Thread by @AbyssPearl

I'm so tired of being told : you need to change doctors, find someone who will listen to me etc. Do you know know what it's like in reality ?
First of all. There's no one available. They don't take new patients. Appointments are in months or years. Second money. Third if you

have severe mecfs or very severe you can't go and just find a new doctor. 4. i did that for years. No one listened. No one. Or if one did they had no Idea what to do or put me in danger or sent me to other doctors who treated me like not a human. 5. Each travel to another apptmt

undergoing painful exams being gaslit for years and treated like i wasn't sick it was not enough my pain concerns and words never mattered. 6. The crashes after each apptmt. Physical pain. Suffering. Until being bedbound for weeks and months. 7. The mental toll of all of this and

8 : Mistreatment neglect abuse TRAUMA. 9 : severe and very severe me. Do you think they care when finally you can't go anywhere? "If you don't come that's it" but i can't even sit up i'm- "that's it works bye.
10 : too sick too ill to do anything cause we were not heard for years

Not everyone has access to what we need. That's the point.
I've been going through this for two decades. Stop telling to just go and find a doctor who'll listen to me. It's hurtful. What do you think I did for years and years and years ?
It's just erasing all my journey and

fight to survive at this point, and everything i suffered from. Trauma and multiple attempts to get any help. erasing everything i went through that shouldn't have been done and said to patients by the medical professionnals. Especially. Especially to (very) severe me patients.

If it was that simple. I wouldn't be at this point. Stop puting the blame on people. You should know better about how we're treated by the whole medical world and by society.

I can't hear this anymore.

#mecfs #pwme #severeME #verysevereme #pots #MyalgicEncephalomyelitis

Do you even understand that every appointment is what made me go to moderate to severe and then very severe ? That the multiples numerous attempts to every appointment is what ruined my physical health but also mental health. Do you understand that listening doctor after

doctor telling you litteral non sense, each one saying a new ridiculous and insulting thing is what contributed to ruin my mental physical health and what took me everytime a big chunk of my will to even wonder if this life was worth living ?

I fought so hard to keep myself alive. I deal with a lot of issues chronic illnesses pain. Every day is a fight a battle a suffering eating drinking sleeping breathing sit up listen see just being here HURTS.

being constantly dismissed. from being a CHILD. A teenager. A young woman. The misogynie.
Not being listen to, for +15/20 years. neglected to the point my conditions were worsening each month. And no one cared blamed everything on me while I was supposed to excel in school,

appear happy and like everything was fine and my pain was nothing.

To the point of being yelled at ashamed insulted when my body STOPPED me.

To the point they started carring to give me something because I'll have to work. So my awful SUFFERING during my school years and

uni years was not worth of any help cause l wasn't contributing to the fucking country or what
When I was working being severely underpaid doing 5 jobs in 1 and studying and bleeding out it Wasn't enough to help me ?

I've been neglected to the point I ended up bedridden paralyzed. For months. Going through the worst pain of my life.

even having 3 doctors 2 hospitals I almost fucking died and they blamed it on agoraphobia and anorexia which I had none of those 2 conditions.

Do you know what I actually had ? severe mecfs (that's why i was fucking housebound for years because they didn't listen to me and they just fucking say it's agoraphobia) and gastroparesis which mean my fucking stomach couldnt digest for fs. It was not working so OBVIOUSLY

I was fucking losing weight and fucking dying because for months they did NOTHING NOTHING NOTHING and they had the Audacity to Say it was anorexia. (i am puting no shame AT all on people with anorexia what ANGERS me is the misdiagnosing cause they didn't care AT all to speak

to me and try to understand what was going on. My whole body was paralyzed i didn't fucking took a shit for 2 or 3 weeks. Doesn't seem fucking like paralysis to you.
It took 3 fucking rides to the hospital 2 stays

what did they do ? Treat me for other issus clearly visible that i contracted during my first hospital stay ☺️☺️☺️☺️ and then THREATHEN me with bullshit to put me in the Psych Ward.

None of my treatments followed for illnesses that i have that are known.

This is how you are treated. You reach for help you are dismissed mistreated abused. You end up needing help you'll be dismissed mistreated abused. In psychiatry. Where you are literaly abused. And not cared for. Your not a person anymore. It was hell.
This is what happens.

Mecfs is not taught in medical schools doctors dont know about it and if they do they actually dont. They'll say it doesn't exist or think you're crazy. They'll blame you. They'll expose you to things and "treatments" that will ruin your health even worse.

This IS what HAPPENS

At this point and listen carefully : I would rather DIE than go back into a fucking hospital.

This whole experience made me not fear death anymore. Do you understand that?

What I fear is the TORTURE AND ABUSE you go through as an me person. I'll not let this happen again.

So don't tell me to find another doctor. Don't you think I don't already know this ?
Fact it there's none. If there are I can't go to them. And what will they do ? Nothing accessible.

If you want to help people with (severe me) start to learn about the reality of what they go

through and live with everyday.

My priority is preserving my health. No more puting my life at risk for 0,000003% of just being believed.

#MECFS #pwME #medicalneglect #medicalabuse #medicaltrauma #ChronicPain #severeME #myalgicE #emsfc #verysevereME #chronicillness #pots

(not to mention I have other chronic illnesses like migraine allergies endometriosis pots etc. Do you think i'm enjoying myself ? No. I'm fighting every single hour of my life. If I was lazy I would have already died.)