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COVID-19 and the stigma of chronic illness: an insight by Neil Vickers

We are pleased to publish some insights by Neil Vickers, Co-Director of the Centre for Humanities and Health, and Professor of English Literature & Health Humanities at King’s College London, on the social stigma of chronic illness in relation to the COVID-19 emergency.

When the Covid epidemic began to unfold, many medical humanities scholars wondered if it might offer the healthy and the able-bodied a glimpse of what daily life with a chronic disease is like. There is no doubt that for a time at least, it increased awareness of our shared vulnerability as humans. But in my view, Covid has illustrated something else: a profound resistance on the part of the healthy and the able-bodied to knowing anything at all about illness. This motivated disposition not to know takes many forms.

The American physician writer Eric Cassell likes to say that

health is a mode of omnipotence.

Of course, it’s not just a mode of omnipotence, but it is also that. Omnipotence is probably highly adaptive, for which of us would take any risks if we allowed ourselves to know how fragile the threads of health really are?

Now, you might think that the experience of lockdown was an ideal opportunity for the healthy to try out daily life as it is experienced the ill, the disabled or the frail elderly. But if the UK experience is anything to go by, you’d be wrong! One of the most overlooked features of any illness is that it results in a spontaneous group sorting process. Everyone has to decide who they are for the sick person. To which group do I belong? Am I a friend or an acquaintance? If I’m a friend, how close a friend am I? Should I not get out of the way to let the patient’s regroup with his truly significant others? In most illnesses, a pecking order is established. A peripheral group hives off from a core group. Now, an almost fact about the lockdown was that everyone was deemed to be in the core group. We were all looking after one another because we were all either sick or potentially sick. This universality had the perverse though perhaps not wholly unexpected consequence that the lockdown was experienced merely as an anomaly. It did not bring people closer to the daily lives of the sick.

Illness is something we consign to the night-time side of life,

as Susan Sontag said. I don’t know what it’s like in Italy but here in the UK the media are quite obsessed with blaming the young for the rise in cases. It is as if only the young had forgotten the existence of Covid. But in fact, by the late Summer society as a whole was very bored of the pandemic. If you walk into central London, lots of people have stopped wearing masks. Covid has drawn attention to society’s reliance on an army of often low paid workers, from cleaners to daily carers to psychological therapists. Will we value them at their true worth when this crisis ends? Many of the biggest outbreaks in the UK have been in meat factories and poultry farms where migrant workers live in extraordinarily cramped conditions to which we have long turned a blind eye. Will we pay any attention now?

One of the revelations of Covid has been the fact that the healthy and the able-bodied are far more willing to imagine acute illness than chronic illness. This is something anyone who watches hospital soaps on TV knows well. Our culture is wedded to the ‘rescue fantasy’ side of medicine. We’re more reticent with chronic conditions even though they’re the ones most of us experience and encounter most of the time. As the French philosopher of medicien, Celine Lefève has remarked. acute illness is paradoxically both frightening and reassuring: it allows us to imagine the disease as a crisis, at the individual level for the patient, and at the collective level for society. The disease is imagined as a transient episode, a nuisance, limited in time, with a beginning, a middle and an end. Chronic disease is quite different: it is an endless ordeal, bound up with life, which demands other ways of thinking and other narratives.

Coverage of the disease on the main news channels has focused understandably on the very sick and the dying. Perhaps the footage that will be remembered longest even in the UK will be the scenes from the hospital in Bergamo that was overwhelmed by hospital admissions. The fact that hospital admissions crises were highly localised – there was no crisis in Rome or in most of Italy – has been ignored. At the same time, people whose Covid is becoming a chronic disease and who have been suffering from disabling symptoms for several weeks – what we call in English ‘long Covid’ – have received little coverage, either in the press or on TV.

I mention this because the so-called second wave of Covid is likely to be far less deadly than the first. In the Spring, it was assumed that the only way to protect ourselves against Covid was through lockdown and the limited amount of herd immunity conferred by those who had contracted the infection. We would wait for a vaccine! Very few considered the possibilities of pre-existing immunity, genetic differences in population susceptibility, or differences made by the type or amount of viral exposure. Nor did they take account of the improvements in treatment techniques. They did not quantify the effects of handwashing and other hygiene measures such as social distancing or wearing masks, or shielding people in groups known to be vulnerable. We may even be much closer to herd immunity than is generally supposed (Karl Friston and Sunetra Gupta are arguing this in the UK right now). For all these reasons, it is likely that the care of Covid patients will become less of a priority and that some of the most important lessons of Covid will be forgotten.

Listening to and taking account of the voices of the chronically ill or disabled now would allow us to register the ill and those who look after their welfare in the widest sense. Such information would be very valuable in formulating and debating health policy choices. But the signs are that we are doing the very opposite. The prioritization of Covid has virtually wiped out chronic care services in the NHS, i.e. reduced them to close to zero. I would be very interested to know the situation in Italy and elsewhere.

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