Michael

Michael began to have Long Covid symptoms after May 2020. He has since had to return home from university and suspend his studies. It was not until he saw a cardiologist that specialised in PoTS did Michael get medication that helped him to “stabilise a little and regain some quality of life.” Michael was interviewed in May 2022.

Michael realised he might be unwell when he began to struggle to exercise like he usually would. He would go on cycle rides and return in a cold sweat and had the feeling of having overexerted himself. Michael recalls that he has ‘never been the same since’ after the last cycle ride he took on the 25th of May 2020.

Michael developed Post Tachycardia Syndrome (PoTS – an abnormal increase in heart rate that occurs after sitting up or standing) and described a ‘horrible sickly feeling’ in his legs whenever he exerted himself and post exertional malaise. His symptoms mean he is unable to sit or stand up too long otherwise it will cause his symptoms to worsen for the rest of the day, causing tachycardia, difficulty sleeping, and palpitations. Due to these symptoms, he has been unable to continue his degree and has had to return home. Michael will have to suspend his studies for a 3rd year. Michael’s symptoms have meant he has had to remain at home which he finds boring as he isn’t used to doing nothing and would prefer to be at university progressing in his degree.

Michael’s mum also has Long Covid and he feels his dad is under more pressure with both of them being unwell, which has meant he has had to pick up the slack. Michael is no longer able to help as much with normal everyday things.

Michael sought medical attention for his symptoms and spoke to a Long Covid specialist who agreed he most likely has Long Covid. He also received referrals for neurology and rheumatology but he found his neurology appointment unhelpful since he was told the source of his headaches was stress, despite informing the doctor he did not feel stressed.

Michael also saw a cardiologist for his PoTS but was once again told his symptoms were stress related. It was not until he saw a cardiologist who specialised in PoTS that he was able to get medication that helped with his symptoms. He said that this allowed him to “stabilise a little and regain some quality of life.” He recalled that it was nice to be believed and speak to someone who did not pretend to know all the answers to his condition. Michael also took part in research for Long Covid in Germany and felt it was nice to meet other people with Long Covid as they believed him automatically.

Michael feels fortunate that he got Long Covid at this stage in his life instead of when he was doing his GCSEs or A levels and feels sorry for children with Long Covid. He hopes to be able to return to university and complete his degree and wants young people with Long Covid to not worry about their education because “education doesn’t expire at sixteen. So… focus on your health” and return to your education later.

Michael doesn’t look as far into the future anymore but hopes to be able to complete his medical training.

Yeah. Well, I think what I try and do is I try and plan for the best and kind of, but I stay kind of in reality. So, with the university, every year I plan to do an intercalated degree, maybe part time and then I make the decision last minute because the university have been good to me. So, far, they’ve let me choose what, what I do, which I’m very grateful for. So, I had a plan for the best, I hope that I try things out constantly. So, I’m constantly trying out kind of you know, safe kind of therapeutic options that hopefully would improve me. To varying degrees of success. So, yeah, I think I don’t really look too far in the future anymore. I think as I would’ve done. I would’ve been like what specialty am I going to go into. Where am I going to live? I can go to Australia, you know, all these kind of things like that. And then it’s like once, once Long Covid hits, it’s like, oh, nothing is certain. I wasn’t expecting this to happen to me. Imagine what could happen next. You know, it’s not like in a catastrophising way, but in a philosophical way.

I just hope that I can be well enough one day to complete my medical degree and become a doctor and help and believe people, basically. I think I’ve learned an awful lot from this experience about how I would treat patients if I could become a doctor. And it’s basically just the foundation of kind of believing people and doing everything that you can to help them, even if you don’t have all the answers, all the guidelines in place.

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Michael said, ‘education doesn’t expire’ and that it is important to focus on your health.

I think that in terms of like education, there’s no rush. You can always be educated later. You know, education doesn't expire at sixteen. So, I’d say like, focus on your health, you know, try and stay as happy as you possibly can despite the adverse circumstance because all of that, you know, that can be really challenging.

