There are so many people, traumatized by healthcare.

And there's so little we can do. Therapists operate in the same system that caused the trauma. They are subject to the same systemic bias. Chances are you first find many therapists that add to the trauma

1/ before you find the right one. If that ever happens.

Plus, so many of us with severe chronic illness are way too sick for therapy or to even talk to someone. Housebound people. Bedbound people, alone in semi-dark rooms, severely ill and suffering. 2/

Chronically ill people are often left by friends/family/loved ones. But it can also be the other way around. When becoming chronically ill or declining, we're often forced to cut through our friendships. 1/ Every time my health declined I couldn't maintain all previous friendships. Some lasted in different ways. But that can be very hard when you're at the level of not being able to tolerate visitors. 2/

Thinking about that doctor (one of the many) who brought negative test results as good news while I was chronically ill and couldn't find out what was wrong with me. I started to cry and she said "if we can't find anything, maybe you should start to think there isn't anything" 1/ At that point I had already lost my bladder to interstitial cystitis with mastocytosis and lots of inflammation. And then other things/systems in my body started to get sick. But I had no idea what was going on. 2/

People often think that #chronicillness has one defining moment where you get diagnosed and get educated by a doctor about your illness and your whole life changes in that moment, and now you have to grieve and adapt.

But most of the time that doesn't happen. 1/ Lots of chronic illnesses don't get that moment. Getting a diagnosis often takes years or decades. Or it never happens. Or (first) you get lots of wrong diagnoses with horrible consequences.

And if you finally get the right diagnosis from a doctor, it often isn't a surprise. 2/

Having a carer because of disability/chronic illness means your life depends on a whole other person with their own set of views, thoughts and beliefs about you, your illness/disability and the way things should be done in your life. Or different people with conflicting views. 1/ That's often a taboo to talk about. Because society wants disabled people to be greatful and quiet.

But other people come so extremely close. You have to give up lots of personal space. Carers need to be aware of that and what this means for someone. 2/

When I talk about #MedicalGaslighting I sometimes get well-meant responses like

"don't let it get to you" "you're valuable"

But this isn't about what some random people think. This is about people who have an enormous amount of power over you, your body and your wellbeing. 1/ Medical gaslighting has awful psychological + physiological consequences!

These people decide whether you get treatment (and/or benefits) or not. Or they can give you the wrong treatment because they don't understand your illness and/or don't trust your judgement. 2/

I once saw a doctor complain about people making their #chronicillness their identity. That doctor tells a lot that she's a doctor, whether it's relevant or not.

People make things their identity all the time. But when some groups of people do it, it's suddenly a bad thing. 1/ When chronically ill + disabled people do it, it's judged by a different set of rules, ableist rules.

I'm a hairdresser. I'm a footballer. I'm a doctor -> fine

I'm chronically ill -> nooo don't let that be your identity

🙄🙄🙄

2/

I feel like physical suffering is often overlooked when talking about #chronicillness. Most #MEcfs severity scales don't even capture this.

For me, the difference between a good and a bad day isn't in functionality, but in physical suffering. 1/4 I had two big and permanent declines in functionality. My functionality is determined by my OI symptoms and those are always the same in between declines.

But I also once had a decline purely in physical suffering. I was already 99% bedbound, but a course of steroids 2/4

On this day 3 years ago a vax triggered a major declining of my illnesses.

Something I've often heard over those years is that this is simply the benefit-risk balance. And that the benefit outweighs the risk. While completely ignoring the things it led to for some people. 🧵⬇️ Of course, vaxes brought many good things. Duh.

But why do you feel the need to tell me this after I just told you that my life completely fell apart + I became 99% bedbound?

We don't need to change the good things. We need to change the bad things. So let's talk about that. /2

My friend with the #MEcfs version of #LongCovid declined after she had to do an at home nasa lean test for #POTS. It's awful how she lost her precious baseline and is in bed now for the biggest part of the day 💔

I think a lot of doctors don't understand this. They think... 1/ "you have to, it gives me information" while not understanding what it means to lose even more if you already have so little.

I think a lot of information is already in the patient's story. Listen carefully to their symptoms.

Think a 1000 times before you put someone in... 2/

Imagine being very sick and going to the hospital because you need help. But you have #severeME and they don't follow scientific guidelines + don't believe in your illness and you enter a nightmare instead.

This is happening to #SaveCarlasLife and lots of others right now!

1/ They are in hospitals, exposed to everything that makes their illness worse.

You must understand that having very severe #MEcfs means being bedbound and that every noise, light, touch or even the presence of someone else causes enormous physical suffering. 2/

#ExposeMENow

Meghan is spreading a lot of misinformation because she is talking about things she has no knowledge about.

