The Long Covid Collective

Hello, everyone a few weeks ago I wrote down my story and then it somehow didn’t publish the post, so I’ll do it again now

Hey, I’m Salome 15 years old and I’m from Switzerland. So my English is not very good.

My journey with long COVID started on the 23rd. November 2021. This morning I got up as usual and suddenly couldn’t keep myself on my feet. My head hurt terribly and I was really weak. like with a flu.

At that time, there was still the time in Switzerland when you had to take a weekly corona test at school. However, I decided against taking a PCR test so often because I had respect for the consequences. I also have to say that I am unvaccinated.

The quick test I did at home but then turned out positive. At first I was somehow even happy to have a break from all the stress just before Christmas time. But that has changed very quickly. So the two weeks later, the quarantine is over.

I still had symptoms and they had become stronger. At that time, you were not allowed to go to school as long as you were not free from symptoms for a hole day. So I went to the pediatrician. He first said it was probably a sinusitis and gave me pills. In addition, I had a tone on my lungs, which is why I had to do cortisone therapy.

More weeks have passed and the holidays are over. And I still can’t go to school. My doctor sent me to a hospital where a neurologist worked who is familiar with fatigue.

The usual examinations were then carried out in the hospital, but everything was of course inconspicuous. Since the tests don’t tear anything up, the neurologist told me that I have to slowly build up my fatigue without any problems. She told me to go to school for 2 hours first and then do 1 hour more every day so that I have a normal life again in a few weeks.

But I knew immediately that this would not be possible. I agreed with her that I would first take myself to start to the half-hour break. And it’s a distance. Actually, I thought it could be possible. But it turned out very differently. After two days I had to cancel the whole thing again because I was just getting worse and worse. Everything was too much for me, it was too loud to many people and I couldn’t increase this time at school.

My family and I decide that we cancel the attempt. The doctor was not enthusiastic at all and told me that if I really don’t go to school, I have to be stationary. there they could then set it up and the nurses are able to look for me all the time. My father immediately agreed for me but that was unimaginable. So we decided against it. But since we were then told that they had to report the fold to the youth welfare office, we changed the clinic and also stopped the other doctors‘ examinations.

In the new hospital, the examinations were made new. somehow I immediately realized that something was strange. But I didn’t know how bad it would end.

The doctor told me the same thing. I have to put the school first place. So I started the attempt again and stopped again. I just didn’t manage to sit in the classroom for even half an hour.

We decided that I would go to the children’s hospital for a week. There you could do all the clarifications without having to commute between two places all the time and I agreed with that.

At first, everything was actually still good. But after just one day they told me that I have to go two lessons a day at the hospital school. And in addition, half an hour of physiotherapy would have. It was too much for me. But I was somehow able to overplay my crash. I just realized that I’m not really taken seriously and that’s why it was all the harder for me to just show my symptoms. A serious mistake I know

Another mistake. I laughed a few times too often. Yes, then you could just assume that I wasn’t feeling so bad. Yes, i think they believed me. But it wasn’t that they said yes, you’re not doing well. In the room I was in, I met my current best friend and she was already a really great support for me back then. Whenever I was asked stupidly by doctors and everything, she was with me and confirmed to people that I was not well. Even at night she lay awake with me for hours because I have very serious sleep problems.

Then the first really drastic incident happened. Because my mother has given me some vitamin supplements since the corona infection happened to strengthen my immunsystem, my father felt very bad. I took all this voluntarily and actually even thought that it could do me good if I could take it more often. i mean it was all agreed by doctors and nothing chemical

I found a letter from the youth welfare office in the mailbox. First of all i was completely confused because I have never had anything to do with them. I opened it and it said that my father made a danger report. I was summoned and I didn’t know what was going on. Somehow I noticed his bad face for the first time that my mother apparently wants to make me addicted to tablets. What absolute bullshit is. She only gave me things that was advised by other people affected and most of it was even clarified by a doctor.

Fortunately, the youth welfare office closed my case very quickly after I made my statement there. They only recommended that I go to a clinic. Somehow I felt pushed to do it because I was unsure myself whether it might not be a good idea after all. In addition, my best friend recommended a clinic that seems to be good. But I have to say it’s nothing that specializes in Long COVID. This has been a psychosomatic rehabilitation clinic. But from the children’s hospital and the doctor who looked after me would apparently also have been involved. Even if I didn’t find her very good, I agreed because my father likes it and I was afraid of another report to the youth office.

so i agreed going to a rehabilitation clinic. i had hope for getting better with my light staged long covid. but i mean i dont think its only light staged even if i where not able to go to school on any day. i was the whole time at home. bit i could do other things. for example i found out that i can write on my laptop. so i started writing a book (today i have still very bad long covid but i did it to write a whole book. im very proud to be honest. and i start publishing soon i guess) sorry for switching the topic i stucked in my thoughts

Yes, the day had come. I joined the rehabilitation clinic on the basis of psychosomatic and physical complaints. I was assured that the program was kept very light. Actually, I believed that. But as soon as I got my weekly schedule, my chin folded down.