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Michael had to suspend his studies at medical school and moved back in with his parents. He felt like his life was “static” while others were progressing.

Can you talk about the sort of impact that this has had on your life more generally?

Yeah well, I love my course. I really, really did. All I want to do is to go back to it. The university has been very good to me, so far. They’ve allowed just to suspend my studies. They’ve also looked into doing kind of intercalated degrees part time and trying to accommodate me as best they can, which I’m very grateful for. I feel like the best way I can be supported by just being given more time, quite frankly. Yeah, because I can’t rush this. I’m doing everything I can, trying everything.

Yeah, so the impact it’s had on me is, it’s really extreme. I used to do a lot of exercise and really enjoyed it. I obviously can’t do that. I haven't been for a walk for a year. Yeah, so, it’s pretty extreme impact and the POTS is a big impact as even sitting up for too long can really cause exacerbation and symptoms and tachycardia for the rest of the day and difficulty sleeping and palpitations and boredom, frankly because you know, sitting at home, I’m not used to being at home. I don’t want to be at home. I want to be at university and progressing. I suppose it’s also difficult to, to see those around you progress and you’re kind of static, almost kind of living like you did when you didn't, like secondary school you know, at home with your parents. So, that’s annoying. Yeah.

So, they’ve been my studies have been officially suspended since September 2020. I was, all summer I was thinking, I’ll be well by then and everything, but then I wasn’t so I had to suspend. And I thought I’ll be well by next year and I wasn’t. I was suspended again in September 2021. And it was looking like I’m gonna have to suspend again for the third year. In terms of contact from the university, I have a meeting with kind of my tutor every probably five or six months just to kind of just like ask them kind of what’s possible and, and talk to some other people at the uni, other staff members. In terms of contact from kind of friends at uni things that really just is when, when I felt like when I wasn’t there then you’re done, you know what I mean? When you’re not there. A couple of messages from a couple of people so it felt very much like being kind of cut loose.

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Michael, a former medical student, had benefitted from meeting other people with Long Covid when he took part in a research study and thinks social media groups can be helpful.

Yeah. So, I’ve kept an ear to the ground and done a bit of research on things that, ideas that are coming up. I’ve been to Germany. I was part of a study there looking into kind of micro clots, diagnostic, hyperactivated platelets as well and possible treatments. And that was, you know, that was interesting because it was kind of meeting other people with Long Covid for the first time. And that, that was really kind of nice in a way. You know, it’s kind of like…and I think everyone had this almost disbelief they were speaking to somebody who, who understands what it’s like to not be able to sit in a chair for too long and all the things, all the awful stuff that comes with Long Covid. And they kind of believe you automatically. And I think that’s, that was really nice. It was also really interesting to learn about that.

Online, obviously, was really helpful. So, if things like PoTS UK website, that was, you know, that was useful before I’d spoken to anyone about PoTS. And I think social media. I don’t really do much social media, generally. But I think that a lot of people have found things like Facebook groups were really helpful. Because other people kind of sharing ideas about what’s helped them. I’m kind of been trying things and keeping people feeling like they’re not alone. I think that that’s probably supported people, and Twitter and all these things. I think that’s supported people an awful lot, yeah.

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Michael thinks he has been lucky that he can financially rely on his parents and move back home.

Well, life now is very I wasn’t stressed before, but it’s very low stress now. I’m lucky enough that I’m, I can financially depend upon my parents. And I haven't been under financial pressures. I know a lot of people with Long Covid have. I’m really grateful and lucky for that. I don’t really have stress in terms of I don’t have any responsibility really. My only responsibility is to myself. So, I recognise the privilege of that. I know a lot of people who have children to look after and kind of marriages that are falling apart as a result of Long Covid. So, in some ways, the fact that it’s happened at this stage of life could be, you know, could be considered a bit lucky. Because I’m not tied down to anything. But the loss of my course and the vision of what life kind of should be like for me; that, that’s the most difficult thing.

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