Hundreds, perhaps more than a thousand employees and students at the university, are struggling with long covid. What support can UvA employees and students count on? And what have they been missing? “It’s pretty tough to keep working and feeling so crappy afterwards.”
Sometimes Freya Chiappino (art history and philosophy student) tells fellow students that she suffers from long covid and is feeling tired often. Fellow students then shrug and say “’I'm tired too.’ I sometimes wonder if they stop to think about how hard it actually is,” says Chiappino. She had covid for the second time in February and suffered long covid as a result.
In the Netherlands, almost half of all adults have had covid. On average, one in ten people have long-term complications from it. When you apply this quick calculation to the UvA, of the 40,000 students and almost 10,000 staff members at the UvA 2,500 people have long covid. That number will probably be lower, because long covid occurs mainly in women (75 percent) between the ages of forty and sixty (more than half), but still it will probably involve hundreds of people.
Long covid or post-covid syndrome is independent of the severity of the coronavirus infection. The complications begin only when people have recovered from covid. It is now known that the fatigue occurs because the immune system goes wild and attacks all the body’s own cells, similar to an autoimmune disease. More is not known than is known about the condition.
Almost all long covid patients experience extreme fatigue, concentration and memory problems, writes C-support, the organization that supports corona patients with long-term symptoms. Shortness of breath, hypersensitivity to light and sound, headaches and gloom are also common, as are muscle pain, dizziness, palpitations and joint pain.
How does the UvA deal with these students and employees? Folia spoke to three members of the UvA community. One of them is Eric Schliesser, professor of political theory, who received long covid in January 2021. It was a very unfortunate moment: a month before he was to give a lecture to five hundred students. “My colleagues then helped enormously by jumping in as much as possible.”
Five months in bed
For the next five months Schliesser was in bed with enormous headaches, concentration problems, dizziness, and fatigue. Schliesser: “For two months I have an official diagnosis: long covid generated migraine. The positive thing about migraine is that it is partly treatable with medication.”
UvA employees encounter the company doctor when they are ill for an extended period. Schliesser found it very useful. “The company doctor was super sympathetic, compassionate, and thoughtful. Because I don’t belong to the very first generation of long covid, I didn't have to do so much informing, and I could especially count on understanding.”
Nevertheless, Schliesser was still spending a few hours a week answering questions about his work from bedside. “In retrospect, I think that I, and with me either the company doctor or the department, overestimated how much I could handle when I was so ill. For example, during my sick leave and partial disability I still accrued extra overtime, which is a sign that, despite good intentions, it was not handled entirely well. Also, monitoring your own boundaries is quite complicated.”
Guarding your own boundaries
Guarding your own boundaries is an essential part of living with long covid. It took some time for Schliesser to understand what was causing the migraine. “When I started to feel better again, I also tried to pick up my social life again,” Schliesser says. “I never quite understood why I was totally floored afterwards.” It turned out to be the social interaction, along with the sleep deprivation, that caused the migraine.
Now he limits his social interactions to half an hour. He can’t join a Zoom meeting for more than 15 minutes. Even something like cycling is still too complicated cognitively. “I’m completely worn out after ten minutes. In Amsterdam, where I used to cycle everything, I now mainly walk. If I walk somewhere alone, that goes well. But if I walk with someone else and I coordinate walking together or socializing together, it’s energy draining for me.”
It also took a while for Chiappino to figure out how to deal with long covid. “Before, I just did things that were too energy consuming and then I would collapse all over again. My head doesn’t work the way I’m used to. I’m easily distracted and forget a lot, and when I’m very tired I don’t see well. Now I know that I can only work a few hours a day, either for my studies or my job.”
Maddy Vangangelt, a student of interdisciplinary social sciences, also recognizes this: “I don’t really recognize the signals that indicate that you are tired. But if I pass my boundaries, I am constantly sleepy the other day, and I constantly have the feeling that you have when you have just woken up. It’s a fuzzy feeling, a fuzzy head. I then have to deal with it all day.'
Financially, UvA employees can count on collective disability insurance. Schliesser: “That is a welcome windfall. It's not one hundred percent disability insurance, but it’s not shabby either.” As a result, there are few UvA employees for whom the compensation fund for long covid victims in education is very urgent, reports UvA union executive Jan Boersma. That is a fund of 150 million euros that the FNV and the General Education Union (AOb) are demanding from the government.