Little program for the clinic said that I had two lessons of school per day 1 hour of psychotherapy per day plus physical therapies. and of course the time with other childs and doing things like dishes and all. I’m supposed to go right away. I was looking for a conversation with the doctors. But nothing will be changed. After a few days I realized i didn’t work anymore. So that’s how I looked for the conversation. I was just able to prevent such a strong crash. yeah i crashed. but since then i luckly didnt have had bad crashed so fast. i always dealed with the crash in the night and so the next day after maybe one hour of sleep it went a little better.

My program has been downgraded. I was really grateful, I actually thought that I could finally create improvements now. But everything has deteriorated further and further. At school I concentrated for maybe 5 minutes and after that I slept on the sofa for 15 minutes.

It’s just getting worse and worse, even my psyche was completely on the ground. I have had contact with panic attacks and self-harm for the first time during this time. Maybe you can say that I had a slight depression But I also think that it is completely understandable because such a situation especially when you see how the others are getting better and better with their psychological problems and you don’t even move yourself from the place. The fellow patients there immediately noticed that I am not well. With the things we had to help, they took everything from me and that’s why I was very happy. but then the nurses there told the children thaywere forbidden to help me because I had to do these things. I would really be pushed to my worst limits every day and when I say it’s not possible anymore, I have to take the programm further.

At some point I was at a point where almost nothing worked anymore. I couldn’t do the program anymore. It was so that I gave the meals in my room a name. And had exactly 30 minutes of therapy per day.

I then stopped the therapy and left the clinic. Actually, I also thought that it would get better now if I can continue building at home and just slow it down. not like in a clinic. At the exit interview, however, I was told I had to come back in three weeks for another three months. I denied it because I knew that the clinic somehow didn’t know its way around and everything just got worse. When I said that, they told me that they had to make a youth welfare registration for the case. I would have a few days to think about whether it’s worth it to me. Or if I just come back to the clinic.

However, since I have already come into contact with the Youth Welfare Office, which is not the worst idea for me. I have already successfully completed a process, so I said that they should make this message. But if I had known what was in there and what happens after that, I would definitely have taken the return to the clinic.

So I sat at the youth welfare office for the second time and this time there was another employee. In total there were five people in the room and I was there alone. I knew something was wrong. The employee then read the message. And from then on, the worst nightmare you can imagine really started.

I sat at the youth office and the danger report was read to me. At first I was much more confused because a suspicious diagnosis was written up by the clinic that I have never heard. I mean I don’t know how you would have reacted but when I was 14 years old I was very overwhelmed when I was told that I should apparently have an artificial disorder. For all those who don‘t know it its the munichhausen syndrom which says that i simulate all my symptoms and would be healthy in real life. wft

a case that was told to me by the authorities really made me cry. it was about a young woman who demanded life-threatening operations and drank liters of gasoline to artificially create symptoms. the munichhausen syndrome is one of the most serious mental illnesses there is. and the clinic just threw it into the room without thinking about it. my life destroyed it. this small

But that wasn’t all. I then made my statement and had absolutely no idea what to say. I was treated there like a simulantin. and I’m traumatized by that until today. Furthermore, I was told that I should do ten push ups now because I was healthy. I fell out of there crying. It felt so bad.

It’s January 30, 2023 and today will be the worst day. A week ago I found the decision of the youth office in my mailbox. The decision means that I have to go to a closed psychiatry for up to six months in which you get an opinion on whether I’m lying or really sick. In addition, I get a woman who is the biggest garbage and my parents lost the right to decide where i live and which doctors im allowed to go to. also my mom got told that she is not good for me so they gorbid me to see her. not even chatting or phoning for ltest up to six month. a nightmare. all things that does not bring enough steadfast explanation. I called a child lawyer if you can prevent this somehow. he said that he must be granted to be my lawyer. I submitted the application but who would have thought the application will be denied without justification and I get a second forced admission.

