Callum
Callum previously lived alone but has moved back to his parent’s home since developing Long Covid. He used to work as a mechanical engineer but has changed careers since his illness. Callum describes his ethnicity as white.
Callum caught Covid at the start of the pandemic in March 2020 and has moved back to his family home. Although he is still very much affected more than two years on, he has gradually found ways to deal with his condition and find meaning in his life as it is now. Callum was interviewed in May 2022.
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Before catching Covid, Callum worked full time as a mechanical engineer. He was busy and liked to ‘pack a lot’ into life. He was a keen runner and had other hobbies and a full social life. Callum caught Covid in March 2020. The first week of his illness was ‘pretty grim’; he felt exhausted, with nausea, a fever and severe breathlessness symptoms. He spent the week in bed on his own at home, resting as much as he could, and felt very concerned. He started to feel better and go out again after about 10 days. However, after a very short walk, he started to have severe muscle aches, weakness, headache, and brain fog. He just felt terrible. He stayed on his own ‘in survival mode’ for about 5 weeks. Even a shower or sitting up for 20 minutes would leave him feeling unwell. He developed tachycardia, palpitations, gastrointestinal issues (like stabbing pain, diarrhoea and constipation), and a disrupted attention span. The investigations that he has had have all failed to find ‘anything wrong’ which has been difficult.
After the ‘huge shift’ in his life caused by Covid, Callum felt so unwell he started to withdraw from his relationships and felt depressed and desperate. He decided with his parents that it would be best to move back home with them until he felt better. He is still living with them over two years later. He felt some grief at about losing his independence and had a sense that he was just surviving. At that time there was no wider understanding that Long Covid existed. Writing a blog about his experience quite early on, helped to raise awareness of the condition. Since then he has done over a hundred media appearances on Long Covid. Although tiring, raising awareness through this media work has made his experiences more meaningful and has given him a sense that his life has value and purpose.
After a few months off work, Callum tried a gradual return to work and did his very best to increase the hours he could do. After a relapse of his Long Covid symptoms in December, his company indicated that they couldn’t do any more to keep him in work and he was made redundant. It was a shock to be made unemployed and very upsetting, as work was a big part of his identity. The loss of his job made his illness seem more permanent. He was unemployed for around year. He found applying for disability benefits very arduous, and a horrible and dehumanising experience. It has felt like a ‘tick-box’ exercise or a ‘lie-detector test’ instead of a process of trying to understand the extent of needs to cope with his disability. His family have been very supportive. They have helped him emotionally and with practical things, like providing food and doing laundry, and with navigating the healthcare system.
Callum feels lucky in many ways in comparison with some other people and has gradually accepted that he needs to adapt his lifestyle on a long-term basis. This has reduced his feelings of being overwhelmed or hopeless and has allowed him to focus on optimising his quality of life in the present and no longer feeling that his life is only about Long Covid. Callum now works part-time in a very flexible job where his symptoms are accommodated. He is very worried about catching Covid again and is trying to find a balance between precautions and living his life. Looking back over the last couple of years, Callum feels that the process of recovery feels more linear, whereas month by month it felt more up and down at the time.
Callum has not had a lot of contact with the medical profession over the period of his illness. Initially he went to his GP who said he didn’t know what was going on, but would treat him ‘like a 15 year old with glandular fever.’ His GP advised him about pacing, which has taken him time to fully understand how to apply with the help of a physiotherapist he has seen. The GP also gave him access to pulmonary rehabilitation resources online. He also went to A&E. He has had medical tests that haven’t found anything and is waiting for some more now that there is more knowledge about Long Covid. The lack of knowledge, and of curiosity about the illness and how to treat it, initially meant his care wasn’t great, and he is aware people in other parts of the country have had much better Long Covid support. He feels he’s had to advocate for access to any investigations. Recently he has found a GP who is very open and keen to find out more which is ‘the best you can ask for.’
Through his media appearances, he was contacted by an organisation that supports adults with disabilities and was offered resources and support to help learn to manage his symptoms. The self-management strategies he has learnt have been the main thing that has helped him, but he only managed this with support from others too. Callum feels this should be the minimum available to others. He thinks it’s important for people experiencing Long Covid to have access to healthcare professionals who listen and care, will guide them, and who have experience working with people with similar conditions. For Callum, it is important to accept the condition and still find meaning and quality in life, and to advocate for yourself if you feel things are not being investigated seriously. He would like to see a cultural shift to practitioners being more proactive in looking for successful treatments and the mechanisms behind Long Covid. Callum would also like more research into societal impacts of Long Covid, for example on employment rates, and other long term social impacts.