It’s different for students, they don’t have an employment contract with the university and are more on their own. Vangangelt has had long covid since February this year. “It varies from one lecturer to another whether you can count on understanding and deferment. For the course I’m taking now I got the extra time I needed. But for two exams I had to take when I had covid, I didn’t get any postponement.”
Chiappino spoke to the two student advisors of art history and philosophy. “But you have to arrange everything with the professor yourself, they told me. It would have helped me if there had been more guidance from the university on how to deal with this. I notice that it is difficult to do that myself.”
For example, the general practitioner told her to listen to her body and mind, and to keep trying to do things. “I found that a difficult piece of advice. Because I also hear that you shouldn’t cross your boundaries because then you won’t recover. I also began to doubt myself sometimes, because the symptoms are so vague, and you just want to get on with your life. It really is a mental process to accept that things are not going well for a while.”
For Chiappino, it would have helped if there had been help from the university to focus more on her recovery. Now she feels stress mostly about not being able to take all the courses. She is taking two courses while her body tells her that one is enough. “I am very stressed about whether I will be able to complete my subjects when I feel this weak. But I don’t want any more study delay.”
Vangangelt lives outside of Amsterdam and is able to attend a maximum of two hours of teaching per day. “The UvA is doing everything it can to have the education fully on campus again as soon as possible. I find that difficult, because I belong to a high-risk group, and for those people it is nicer to have the option to participate online.”
More medical research
According to Schliesser, not enough research is being done on long covid. In addition, he got the idea from Dutch government policy that it is mainly pushed into the paramedical circuit. “Too much is kept out of the medical circuit because paramedical help is cheaper. Physiotherapy, occupational therapy, meditation... I find it useful, but it is not the solution to the problem. In the end, the various occupational therapists I've visited have only made the kind of migraines I have worse.”
Eventually, Schliesser was diagnosed with long covid at a long covid clinic in London. “At the moment, long covid is an elusive disease for the specialists and you can’t score very easily with that. It’s the same for other infectious diseases, like Q fever and SARS, they are currently poorly researched and poorly understood.”
Compared to other countries, research in the Netherlands into the causes and treatment of long covid has barely gotten off the ground. This is partly due to a lack of money. Researchers either scrape together the money themselves or do the research in their spare time. Researchers at Amsterdam UMC and UMC Utrecht saw inflammations throughout the brain in two patients with long covid. Last Pentecost weekend they published the results in preprint. Additional research is needed to find a link between the inflammations and long covid.
After five months of sickbed, Schliesser began teaching again. “After every tutorial, I was in bed for a day or sometimes two with a headache. I actually spent the whole week preparing for the tutorial and lying in bed to rest.” The lecture he gave last spring went a little better. Schliesser: “That is also more of a one-way street than a tutorial. But the recovery period was sometimes 12 to 16 hours, often with headaches.”
Still, Schliesser had a good feeling about it. “The students are incredibly encouraging, sweet and compassionate, really very nice. That’s super-nice. But it’s tough to keep working and feel so shitty afterwards. I often tell people I have an invisible handicap. It makes being a father, partner, colleague and teacher complicated, and I have to get used to that.”
For Schliesser, doing research in particular is easier than teaching. “In a quiet room I can still concentrate well.” With the cooperation of the department, and some American grants, he will be going on research leave this fall. He’s doing that mainly to give himself a little more time to recover outside the lecture hall.
For all three, it’s hard to look into the future. Vangangelt: “I want to start a master’s in September but don’t know if I could do that without study delay. Actually, I can’t know that until September either.” Chiappino finds it troublesome that the disease has no end point. “If all goes well, it won’t stay this way all my life because I’m still young. But I also don’t know how long it will last. I just have to take it very easy and just see.”
Chiappino has another tip for other students who are ill: share with fellow students that you are not feeling well. She herself is going on an excursion to London soon. She isn’t looking forward to that and has already agreed with the lecturer that she doesn’t have to do the whole program. “I have also shared with the group of students, whom I don’t know yet, that I am sick. Students came up to me and said, hey, that’s really super annoying and if you want to go to a park with me one day to chill because you don't want to be alone then you should just say so. I found that heartwarming. You feel so alone because you have to watch your limits yourself and say no to fun things. Little things like that really help!”