in the clinic i got treate like a nonhuman person. nobody beliebed me and that is what they showed of pretty clear to me.

the man who should make the opinion of my health was not even a docor. he was a student for psychatric. i wösae him twice in two month. and he only asked me things about my mom. from that he should write if i lie. i dont understand our system to be honest.

but for me the worst was the clinic itself. i dont know if you can imagine. but i was twenty four hours togehter with suicidal teenagers. the vibe there was so depressing and it was just horrible. what i mean with that is that the teenagers the hole time just told storys about how they tried to take her life. or what they have planned to do next. they laughed when they did found something sharp to cut themselves. once a week somebody ran away and the police was there every day to fixation a teenager in the isolation room. you heard screams very often and the alarm was took minimum twice a day. they did not got help. because on my station where i was no psychologist therapist was working. only in the opened psychatric next to me

there i got forced to go to school every day for freeking four hours. i was like in a crash after two days. but the only thing they did was forcing me to go to school. otherwise they took away the 15 minutes phonecall from my i were allowed to have with my mom once a week. also they putted me into the choir. even though i have really struggles with music and loud noises. my head was literally feeling like exploding. after four times they allowed me to quit the music.

The worst thing about it was that they had planned 4 hours of sports lessons per week on my schedule. Of course, I was absolutely finished after 2 minutes and fortunately I had a good teacher there. He saw that I wasn’t feeling well at all and then secretly let me take a break. He told the ward that I would have participated to some extent because otherwise a care would have been wrong and would have checked that I do sports until I feel like I die. But actually I was instructed to make an expert opinion there. But the whole thing from a young doctor who had no idea about Long COVID. Let alone the Münchhausen syndrome, which he was supposed to crystallize. He was still fresh in his studies and not qualified for one of the most serious mental illnesses that ever exists.

At some point, a lawyer kicked me out of there. But with the condition that I have to go to a third clinic. Otherwise, the youth protection authority wanted to extend the whole thing. To be precise, from two months to six months. That was the absolute horror. So I agreed to go to a third clinic even though I was already severely traumatized at that time.

Fortunately, the third clinic was somewhat ok. it can also cope a bit with Long COVID. And there I finally got my diagnosis now my treatment is in the stage of ME/CFS.

The worst thing about the whole thing is that it could perhaps have been prevented if the youth welfare office had not been. I am almost convinced that this whole state in which I am currently tormenting myself comes from the hospital stay. Because I was simply ignored and I had been treated wrongly. I think anyone can confirm that.

Maybe still to my condition at the moment. I have been bedridden for 24 hours for almost two months now. I can move in bed, but not much and not for long. Sitting on a chair is impossible, my mom has to carry me to the toilet. And my assistants because I also received assistance from the youth welfare offices who would like me to do 4 hours of therapy per week and be present there. We now also have to go behind it with a lawyer because it is simply impossible.

It’s just very exhausting everything also for the psyche and yes. honestly I didn’t know for a long time that such a bad health system exists in Switzerland. Because this is not a possibility if you are simply ignored and challenged in the wrong way. Get experts who are trained as psychotherapists and then should determine which therapies I do. I mean maybe not everyone understands that now because I haven’t written everything down, but I can’t even decide for myself which medication I take. Even if I hear from someone that you helped him, then I have to go to this woman and she has to approve it all. But she refuses everything and I just wonder at the moment how can I ever get help if not even possibilities are considered except psychotherapy

I’m sorry, that was all very much now and probably not understandable, but yes, I just wanted to share my story that it might be spread a little more than just throughout Switzerland. Because it is simply an absolute tragedy and there should not be a second case that runs like mine. Even if I think that this Munich diagnosis is made much more often than we feel. Because chronically ill people are simply not believed.

I just hope that one day we will be at a point where chronically ill people are no longer only portrayed as depressed. I mean it’s not impossible to be depressed. But you are not only depressed. You have a serious illness and more research should be done because honestly how else should we ever get well again.

I wish all those affected the very best and hope for healing and a lot of strength I send as much energy as possible to you and yes I think it is simply important that we do not fall into oblivion. Because chronic diseases exist, unfortunately no one can say anything else

Despite everything, I still have good news. For me, I found out that I sometimes have the energy to write something on my computer. And during this time I have written a novel that I am currently in the process of publishing or I am trying. I know there are also people who can no longer write something on the laptop and I am also very grateful for it. But yes, that is the only thing that is possible for 5 minutes from time to time

By the way, the Munich syndrome has not been confirmed with me despite the fact that I was treated like an inhuman