'I Started Hallucinating' – Young People on Living With Long COVID

When the pandemic first began in 2020, reports warned that coronavirus was especially dangerous for the elderly and those with preexisting health conditions. When young people were mentioned, it was in the context of irresponsible behaviour (see: then-Health Secretary Matt Hancock blaming twenty-somethings for refusing to follow lockdown rules and putting their nans at risk).

Age is still the most important single factor in determining the severity of a COVID infection and is also thought to increase the risk of long COVID, a broad term that describes symptoms that last longer than four weeks. But that doesn’t mean that young people are exempt.

New research suggests that younger adults hospitalised for the virus are just as likely to suffer from complications as those over 50, including kidney, heart and lung problems. According to preliminary findings from an ongoing UCL study, one in 13 younger coronavirus patients also report symptoms of long COVID, which can range from everything from debilitating fatigue, heart palpitations, dizziness, depression and tinnitus. 

VICE spoke to five young people in their 20s and 30s with long COVID to find out more about the little-understood condition, and what they’re doing to cope with its debilitating symptoms.

VICE: When did you first get COVID?
Monique Jackson: About mid March 2020 is when I started feeling low in energy, shivery and sweaty. I didn't have a cough but took 111’s advice and self-isolated anyway. Later I would continually wake up and clutch my chest, feeling tightness around my ribs, neck and shoulder. In the first few months, some symptoms included insomnia, muscle and gastro issues, nerve sensations, rash, tinnitus, numbness and heaviness on the right side of my face, excessive thirst and a feeling of internal tremors…

Did you go to the hospital?
I tried to manage my symptoms at home, but in the second week was struggling with shortness of breath, which led me to seek help from medical professionals. At hospital I had basic tests done, although [there was] no access to PCR or lateral flow tests. My results were normal and I was told that it was likely I was having a panic attack and advised to return home. 

How did that affect your mental health, when they were telling you were fine...?
Initially, I was just grateful to be seen by medics so quickly and relieved my tests were OK. I hoped I would get better after two to three weeks, considering how physically fit I had been. It was after a month or two in, when I kept getting new symptoms weekly and was unsuccessful in my attempts to work from home or exercise, that my mental health got worse. Different clinicians would give conflicting feedback, suggesting that I may not even be suffering from COVID -19 as I didn't have a positive test and/or a continuous cough.

Surely that only made your anxiety worse when practitioners weren't believing you?
Fortunately, I was lucky to find supportive practitioners who prescribed medications to treat my symptoms and shared with me that there were other patients who were presenting with similar problems after a COVID-19 infection. The whole situation was confusing and scary as I didn't understand why my body was not recovering when other older people that I knew seemed to bounce back.

When did you start to learn about long COVID?
I think it was only until this year that I heard a doctor formally tell me he thought I had long COVID. I first came across the phrase through online patient support groups [like] Body Politic, Long COVID Support and Long COVID SOS. In my opinion, online support groups can be helpful at raising the visibility of the illness, offering insight into different patient experiences, signpost resources and provide emotional comfort for people as a space for sharing their stories. The best sites have moderators or have guidelines to address any misinformation concerns. Some of these groups have connected patients like myself to take part in scientific surveys and participate in research which helped get long COVID recognised as a medical condition. [But] I think it is still important to state that anyone with concerns that they have an illness such as long COVID should speak directly to trained medical professionals for a diagnosis.

Can you tell me about your advocacy?
I created the @_coronadiary on Instagram to draw my experiences of illness since March 2020. When I started I hadn't heard of the term long COVID and didn't know many people who were in a similar situation. In July, I had relapsed and was spending a lot of time in bed and was trying to make light of my situation. I hoped that by sharing my story online more people who may be like me would come forward and talk about it. 

Definitely. Can I ask what you’re doing to treat it?
I have had some prescribed medications which have helped alleviate some symptoms, but resting lots has been the biggest way of dealing with it until I got the Pfizer vaccine. Although I had an unpleasant reaction to the vaccine at first, in the last few months my condition has improved and strength return quite dramatically. I know this is sadly not the case for everyone with long COVID. I have a few unpleasant symptoms remaining but I feel super lucky to have more energy and be in less pain. 

