Sam (Flower Girl) Jennings Oh wow. Wow. Wow. Every single time someone says a version of that to me I always imagine I’m going to come back with a really smart answer. I never do.

On a bus
Man:if you don’t mind me asking how did you end up in the 👩🏻‍🦼
Me: when you ask ppl that you are potentially remembering the most traumatic experience of their life
Man: I only want to know because it allows me to think “there for the grace of god go I”

DON’T DO THIS✋🏻
🚮

He had all these things going for him - and he still ended up dead. His expertise ignored and his agency taken away. Because the doctors wanted “control” and thought they knew better. /15

Before you judge them for being afraid to access healthcare - consider the case of Prof Patel. A man who was a doctor himself, an expert in his condition and who had a spouse who was also a doctor advocating on his behalf. /14

It’s a cruel and unfair choice and one of the reasons MANY high risk patients refuse to go to the hospital until they’re literally knocking on death’s door. They aren’t being stubborn or difficult - they’ve likely been harmed in the past and are terrified it’ll happen again. /13

What isn’t unique is the experience of having a rare disease or chronic illness and having medical staff not listen to you. Many disabled individuals feel unsafe in the hospital because they’re giving up control of their bodies - and their needs aren’t always respected. /6

theres literally been more media coverage of a fucking shirt with a different colour flag than there has been of the un saying the British government has caused disability benefits deaths. WTAF man. I'm so done.

But it's the sad truth that many of the people who you think are friends will drop you like you're a bag of dog shit when you become disabled.

The sad truth is people do not want to face the realities of chronic illness. The vast majority would rather write us off as liars, fakes or failures than accept that some illnesses have no fix. They would rather us pretend their behaviour is acceptable & suffer in silence. /11

That said I find it easier to steel myself against various professionals - it’s much harder when it comes from friends and family. From people who should love and support you unconditionally and have your back. /7

When it comes from doctors and HCWs it’s normal to feel frustration and deep despair. After all - these are the people you’re relying on to make you better. If they don’t believe there’s anything wrong with you then you aren’t going to get much help. /6

You will be told to try harder, asked repeatedly if you’ve considered this fix or that potion. You will waste tons of energy defending yourself and explaining why whatever solution being proposed won’t actually work for you. It’s exhausting. /5

The reality is people will gaslight you. They will doubt you, disbelieve you & talk down to you. They will offer “suggestions” under the guise of helping - but those suggestions are generally twinged with an attitude of ‘I don’t believe it’s as bad as you say.’ /4

If you’re newly disabled - whether by Long Covid or any other chronic illness - you need to prepare yourself for gaslighting. Doctors, HCWs, friends, family…. You will be surprised how much it’ll happen. A 🧵on how to cope, why it happens & finding your tribe. /1

In conclusion I get down on my knees and thank the universe for leading me to a partner who doesn’t give a shit about what others think of our medical choices and would never ask me to risk my health for his convenience. I hope this man finds one, too.

“Doctors don’t tell you that they don’t really understand what it means to be in pain all day, every day, for the rest of your life… No one understands what being in constant pain is like unless they are in constant pain.” buff.ly/3UQ6YKW #chronicpain #chronicillness

Adam Fare 🖤🤍💜 Shirley Nseiri If a disabled person goes to great effort to hang out with you, but isn't very talkative, or even falls asleep while hanging out, it's not cause your boring, it's because they like you so much they've gone into spoon debt but to be around you!

If a disabled person cancels on you last-minute all the time.
It’s usually not because they don’t want to do something… it’s because they are disabled and it may be unpredictable.

And trust me, the guilt and shame when it comes to that “sorry I can’t make it” message is huge.

POV: you’re a wheelchair user and the staff haven’t turned up with a ramp, so you’re trapped on an empty train.

The emergency alarm is out of my reach so I have to rely on my shouting skills.

How would you feel if there was a risk of this happening every time you use the train?

I work for the civil service, we're all underpaid, we all have some extremely important aspect of society in our control, every department is one nervous breakdown from going under and life would be dystopia without us, you fuckers have no idea.