrowmember
https://t.co/6NsYlP6pIp...

[Jeannie Di Bon @jdibon]

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?

Were you told fatigue was a symptom?

[Emma Mitchell 💙 @silverpebble]

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 love. Merry May Day🌿-some posies my daughters made 8 years ago:

[Emma Mitchell 💙 @silverpebble]

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

[Emily Goss @BarrowMember]

@AzureXiong @ThePOTSPostman Are you familiar with MCAS symptoms? That all sounds familiar (I have MCAS) https://t.co/LIlfh7wFQS

[Jeannie Di Bon @jdibon]

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 tissue disorder, which means the ‘glue’ that holds my body together is a little too stretchy.

🦓 That affects my joints, skin, digestion, and sometimes even my heart and nervous system.

🦓 It’s different for everyone, and it’s not just about being flexible.

Save this for the next time someone asks, ‘What’s EDS?’ Or do you have a version we could also use?

[ThePOTSPostman @ThePOTSPostman]

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.

[SEDSConnective @SEDSConnective]

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 #Neurodivergent

[Jane Green MBE FCCT connective 😶 @JGjanegreenMBE]

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 your own experience and trusted to speak for yourself without pressure or other's purpose

Autonomy is about having the freedom and control to express that knowledge and identity authentically

➡️ Epistemic justice protects your right to be respected as your own person
➡️ Autonomy protects your ability to say it for yourself if you want to and at your own time

Epistemic justice cannot exist without autonomy and autonomy ensures epistemic justice

The World Health Organisation (@WHO) recognises the right to bodily autonomy and integrity as a fundamental human right.

#autonomy #EpistemicJustice #Equity #neurodivergence #trust #SelfDeclaration #diagnosis ♾️