VICE: When did you first get COVID?
Nia Wyn: I first got it in February 2020. Me and my partner were really ill, but we thought it was just a horrendous flu. I was bed-bound for a week and a half – I had fever, a cough, all that kind of stuff. I went back to work once I felt okay, but I just felt exhausted all the time. After February, I started to get a lot of pain in my hands, particularly in my thumbs. I’m a gamer and I wasn’t sure what it was – I thought it was RSI. I had a lot of chest pains, still. For months, I had headaches, coughs, I kept thinking I had COVID again. Then the pain was kind of at the forefront; I was worried I had inflamed joints; I didn’t feel like I could play guitar as much. I went to physio and I had my hands in braces for ages, looking like a Pokémon trainer.

I then had a referral to a COVID clinic; I’ve only just been seen two weeks ago. I’ve had a shitty flare-up over the last month or so, symptoms like fatigue and stuff. The Long COVID clinic said that I need to work on my individual capacity for fatigue and tolerance for fatigue. Me coming here today, that’s all I’m going to do today. I’m operating with less gas in the tank, in that kind of sense. They said if I push through the symptoms then I’ll have an even bigger relapse.  

Can you tell me how it’s affected your work and career?
The hands are the biggest thing. Because we’ve been in lockdown, there hasn’t been any gigs – it’s only been live streams, which has been good in a way. If I was doing gigs, my energy would’ve been shot. When I was doing live streams, it was really hurting my wrists and hands. I was having to ice them in between songs. I am particularly worried about how things will be in the next few months, when things start ramping-up with gigs – even in rehearsals, when we’re doing three or four hour rehearsals.

Can you tell me how you’re going to medicate yourself and plan everything when you go on tour?
I’m working that out. I’m hoping to discuss it with the fatigue clinic that I’ve been referred to locally. I think there are days in between when I’ll be heading home. I’m trying to get into meditating, but I find it really hard because I have OCD – just sitting down, not looking at a screen. I’m going to try and do five or ten minutes in hotel rooms. 

How are you feeling about the future? How do you feel about getting properly treated and recovering?
I don’t know. I have some moments of hope, especially after having that appointment. I’m glad I pushed to get it, even though I waited a long time. The physiotherapist who saw me said she had Guillain-Barré syndrome, which is a post-viral thing – she recovered after two to three years through working really hard at rehab. I’m hoping that I’m really lucky and that I can recover, however long it takes me. But to be honest, over the last few days I’ve really struggled mentally. But there is a lot of research going into it, which will hopefully help people that have ME too. I think they are putting their money into [it] and they’re going to have to because it’ll be a public health crisis.

Do you think people are starting to take it more seriously?
Yeah, because people didn’t get it in the first wave. But it’s been 17 months now and because so many people got it in the second and third wave, and it’s past the 12 weeks now, people are starting to realise that, “actually, I haven’t got my sense of taste back”. Even if they’ve got the milder symptoms of long COVID, they are understanding that it can be a big scale thing.

VICE: Can you tell me about when you first got coronavirus?
Charlie Forbes: It was November 2020. We were just going back into another lockdown, but we had foolishly booked a writing week in Norway at a friend’s studio. When we arrived, another member of my band started feeling really ill, but was convinced it wasn't COVID. None of the rest of us felt bad, but I was suddenly insanely thirsty. I remember downing pints of water and thinking, ‘This is kind of weird.’ 

When we got back to London I thought I should probably get tested and it came back positive. It was honestly pretty mild – no worse than a four out of ten on the illness scale. When it cleared up, I was still really thirsty. For the next three months I would drink pint after pint of water and wake up six, seven or eight times a night to pee. It was the weirdest sensation ever – I couldn't quench the thirst.

I lost a lot of weight in the first lockdown, [but] it was my main lockdown goal to diet and do some exercise. Then in November I lost another stone without really doing anything. At the time I just thought, ‘Cool, that was easy.’ But it turned out it was actually a symptom of diabetes. It was eating into my ketones; reserve fats that aren’t really meant to be fucked with. If that’s left untreated for a long time, it can cause something called ketoacidosis, which can be really dangerous. 

