Felix

Felix has had Long Covid symptoms for seven months. He has bad headaches, chronic pain, and debilitating fatigue. He has seen various health professionals in the UK and in Germany, including the Long Covid clinic, and prescribed various pain medications. Nothing has improved his symptoms. He has to carefully manage his daily activity otherwise he is unable to do anything but rest in bed the following day. It is difficult adjusting to being cared for by his parents when he had been studying abroad and living independently. Uncertainty about the future for himself and for his parents is the “big elephant in the room.” He wants to see more funding put into Long Covid research and recognition by healthcare professionals of Long Covid as a physical condition. Felix was interviewed in June 2022.

On a Monday morning in early December, Felix started feeling unwell with flu-like symptoms. After a text message from one of his University friends who had tested positive for Covid, he booked a PCR test. Felix’s test came back negative which he was surprised by because other University friends he was in close contact with were having the same symptoms and receiving positive PCR test results.

After a week of seeing no improvement in his symptoms, Felix contacted the University medical practice who sent him to hospital for tests which showed nothing wrong. He was advised that it was probably the flu. After feeling more unwell, Felix contacted 111 for advice and then a week later he went to a walk-in clinic. He was prescribed pain medication and advised to go to hospital if his symptoms didn’t improve. At hospital, Felix had further tests including a CT scan which found nothing. A further PCR test was negative. Felix returned home to Germany for Christmas and saw his own GP who did an antibody test which showed high levels of Covid.

After the Christmas break, Felix didn’t return to the UK to start the new University term. Between January and April, Felix saw various health professionals in Germany, including a neurologist, the chronic pain clinic, and the Long Covid clinic, but nothing has helped to reduce his symptoms. At the chronic pain clinic, Felix had some physiotherapy which was helpful to learn techniques to deal with his symptoms. He thinks non-specialist health professionals don’t know what advice to provide. His GP recommended he try some sports but Felix knows that makes his symptoms worse. Felix now sees his GP once a month for a sick note and to check how he is but there is little else he can offer and “it’s depressing.”

Felix’s Long Covid symptoms of bad headaches, body pain, and fatigue have remained “pretty constant” for seven months. With the fatigue he can sleep straight through the night until 10 or 11 in the morning and still “when I wake up I still feel tired…there is no improvement at all after sleep.” On days when he has done too much, the next day he is unable to do anything. He has to lie in bed all day. Felix has to plan his activities carefully for the day and sometimes he has to cancel plans. He knows now he can do two hours of light work but he has to be careful of exertion. He wants to do things, like run for a bus, but he has to force himself not to because he knows he will be worse the next day.

After living independently at University, going back home “sick and need [ing] care” was “shocking” for Felix and his parents. When he can, Felix tries to help out in the house, do his own shopping, and cook for his parents which he says, “gives me a better feeling to not be like just sitting here doing nothing.” But some days he can’t.

Felix feels his self-identity has changed since having Long Covid. He had been looking forward to studying a Masters in geography; a subject he enjoyed and “made up a huge part of myself.” He says when he caught Covid, “my whole previous life ended at that moment.”

Uncertainty about what the future with Long Covid might look like impacts Felix and his parents. Felix is hoping to complete his studies but it is difficult to get an extension as the University doesn’t currently recognise Long Covid as a medical condition. His parents had planned to retire soon but now there is uncertainty around whether Felix can work in the future and they may need to care for him. Felix is trying to organise disability benefits, but a doctor sees his age and physical appearance and not the post-exertion fatigue.

Felix would like to see recognition of Long Covid as a physical condition and much more funding put into Long Covid research for the large number of people who have the condition.

Felix’s “whole world view broke” when he got Long Covid. He had to return to live with his parents and doesn’t know whether they will need to postpone their retirement to look after him.

Age at interview 22

And how are you feeling about the future?

