Chronic illness has been neglected for too long
Long Covid is just the tip of the iceberg in the neglect of long-term chronic illness, argues Lee de-Wit who caught Covid-19 in 2020 and is still suffering a year later.
Margaret Attwood Handmaid’s Tale articulates a dystopian vision of a state that privileges the “freedom from” over the “freedom to”. That tension in the responsibility of the state is always a challenging one. As the UK government eases lockdown restrictions today, they have clearly privileged “freedom to” over “freedom from” Covid-19 infections, especially for younger generations who are not yet vaccinated.
As cases rise, and restrictions ease, I find myself much more hesitant than many of my friends to enjoy our new freedoms. I caught Covid-19 back in March 2020. Friday the 13th was the first day I started isolating with symptoms. Little did I know that I would still be suffering from my infection with Covid-19 over a year later.
My experience of long Covid has been fairly typical. I had a rough acute infection. I did go into hospital for some tests after my breathing suddenly got worse. But my condition was never life-threatening.
As the weeks went on however, my breathing improved, but the rest of my health didn’t. As someone who was used to throwing myself into my work, and regularly going for long cycle rides, I found Covid-19 had not only undermined my health, but so much about what I took for granted that I found satisfying in life.
I was lucky that my GP took my long-term symptoms seriously, and referred me to Addenbrooke’s. I say lucky, because at that stage “long Covid” wasn’t acknowledged. Although perhaps it wasn’t entirely luck. As a confident white male, I also never experienced any medical professional questioning whether my symptoms were ‘all in my head’, something I’ve read so many others (and often women) experienced before long Covid was recognised.
Even the Addenbrooke’s specialists got my prognosis wrong however. I remember one of them confidently telling me I would be back on my bike in a few months. They were wrong. I didn’t earnestly get back on my bike until spring 2021, and even now, over a year later, I can’t go for a long cycle without risking a relapse in my chest pain and fatigue.
I know those doctors were doing their best, with a virus that we didn’t know much about at that point. The more my symptoms lingered however, the more I discovered overlap with other forms of ‘post-viral’ syndromes. The more I reflect on this, the more I suspect the medical profession could have anticipated long-term consequences of such a serious infection.
I say this reflecting as a patient, I know I am not qualified to make a medical judgement, and I’ve not systematically reviewed the data on this.
But I feel compelled to highlight what I see as the neglect of long-term chronic illness within the medical profession because this is very personal for me. Not just because I had long Covid, but because my Mum also suffered with a long-term chronic illness after an infection.
Her illness was never really properly diagnosed, she was bounced around different parts of the NHS for years, between different specialists who couldn’t identify what was wrong, sometimes wouldn’t acknowledge that anything was wrong, and who took a long time to identify any positive treatments.
My Mum loved her work, but her illness meant she had to give up her job as a health care assistant. One of the things that has made me most angry during this pandemic is reading stories of medical professionals who have come down with long Covid, after catching it at work, who have not been able to recover and have then lost their jobs. I have been extremely lucky to have had a very flexible employer, and to be able to work from home, and return to work gradually, which I think has been critical to my recovery.
As the easing of lockdown restrictions makes it so difficult for so many people to maintain freedom from infection, I think the government has to do more to ensure people can recover from long Covid. Part of that recovery has to include financial security, the recognition of long Covid as a reason to claim disability allowance, and an ability to return to work on very flexible terms.
More widely however, Covid-19 has been an eye-opener for me in how many people share my Mum’s experience of long-term chronic illness. Ironically, my own recovery has massively benefitted from these patients, because I actually found their advice on how to recover more helpful than anything I received from the medical community. It helped me understand that one doesn’t “rest” one’s way out of a long-term chronic illness, but that the gradual return to different activities needs pacing in really carefully structured ways.
I also became aware that long-term illnesses are more common in women. Would long-term illnesses have received more attention if they predominantly impacted men? I can’t help but wonder.
I am glad to see more research going into addressing long Covid, but when I’ve watched online panels discussing long Covid, I have been struck that it is often patients in the (virtual audience) who have been asking questions pushing the ‘experts’ to think about the overlap with other forms of long term chronic illness.
It is important long Covid has got the attention of research funders, but I suspect that it has only caught so much attention because so many people have developed a long-term chronic illness at the same time. I really hope the wave of Covid-19 infections forces a wider awareness of the chronic illnesses that result from different kinds of infections.
I should be clear, I am not laying any blame with the NHS here, front line professionals can only diagnose people, and offer treatments if the research is there to back up what treatments work. I suspect part of the neglect for long-term illness stems from the fact that it is a condition that requires holistic thinking about the entire individual, their physical activity, their mental activity, their diet, their sleep, their work, their social support network. Research often isn’t well structured to cross disciplines and areas of expertise, particularly for hard to define conditions that do not fit into neat boxes. Research funding is also structured in ways that can make it hard to study interventions that require long time scales to implement and follow up.
Despite those barriers, I suspect from a purely financial perspective the investment in that research will pay off in helping get the working-aged people who are most often affected by long-term chronic illness back into work.
If our economy does benefit from the easing of restrictions (which the government clearly hopes that it will), then we also owe it to those who will develop long Covid to do the research needed to develop the treatments which will give them the freedom to return to the lives they previously took for granted.
Lee de-Wit is Fellow in Psychology at Trinity Hall, Director of Studies in PBS and a University Lecturer in Political Psychology.
Main image: Lee de-Wit during a cycle through Swaledale in the Yorkshire Dales