I saw a study about COVID triggering diabetes in young people who have no predisposition to it. I told my mum about it – she’s a nurse – and she recommended I try some urine analysis sticks to see if there was any glucose in my pee. My pee was full of sugar, which is a surefire way of saying I have diabetes. But I still couldn’t quite believe it. I went to the GP and he said, “Yeah you have diabetes.” I had to go to A&E.

That’s rough.
It’s just fucking random. I have type one diabetes, so my body doesn’t produce any insulin anymore. I have to do between five and seven injections a day, morning and night; then with every meal. Special thanks to the NHS, the greatest thing this country has ever produced, and all its incredible doctors, nurses and staff for diagnosing me, teaching me how to administer insulin and explaining how to live with this condition all in the space of about six hours.

What do you do for a living?
I’m a drummer, I play in a band called Shame. Pre-pandemic we toured the world pretty aggressively. I was probably gone from about 200 to 250 days a year.

How does this affect your work with the band?
Within the first week I had my first hypo, which is where you get really low blood sugar. It basically feels like a panic attack – you go really shaky and your heart starts beating really hard and you feel like you might wither away and die. I started worrying, ‘How easy would it be to do what I do with this condition?’ We had a socially distanced tour at the end of May and June and it’s manageable. I think it’s pretty easy to not have [a hypo] as long as I’ve got a can of Coke with me on stage.

How has that changed your attitude to COVID?
One thing that I get really annoyed about is back when the Euros were on and there was that massive spike predominantly fuelled by 18 to 35, 40-year-old men. They don’t fall into the category of people you’d get super worried about if they get COVID because they’re young. But I’m living testament to that being absolute bollocks.

VICE: Can you tell me about what it was like when you first got COVID?
Connor Batty: I tested positive at the end of June 2021. I was about a week away from getting my first dose, which was frustrating. On day three my condition went from tired to extreme fatigue, excruciating joint pain, a high fever, a cough that hurt, a constant need to use the bathroom, sweats, and some mental anguish as well. It was the worst I'd ever felt. This continued onto roughly day eight or nine, by which point I felt less like death. For about a month afterwards I was just happy to be able to go out for a walk. 

At what point did you realise that it was long COVID? 
I've always had very high energy levels and have been exceptionally athletic, but I found I was living in a perpetual state of fatigue. Where I could do everything before, I was now having to select certain key actions in my life. Usually I could easily do two forms of exercise a day, do chores, work, etc but at this point I could only just do my work. My self-care fell by the wayside. It's taken three months to get to a point where I can ride my bike for two hours. Pre-COVID, I could do 12 hours. I'm at the point now where I'm happy if I can do ten hours a week.

How has this affected your mental health?
It's been tough in that it's been a really humbling experience. I count myself incredibly lucky that I've always been in great health and able to do whatever I want, but to be weakened and have that taken away from me – it's really made me think about who I am and what I do. It's definitely changed how I interact with the world. It's made me a lot more grateful. 

Have you been to the GP about it?
No, because I feel like I'd be wasting their time because I don't really know what's wrong with me. I think I could be taking up space that someone with a critical or urgent case would need. What would I say to the doctor – I am exhausted, I have painful headaches everyday, I go to the bathroom more often, I'm always dehydrated? I don't know what they can say to me that's not just going to put a burden on the health service. I don't want to be a burden while I can mitigate things myself and learn what's wrong with me myself.

How have you been managing it?
Some days are easy days, others are training days. That's how I view things now. I have a big bike thing tomorrow so I've been banking credits in order to be fresh for it. That means riding less, making sure I get my sleep and taking it easy in the lead up to it. Then I can expend energy tomorrow knowing I'll be pretty run down for the rest of the week. My calendar has never been so regimented. If I'm going to a gig in the week, I know to make sure that I don't overload the next morning – or that I should bank some sleep credits in the lead up to it. I'm teetotal, don't smoke, sort-of straight edge, so this has made it easier as I haven't had to cut stuff out. 