Yes, pretty terrible you know like to be honest my whole world view like just broke after I got Long Covid. You know, you get an illness and like the health system, most of the doctors don't take it seriously, most of the researchers don't take it seriously and yes, that's really bad you know. I have no idea how my future will be. Maybe it will go away eventually, I don't know. Would be great, maybe there will be innovative treatment, but I don't see how because with no money or basically low resources, you know. Because of course in 2020 we managed to develop a vaccine in one year but it is also only possible because of the massive support for the research. So, I think it would be obviously possible to treat probably the Long Covid which is a probably a similar condition, I don't know, but yes that’s also shocking thing for me to learn why I got Long Covid.

Yes, like the insecurity. My parents don't know if they have to care for me like my other life, they don't know. My parents are actually going to retire in I think like three or four years, and they have saved enough money for both of them and yes, it's also pretty hard you know. They don't know if I'm able to work or do anything in the future.

That’s very interesting.

They may need to care for me so at the moment it's actually not that bad, in the current moment because I'm here, I'm helping a bit in the house, they're working so it's pretty much not that – like there isn't that big of an impact, but the long-term issue it’s like the big elephant in the room I would say.

That's very interesting. So, it kind of ripples out to the impact on the family that you're uncertain about your future, but that makes they're also uncertain about their futures with you?

Because yes, you know they might need to care for me, they might need to set money back for me to care for me, or they have to consider now I might save them for the long term. And yes, of course like I told you before, I'm actually trying to get some disability benefits, but I know it's pretty hard, especially in my age and my physical appearance you know because if you talk to me, you don't find anything like, unusual because when I get my post-exertion, there's no doctor near me, you know. That's the issue. Like I think that's also another big issue. Like those doctors get the impression that the people are healthy because they are healthy at the moment, but they will get a really bad relapse maybe on the next day when they're not in the doctors’.

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Felix found it difficult returning home because he was no longer able to study his passion.

Age at interview 22

Yes. Like I moved back in – like before coming to the UK, I did a five-month internship in a town close to [place], which is like new… and there I lived on my own, then I moved back into my parents because there was no point in searching for accommodation for like two months until I go to the…until I start my studies in the UK. But, yes, it wasn't planned that I’d probably move back in, of course, yes. Of course my parents and myself was, I think, pretty shocking at first. Like, I come back sick and need care and yes, like before I lived basically on my own. I got a scholarship and I worked to finance my studies so they like – like I basically contacted my parents here and then but I was basically living my own life before, like Long Covid happened to me.

So, you were very independent then. How has it impacted your relationship with your parents?

Yes, I don't know. I think it's stressful for both of us because for them, emotionally, they don't know. You know they want to see me succeed and now I'm here, can't finish my studies, no idea what the future is going to look like. And for me personally myself, like myself suffered heavily. In the past I was – like I really enjoyed my studies and I like geography and was looking forward to do my thesis and then go on to do a Master's degree. And I was already searching for universities to do my Masters when I got sick so yes. Like basically my whole image of myself basically destroyed because like normally or basically, I was never good at doing like sports or doing like manual labour or things like that. It was always really not skilled in any kind of those fields or arts or anything like. I always liked geography in school. I wanted to study it, I studied and enjoyed it and yes like it made up a huge part of myself. Like I was into it and enjoyed it and basically my whole previous life ended at the moment. Like I would say 70%. Yes, in past I enjoyed cooking for myself and that's one thing I still got ‘cause I can now cook for myself and my parents to help them out which also gives me a better feeling to not be like just sitting here doing nothing. That's terrible.

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Felix said his university didn’t recognise Long Covid as a condition which requires extra time or other allowances. He was “fighting” for extra time to write his thesis.

Age at interview 22

Yes. I can leave or like put it on hold for one year and I put it on hold for one semester when I went to the UK. Like before coming to the UK, I finished my degree. I only was missing the thesis so I had everything else completed and the plan was that I would go to the UK, do one semester, one term of normal studying and do my thesis there and then I’m going back to Germany, will go on to study my masters. That was the plan and yes, it failed. I had to like quit my studies at [university] in I think in January or February I quit there because I said I can't go back and yes, now I'm on leave but in the next term, like in the next winter term beginning of October I will have to do my thesis and I'm currently fighting to get like more time or any other kind of compensation for my health situation. The issue is my university doesn't recognise Long Covid as a condition where you get more time for example so that's an issue and yes.

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