Anne Vroegindeweij (40) got corona. It will go away, she thought, but she started getting more and more strange complaints. It turned out to be long covid, and two years later she is still in the middle of it. To draw attention and understanding to the disease, she wrote a book about it.
Fit, all crown
Anne: “I spend most of my days in a dark room. I wear special glasses for the light on a screen. I don’t go outside much, only to let the cat out and sometimes a few hundred meters nearby, or for doctor’s appointments. It feels hopeless, but this is what my life looks like right now. I have long covid. I found the pandemic to be a difficult time, with working from home, the tension in society and the minimal social life we had left. But I was healthy and had a nice job as an editor and campaign manager at a women’s rights NGO. I wasn’t scared, but I was aware of the seriousness of the situation and knew it wasn’t the flu. Because I didn’t want my parents to get the virus, I did everything I could not to spread it. I got vaccinated twice and wore masks, but I wasn’t too worried about myself. After all, I was fit and healthy and felt relatively safe. Until I contracted corona in November 2021. The pandemic is over for most people, but not for me.
A bit too optimistic
I wasn’t even very sick from it. Yes, I had a headache and a little fever. When I got tested, it turned out to be corona and I had to be quarantined for seven days. That was what I found most annoying. So when I was allowed to go outside again, I was literally eager to get to the front door. I was there again! Unfortunately, that was a bit too optimistic. I was able to do a lot of things again after corona, but certainly not everything. During that period I trained for a half marathon three times a week and that went well. I felt like the pandemic was almost over, I had confidence in the period that was coming. I was in a good flow and felt like just going back to work. Yet I noticed that something had changed. When I went to friends’ houses for dinner and had a glass of wine, I noticed that I could no longer tolerate alcohol at all.
I suddenly got a severe headache and became so tired that I wanted to lie straight down with my head on the table. Not for me, I didn’t know myself that way. Several times I had to ask friends for a cup of coffee and paracetamol and then go home. I went to bed and sometimes didn’t wake up until thirteen hours later. I worked hard during that period. We were wrapping up the year and I was busy, I thought that was why. When I sat behind a screen, I suffered from a kind of ‘cramp’ in my brain. Then I started to feel dizzy and nauseous. As if I was carsick or had glasses that were too strong. I couldn’t bear the screen anymore. I also suffered from palpitations. Strangely enough, not even when I was making an effort, but when I was lying on the couch with my ex-girlfriend (we had broken up during the pandemic but were still good friends) watching a detective. I couldn’t follow the plot anymore and it felt like my heart wanted to jump out of my body.
Stop working
I thought it was all so strange that I decided to go to the doctor. Fortunately she was very alert. She listened to my lungs, heard nothing abnormal and then said quite quickly: ‘I think you have long Covid.’ Not much later I was at a physio for another check. I had to run on a treadmill and the oxygen level in my blood was monitored. The physiotherapist could confirm what the GP had already said: it was probably long Covid. I was no longer allowed to run, I was no longer allowed to climb stairs and I actually had to stop working. I was caught off guard and tried to ‘negotiate’. Couldn’t I work a little less? Or run a little less? I couldn’t paralyze my entire life, could I? She replied: ‘It’s up to you, but it won’t help your recovery.’ She also said that most patients recovered within about three months. About three months? I could not believe my ears! Did this take that long?
Although I thought for a while that things wouldn’t go so well for me and that I would be up and running again within a few weeks, nothing could be further from the truth. From that moment on I completely collapsed. Afterwards it turned out that I managed to keep myself going on adrenaline, but that actually only made me more exhausted. My energy is completely gone. Due to the virus, I am dealing with PEM (post-exertional malaise), which means exercise intolerance, in which rest does not help and which sometimes lasts for days or weeks. Only minor physical or mental exertion can make the complaints worse again. So basically there’s nothing I can do to relieve myself or make me feel better. These symptoms are the same as in the disease ME/CFS.
Fighting for understanding
The difficult thing with long covid is that little is known about it. Not much research has been done on it and few people know exactly what it is. I feel like I had to struggle a lot to explain that I was in really bad shape. People often dismiss my complaints with ‘it must be all in her head’ or they try to give good advice such as ‘maybe the Wim Hof method will help against fatigue?’ Or: ‘a Buddhist camp might be something for you, where you will learn to ground yourself better.’ In the beginning I thought it was nice that people tried to think along with me, but now it mainly gives me the feeling that I am not being taken seriously. I don’t think my family and most friends realize how seriously ill I am. Apparently it is difficult to imagine that. They have now reached the point where they regularly visit me and try to help me. The only person who has really made me feel good this whole time is my ex-girlfriend. So we broke up during the pandemic, but she saw firsthand how I was doing. She still comes to my house at least once a week and does things around the house for me. She is my mental support and my social oxygen, because I hardly see anyone else. It takes too much energy for me to talk and be with someone. I can do that with her. I wouldn’t know what I would do without her. In any case, there are moments when I think: if this doesn’t improve quickly, there’s no need for anything anymore for me. It all feels so hopeless sometimes.
An eye for those left behind
I have now reached the point where I see myself as ‘disabled’. I have applied for a health insurance card that allows me to travel by taxi to my medical appointments. I have also applied for home care and I now dare to accept help from neighbors to sometimes bring me a message. It took me a long time to give in to this. This is what it is and I have to learn to cope with what I have. Because I would like to share my personal story and show how much impact long covid has, I have written a book. For me, my life right now feels like my worst nightmare. I know that there are at least 90,000 people in the Netherlands alone for whom it is just as serious and for whom long covid is chronic or even progressive. There is no treatment or appropriate care. I want there to be more understanding of our situation and for the government to also get to work. Research must be done and it must be examined what treatment options are available to improve. Care must be taken for those left behind by this pandemic. We deserve recognition. The corona pandemic is over, but we still struggle with the consequences every day
About her experiences with long covid, Anne Vroegindeweij wrote the book De Achterblijvers, € 17.50 (Uitgeverij de Geus).
This article is from Marie Claire January/February 2024.
Text: Merel Brons | Image: Adobe Stock
2023-12-17 15:30:16
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