VICE: What was it like when you got coronavirus?
Tolga: I actually got COVID twice, but it was only a confirmed infection for the time I got it last December. I recovered really well from my first COVID infection but I was having slight concentration issues for a while afterwards. I was climbing in Switzerland the summer after that, so physically I was feeling much better. 

During the confirmed infection,  it was worrying at times but I felt mostly fine. I had a horrible sore throat, I lost my sense of smell – which hadn’t happened before – and I was just exhausted. I was also very merry and positive, thinking to myself like, ‘Two weeks, whatever, it happens to everybody, I’ll be fine’. That was where I was wrong, really. 

After the second time, how did that turn into long COVID? Did you feel like you just didn’t get better?
I actually got much better. Two weeks of being ill and I felt normal. I rested for another week; I wanted to give my body the rest that I thought it needed. I was very active before COVID and very Type A, in that I would exercise every day, do HIIT workouts, go climbing all the time and I’d travel for work quite often. I also had a very demanding job, so I was constantly at 200 percent. After the first two weeks and the week I rested, I really wanted to exercise, so I said, “OK, cool, I’m going to do a 20-minute HIIT workout.” Halfway through I started getting super dizzy, so I barely finished the workout. Even after a couple of hours I was still getting this weird sense of dizziness where you feel like you’ve been knocked in the head.

In the following weeks I had constant boom and bust situations after I did exercise or small amounts of movement. It was a harrowing experience, with an onslaught of additional symptoms creeping up. One night I started hallucinating: I remember this Amazon delivery box next to my bed that turned into a cat and jumped next to the mezzanine I was living in, turned into a deer and hopped out of the window. I have barely ever done anything psychedelic; I haven’t properly drunk alcohol in five years. I have never hallucinated in my life before but I was like, ‘Okay, I’m pretty sure that’s not real!’

I would start feeling good after resting for a couple of days and then, thinking I had recovered, I would try to push myself again, only to be knocked back another to absolute exhaustion. This boom and bust cycle continued until I was too afraid to leave the house thinking I wouldn’t have the energy to be able to make it back.  

What was the next stage? Did you contact GPs?
The symptoms started getting worse and more varied. The thing that happened next was palpitations and absolute mental lethargy. I was trying to watch Netflix and I literally couldn’t focus on anything. My brain didn’t have the capacity to understand what was happening on the screen. 

I had never felt more anxious in my life. It felt like my bodily exhaustion was also extremely linked with my mental mood and energy. As soon as I had a relapse and pushed it too hard, it also felt like the happiness was sucked out of my entire body. I was just there thinking of nightmare scenarios about how I was going to die; how everything was terrible. I look back at it now and understand that what I went through must have had a neurological aspect to it. 

When I went to the NHS, I was told to get therapy and they explained that some of the symptoms could happen to people after viral diseases. It wasn’t really reassuring, and no one really could give me a way out. I was also put on the long COVID clinic waitlist. I contacted my work health insurance and I said, “This is how I’m feeling, what are we going to do?” They did a lot of tests on my lungs and my heart which all came out clear, apart from the fact that I had low gas transfer in my lungs and I had developed an irregular breathing pattern. They prescribed me exercise that would slowly increase in intensity and to work with a breathing specialist to rework my breath. 

I also started tracking all of my symptoms day-in day-out. So every day I’d record how my brain fog, palpitations, exhaustion, blurry vision, tinnitus, insomnia, and headaches were doing. I ended up also buying an Apple Watch to find out what my heart rate was since I could feel my palpitations. At times, it would be in the 140-150s when I got up to go to the bathroom. 

Should be 70 to 80, right?
Yeah. Anything above 100 when you’re resting it is considered your heart is beating too fast. 

Can you tell me about where you are now and how you’re feeling now?
My biggest turning point was when I got the vaccine. There was an informal study done in one of the Facebook groups about the effects of it on people with long COVID – some people got much better, some people got worse. Somehow I got lucky enough to be given Moderna which came out as the most helpful one in the study. The day after while on a walk, my peripheral vision and brain fog just cleared. It was honestly a true hallelujah moment! I thought, this is what I’ve been missing for the last eight months. I’d forgotten what it was like to look at the world in a clear way.

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