She has no knowledge about autoimmunity. She doesn't know that autoimmune diseases affect more women than men. She doesn't know that an important subset of those

1/

https://twitter.com/MeghanEMurphy/status/1743757673311715432

diseases are probably autoimmune. Because of internalised misogyny, she blames it on personality. While there's nothing that points in that direction.

Also, how do you take your health into your own hands when your immune system attacks the body's own healthy components. 2/

I think people can't grasp what it means to be bedbound + in physical suffering 24/7. Yeah when they hear about it they're a bit shocked and feel sympathy. And then they move on and forget. But do remember, when you're in the supermarket, we are suffering in bed ⬇️

#severeME etc When you're talking to your loved ones, we are suffering in bed. When you are at work, we are suffering in bed. When you're sleeping, we're probably awake and suffering in bed. When you're going out for a drink, we're suffering in bed...

⬇️

Last month I posted something about my severe chronic illnesses on fb. That was a first. I don't have many people there, just some family members and friends from the past. Most of them have no idea how sick I am. I wanted them to know. It was both a good + a sad experience.

1/6 First the good part: it was a bit overwhelming. I got so many sweet and sincere messages from people who had no clue and genuinely wished it was different for me.

But it also had something very sad. Because after a day or two, the messages stopped...

2/6

Some things I've learned when my #dysautonomia #MEcfs became severe ⬇️

1. People will randomly pop up saying that they have been bedbound for ... years and now can do ... again. They won't ask anything about my pattern/symptoms. They just tell me that I MUST stay hopeful

🧵⬇️ 2. There is no such thing as having nothing to lose. The less you have, the more you have to lose

3. It's more about the unbearable physical suffering and less about the things I can't do anymore

4. The more severe I become the less credible people (and doctors!) think I am

Many things and illnesses that are wrongly being psychologized by healthcare can simply be explained by #autoimmunity.

Healthcare has a history of doing this while ignoring the most obvious and plausible explanation of autoimmunity.

A list of some of those things 🧵⬇️ 1. "It affects more women than men so it must be stress" 🚫

So it must be autoimmune you mean! Almost 80% of people suffering from an autoimmune disease are women. It's in our hormones and genes. Our immune system has a higher risk of attacking the body's own healthy components.

There was a time when I didn't speak much about my illnesses because society tells us not to. I was afraid that people would think that it was my identity and they consider that a bad thing. And I definitely couldn't imagine tweeting about it. But that's just ableism🧵⬇️ Then my best friend @midheavenmoon got #LongCovid. As a new sick person she naturally spoke about it and how it affects her life. And I was like what am I doing. Why do I keep quiet about something that is so decisive in every aspect of my life. Being ill IS my identity.

Most people who have an autoimmune disease are women. So there's so much key information in the fact that most people who suffer from post viral illness are also women. Yet society chose to ignore the obvious and blames it on things like anxiety. Sexism is stronger than facts 1/4 Medical research was always focused on men while we have significant differences in how our immune systems work. Differences that could provide us with so much information about autoimmunity in general. But nobody cares because of sexism. 2/4

If you have #LongCovid or #ME and consider the use of steroids, please be very careful. It can help some people but for other people, like me, it can make the symptoms way worse. I thought I had nothing to lose. Well it turned out I had lots to lose... 1/ I had a short but very high (500 mg) methylprednisolon course last november for severe and progressive #POTS. The days I took it were some of the most horrible days of my life. Basically, my mind went into an overactive state in a body that I couldn't use. 2/

On this day a year ago my life changed a lot. I got my first covid vax and overnight my #pots worsened to the level that I can't stand or sit anymore. I already had pots and probably #mecfs so it wasn't the first day my life changed a lot but from that day it's unbearable. 1/ It all started on a random day in '13 after a minor medical issue. Then it was stable for like 2 years and it worsened a lot one week after a simple kidney infection in '15. Then I became 90% bedbound but still could have some fun and do things in the other 10%. 2/

Ik word zo boos als mensen doen alsof we jongeren opofferen voor ouderen/kwetsbaren. Ik ben één van die kwetsbaren en voor corona had ik ook een ander leven en zag ik ook graag andere mensen binnen mijn kunnen. Nu blijf ik binnen zodat jij kan buitenkomen.

https://twitter.com/Knack/status/1467069373269561345

Maar aangezien ziekte mijn al hevige klachten blijvend erger kan maken kon ik het risico niet nemen. Toen de bubbels er waren had ik er bewust geen, 'vrijwillige' maar noodgedwongen keuze. Toen de cijfers zakten dacht ik misschien kan ik op de maatregelen gaan leven ipv eronder.