Callum would like to see treatments being approved for Long Covid and backed up with official guidelines for their use.
Callum would like to see treatments being approved for Long Covid and backed up with official guidelines for their use.
I’d like to see so step one is, is like I’d like to see the, the what the origin of what the actual mechanism is behind the illness or mechanisms behind the illness are and I think that’ll take a while. There’s a lot of competing evidence and competing hypotheses about that. But even if and therefore, the next step is, what treatment works. What treatment helps. And sometimes you need to know what the underlying mech, mechanisms are, but sometimes you don’t. Sometimes you are able to try out medicines that have kind of been found to work on an informal basis and test that out.
I would love even if they said, you know, there was, there was, you know, like, like for example there’s like these particular antihistamines which potentially could improve Long Covid outcomes that, you know, there’s, there’s, there’s evidence that, you know, is then put through SIGN and NICE that prescribing these antihistamines can make life better for Long Covid, you know.
Like something like that just like just treatment that can take the edge off or something like that like that is a bare minimum of what might be possible. And, and yeah, like, I’m very interested in pharmaceutical treatments, and I’m very interested in what things will make people better and what can move these things along. And, like, you know, that’s two of the basic kind of medical side of things.
Callum trusted the physiotherapy advice he was given because it was based on experience of working with people with long-term conditions. It helped him to speak to someone who “had seen a lot of recoveries.”
Callum trusted the physiotherapy advice he was given because it was based on experience of working with people with long-term conditions. It helped him to speak to someone who “had seen a lot of recoveries.”
And he’s been very good in that he has not, he’s kind of, it hasn’t ever felt like he has been pushing physio solutions, you know, square pegs in round holes. You know, I’ve heard of some people with Long Covid who have, you know, gone to physios and the course has always been just do exercise, do a little bit more every day, and that can push people backwards. It can be a really destructive cycle because their bodies just get overwhelmed that they don’t get a chance to recover, and people want to get better. You know, ‘My body’s pushing back but I’ll just keep doing a bit more’ and before you know it you’ve actually lost capacity permanently.
So, on that level I think that and when I have, in the past said like, to [practitioner name], you know, “Can you recommend some exercises that would strengthen my core? Have you got any exercises that would like—” It was my legs, and my feet were getting quite stiff. And it was like “Can you recommend some exercises for me?” And he happily provided sort of physiotherapy for those. And I mean he’s been doing this for a very long time as well. Like he’s been working with people with sort of chronic conditions for a long, long time. And he’s seen a lot of recoveries. And I think that he therefore was just, as much as anything else, [researchers name], it was the capacity to speak to somebody who’d seen this before. And that it wasn’t new to them. It was, you know, a different configuration. It was presenting in an interesting and different way. But speaking to people who have got, you know, have dealt with chronic illnesses know that everyone is different. That was the thing that was really valuable because it just meant that like me asking him things like, “Will I ever get better?” He’s now speaking from a place of experience like you know, there were times I would ask my mum that question because she’s a nurse and, and she would give me a very kind of like, “Of course you will” answer. But that’s a mum answer more than a nurse’s answer. And I think that was nice to be able to speak to somebody who was like, “Well, you know…” You know, like any, I remember then, I’d ask the question and the answer was basically everybody’s recovery is different. And what constitutes some people’s sort of full recovery, other people are, you know, like the improvement and the quality of life is what matters. And I think that gave me a more nuanced and a better roadmap, going forward. And I, again, I struggled to think about what it would’ve been like for me without having had that resource.
After his first vaccine, Callum felt the best he has since getting Long Covid. For a while, he was able to do normal activities without feeling fatigued, unwell or in pain.
After his first vaccine, Callum felt the best he has since getting Long Covid. For a while, he was able to do normal activities without feeling fatigued, unwell or in pain.
But the first vaccine that I had was the best I think I’ve ever felt with Long Covid. I don’t think I’ve felt that good since I was able to get up and do, you know, I did this tentatively. I didn't just jump straight into it. But I was able to go for walks with my girlfriend and feel completely fine. No post exertion malaise at all. I was able to get up and do an hour deep cleaning. Not just, you know, surfaces, a deep clean. You know, and then with like rest just to make sure I was okay, no pain. Alright, let’s do it again. I, I didn't do that when I was healthy. You know, that idea of like you know, let’s really get stuck in. Let’s really sort of get this place sorted. Yeah, I, the first, after the first jab, especially the first couple of months after that was the best I’ve ever felt. But I think I assumed that was me basically well. I’m healthy now. I’m almost back and I can start behaving normally.
Callum said the process of applying for and being refused Personal Independence Payment was arduous, “dehumanising and horrible.”
