Delyth Owen

Next Tuesday I will be sharing my story with a group of GP registrars as part of their training. It feels like the culmination of all my advocacy work so far. To be in a room with the people who can REALLY make a difference to the lives of pt with FND. Instilling compassion and reducing stigma #fnd

Apparently even the Egyptians had knowledge of functional illness!! Does anybody have more info about this??

YES! This is exactly it.

This is fascinating! Will have to watch. Has also inspired me to create a new slide “depictions of FND in popular culture” for my upcoming lectures. Might help to build up a case for epistemic stigma and why it’s present.

One thing that keeps popping up in all these damning reports about NHS (ockenden etc) is a lack of compassion. Could we conclude that this is someone connected to a rise in far right views??! The effect of reform, trumpism, musk?!

#nhs #trump #musk #compassionfatigue

This is far too binary?

I just hid my symptoms from then, as much as I could. I told everyone around me to never call an ambulance. For years I lived on welfare benefits trying my best to live some sort of life. We all deserve better.

I like the idea of reframing shame, taking hold of it and making something useful. All the healthcare professionals who tried to shame the FND out of me - I guess they were trying to do the same in their own way. If we can make her embarrassed maybe she’ll stop? So maybe intentions were good?

Ian Higginson, RCEM's Vice President, posts: "Called out NHSE’s narrative that it’s possible to provide safe care in corridors. Used strong language putting our statement together, reflecting RCEM members’ and colleagues’ strength of feeling on this matter. Degree to which corridor care is normalised is dumbfounding." There is an image of an Independent website news story with the headline: 'Top A&E doctors criticise ‘dangerous’ suggestion that corridor care can be delivered safely'.

We have made it clear that the NHS temporary escalation spaces (TES) guide is "normalisation of what is an unacceptable and dangerous situation".

RCEM Position Statement: tinyurl.com/rcemTES

RCEM News: tinyurl.com/rcemNews1612

These things are great! Saves me so much labour. Thank you 🙏

Thank you 🥰

I’ve had many therapists over the years and this type of working feels very alien.. but a breath of fresh air!

Do you want your therapist to share details about themselves? I’ve just had a profound realisation that I love the fact I know nothing about my current therapist. I feel this is the best therapeutic relationship for me right now. Any thoughts?

True. Great counter argument. Still not buying into this following train tho sorry 🫣

But don’t you then get a load of followers who aren’t interested in your content or voice? What are we here to do? Gain followers or have like minded conversations. I’d rather have 10 followers who engage with me than 100 that are only following me because I follow them. 🤷‍♀️

A dentist, a GP, a therapist, Avocados, Bertolli olive oil and pine nuts #daydreaming

Thanks for sharing. It’s not fair that alongside a debilitating illness we also have to fight a broken system that tells us it’s not real. Leaving us doubting reality itself. You’re doing amazing. Gratitude got me through too.

Hopeuflly it’ll be abolished! Always felt it was reductive at best, but at worst possibly misleading. Another attempt to separate mind/brain?

Following a successful lecture in September, I have been asked to come back and speak about FND, my experience, lack of treatment pathways + how I recovered. Consequently every nurse graduating from @bangoruniversity.bsky.social from now on will have a basic understanding/ compassion for #FND 🙏

I've put together a starter pack for the FND science community.

Please repost to share the link and do let me know of folks I've missed so I can add them to the group.

Thanks everyone 🙏

🧵 1/

Aurora over the ocean

Pegasus at sunset

Husky in the snow

A close up painting of Colorful tulips

Hello! I’m Shae and I’m a digital artist who only uses the oil paint brush. I have a print shop and might get into charms and other stuff. I’m a visually impaired FND advocate and my main career is as a paralegal.

I hope you can too. During my initial diagnosis I didn’t really have access to an FND community. Hopefully we can all help to ward off this baggage for you. The system does not support FND that’s the biggest problem - not FND patients.

Thanks so much Tom, Will give this a read!

Thank you. I think I’m finally starting to believe that I have nothing to be ashamed of. Isn’t therapy great 🙂

I think I may create a slide on this for my next GP trainees lecture. Seems like something they should be aware of!

Yea that’s it x

I had no idea the extent of it until I started my advocacy work. After every talk/ lecture I can spend weeks or months feeling vulnerable and depressed. Turns out the shame was still ingrained. My mind wants to speak up but my body still wants me to stay quiet!

I’m currently unpacking my medical trauma with a new therapist. Biggest theme - I blamed myself for the mistreatment I suffered. I was self-stigmatising. I believed I was faking, an attention seeker, not trying hard enough to stop my non-epileptic seizures. Why do we do this? Blame ourselves?

During my dx of FND I was shamed, dismissed and told “this is something that happens to women sometimes, now you know it isn’t real it will likely stop”. The medical trauma this induced forced me into the shadows, vowing I’d never bother a dr about my seizures again.