Madelleine Müller

The power of self-witnessing in chronic illness My world is small, I’m very isolated and not many people see what is really going on beneath it all. Self-witnessing can be a way to alleviate the feeling of being invisible.

Living with #chronicillness is like an iceberg – people only see the very tip of it, and rarely (if ever) see everything going on beneath it: All the hard work we put into managing and navigating our physical, emotional, spiritual and mental bodies. www.bedperspective.com/p/the-power-...

I still get nightmares about hospitals where they make me do stuff I can't do. Medical PTSD is real and doctors should be educated on how to avoid this. #mecfs #pwme #longcovid #chronicillness

Navigating creativity with chronic illness Chronic illness is what opened my creativity, but it is also what shut it down. Here’s how I navigate creativity while living with chronic illness.

Creativity requires a lot of brain power. When I got ill, I would get myself into a creative flow and not long after my brain would be on fire, I would have acid running through my veins, and the next day I would completely crash (PEM). #pwme #chronicillness

www.bedperspective.com/p/navigating...

Oh yes

I spent years immersed in wellness culture as a yoga teacher and there is this idea that you subconsciously choose your illness. But it blames patients for their suffering. It paints a picture that we’re in control of our bodies and just aren’t working hard enough to recover #chronicillness #pwme

Spot on!

Thank you for sharing 🌸❤️

It astounds me when friends & family - those who say they love me - vote for people & policies that cause me direct harm.

When this harm comes to fruition (as it always does) and I point it out? It’s always “let’s not talk politics”

It’s not “just politics” to vulnerable people. It’s life & death.

“Don’t let illness define you,” they say. But this could be problematic. We are often told to not let illness define us. But is this always possible?

The saying “don’t let illness define you” has a sub-text that disability is bad. But the fact is that able-bodied people have a lot to learn from us. We can be more empathetic, more compassionate, and more nuanced in our thinking… #chronicillness #mecfs #pwme www.bedperspective.com/p/dont-let-i...

Very true!

Thank you so much ❤️🌸

Thank you 😊

#ChronicIllness means spending time in dark places, often for long stretches before breaching for air. And while it’s a difficult time, I don’t think it’s wasted. We may surface with a deeper understanding of what it means to be human.

#pwme #mecfs #longcovid

You’re always welcome 🌸

🌸❤️ All of that indeed!

Living with #disability / #chronicillness often comes with experiencing trauma regularly. Trauma can either be caused by individuals’ behaviour towards us or by institutional neglect, harm or disrespecting of our needs. It’s time society recognises the impact trauma has on us #mecfs #pwme #loncovid

What it’s like to live with severe ME I have lived with ME (also known as ME/CFS) for over twelve years now. In 2017 it turned severe. Here’s what it’s like.

Then there’s the general pain of exhaustion. Every person with #MECFS, despite the severity, will feel this. This is not something an abled person will ever have felt, even at their most exhausted. www.bedperspective.com/p/what-its-l... #pwme #longcovid #chronicillness

👋🏽

Stigma occurs when the story of those with lived experience differs from the story being told — and when this ‘told story’ devalues their identity. That’s why it’s important to listen to those with lived experience.

#pwme #mecfs #chronicillness #disabilityjustice

I’d love to be added 🌸

Count me in

That’s a great response!

Cool!

Why “You Don’t Look Sick” Isn’t a Compliment:
1. #Chronicillness isn’t a visual condition—our struggles happen on the inside of our bodies.
2. Telling someone they don’t look sick invalidates their reality.
3. Just because I don’t look how you expect illness to appear doesn’t mean I’m not suffering.

Thank you so much 🌸❤️

This is encouraging! Especially since BC007 didn’t pan out. #mecfs

Great imagery!

What chronic illness taught me about creativity I feel like I now have a PhD in creativity. Chronic illness has taught me how I can create without the chaotic magic and under sub-optimal circumstances. This is what I’ve learnt.

Self-help literature tells us to visualise our goals and they will manifest. But research has debunked this idea. Instead, visualising the process or the steps to get to the goal is a lot more effective.

Here is what #chronicillness taught me about creativity

www.bedperspective.com/p/what-chron...

Thank you!

I’d love to be added 🌸