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

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...

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

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.

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...

#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

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

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

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.

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

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...

Decision fatigue is real. Especially when living with brain fog-enducing chronic illness. Deciding on this and that is exhausting when your energy is minimal, and your brain has slowed down.

#mecfs

“Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.” — Alison Kafer

I wrote a piece about crip time and redefining productivity:

www.bedperspective.com/p/embracing-...

#disabilityjustice

Any #mecfs peeps here that I can follow?

Hi chronic illness and disabled folks! I’m Madelleine and I write and sing about chronic illness and creativity. My new album will hopefully be out in spring/summer
2025.

I also write on Substack with articles and meditations and tips for your creativity: www.bedperspective.com