Callum said the process of applying for and being refused Personal Independence Payment was arduous, “dehumanising and horrible.”
So, but I was unemployed for yeah, just over a year and during that time I applied for Universal Credit and also Personal Independence Payment as well which is a big whiplash. That is a massive culture shock is going from, you know, like being in the professional as an engineer and then like, and everything about that and like I’m very conscious of, I’ve worked with a lot of people who are on benefits and on that side of life. And, you know like, I was always very aware of well like if ever I was in that position I would you know, take that money. I would ask for that money because it’s owed to me, like it for my support for the situation. But it’s still very strange to find yourself in that position and especially while sick. Especially while unwell.
With Universal Credit and that I signed up for Universal Credit side of things was almost fine. It was almost, you know, like it’s, it’s built for people who are unemployed. It’s very straightforward. You fill out a form online and you just get it and it’s fine. But everything that’s tacked on to help people with disabilities or with long-term illnesses is so arduous and I’m still in the process of fighting my PIP claim and I’m now taking it to tribunal because I was one point short previously of getting the award and the entire process of PIP has been so dehumanising and horrible to the point where I feel like over and over again I have to prove and articulate and specify specifically how my illness, my disability makes my life worse, and makes it difficult and, you know, open my entire life and existence wide open for them to say no. To specifically denigrate and to give frankly insulting means of rebuttal of me, you know, saying x, y, and z. Explaining in great depth and detail and then they just say, no or, you know. It is one of the worst things I’ve like, I say one of the worst things I’ve had to do, in the, in the sense of it’s just grinding. It’s dehumanising. It’s a sense of not trying to find out your needs and your disability, but as if it’s like a lie detector test from someone who you know, is just reading a check list. It is very, very difficult to like and it like I think that and, you know, that’s something which like everything really affects people with Long Covid because the condition is so intermittent. You know, you trying to prove to people that your fatigue affects you enough of the time that it would stop you from being able to do x, y, and z. And or that your brain fog or your cognition is so bad that like or that your mental health is so bad that it stops you from doing blah, blah, blah. Like the overall the fact it feels so box ticky and the fact that you can like a very nuanced and very specific account of your own life, but it doesn't fit their criteria.
Callum had done many media interviews to raise awareness about Long Covid. It helped him to feel that he was doing something “positive”, “productive and useful.”
Callum had done many media interviews to raise awareness about Long Covid. It helped him to feel that he was doing something “positive”, “productive and useful.”
But I remember sort of so I had been Tweeting about the fact that I was still sick and I had put my Facebook post I think two months on from my infection saying that, I was still sick, basically and that I was still unwell, you know, please be careful. Try not to catch it. And I’d been Tweeting about it. I’ve had some pals who ran a podcast who invited me on and I spoke about it there and then I wrote it up for a pal’s blog, which then a BBC journalist saw and I got asked onto a radio show. And, that radio show is probably one of the most consequential things I’ve ever done. Because for two reasons, one is that it then got written up into an article, into you know, ‘[City] Man still sick with Covid 12 weeks on’, which that day it went live on the BBC website, reached number four in the most read news articles across the whole of the BBC. It got millions of views. It got translated into different languages. It was probably the first Spanish and Portuguese language article on Long Covid.
Cos those areas, those language speaking areas hadn’t felt the brunt of the, the, the illness at same time as the UK did. And it kind of, you know, it still pops up like that article was huge and I was flooded and inundated with people looking for more information, looking for help. Have you got a cure? Have you got anything that can help me? And, you know, I, it started a long bit of work for me, which has only really eased off fairly recently, where I, in the last two and a bit years, I have done over 100 media appearances about Long Covid.
And sometimes I ask myself and I think to myself like why use your precious energy on this earth to say the same things over and over again. But like I think that in my illness I had to find meaning. I think as people as humans we feel like we have to find meaning in our suffering. And I think that me articulating my experiences. Knowing that this was unknown. Knowing that what I was doing was raising awareness. Knowing that what I was doing was a positive did help me in a substantial way.
And once I had had that BBC article it kind of exploded. I got lots of newspaper requests. I got asked to ‘Good Morning Britain’ I’ve had, I’ve got the unenviable pleasure of being interviewed by Piers Morgan. And, you know, I, I feel a great sense of pride and a great sense of achievement when I think back about how much I’ve done and how much awareness I raised and how much—and it basically, it was a bit of a novelty and it added to the overall unreality in the kind of surreal nature of what I was doing, I think. In some senses it helped me disconnect from what was actually happening. And it gave me a productive way of talking about my experiences in a way which didn't overwhelm me and that I still felt was being productive and useful.