Elke Hausmann is a GP, currently not working due to Long Covid.
In this essay, I want to discuss how we understand the body, and how that can leave patients with Long Covid at the receiving end of judgements. I argue that we need to put judgements aside, and develop an approach that sees the body as neutral – a body changed by a virus that causes disease, no matter what the affected patients think or do. Our bodies have always been both our own and elicited reactions from others, entangled in a web of relationships, language and culture.
Body image, body negativity and body positivity
Body image is a massive issue in a culture which is primarily a visual one like ours, where surface images of our bodies are splashed across social media in a daily onslaught, a culture that young people are socialised into, having to negotiate growing into their bodies through the lens of judgements that are constant and inescapable.
Negative body image can have serious mental health repercussions, including anxiety and depression, eating disorders, and other forms of self harm; it is also what fuels an ever expanding cosmetic surgery industry.
A reaction has been the body positivity movement, which tries to turn the negative judgements (coming from outside and internalised) on its head, celebrating bodies of all shapes and forms.
Of course, we are just talking about an inversion here, from negative to positive judgement by others over us, and by ourselves, once those judgements have been internalised.
The concept of body neutrality and the embodied mind
‘Mind over body’ is often presented as if we could do anything to and with our body, if we just put our mind to it, as if our body was just incidental to our mind and not creating our mind.
Body positivity remains on the surface, it doesn’t allow us to go deeper, to go beyond judgements. The concept of body neutrality has been developed out of a recognition of that.
Before I discuss this further, I want to introduce the concept of the embodied mind by Thomas Fuchs, professor of philosophy and psychiatry at Heidelberg University, Germany.1 The embodied mind has as its premise that there is no mind without body, the mind exists through the body. Consciousness and mental processes are not solely confined to the brain, but are deeply rooted in and inseparable from the body’s lived experience and its interactions with its environment. When our bodies die, our minds die. We all know that, but we often act as if that were not the case.
‘Mind over body’ is often presented as if we could do anything to and with our body, if we just put our mind to it, as if our body was just incidental to our mind and not creating our mind. ‘Mind over body’ often ignores the limits the body puts on our minds, on us. Many of us only find out how reliant we are (in mind and body) on our body when we fall ill, or when we get old.
Of course many people with disabilities are very aware that our bodies may restrict what we can do – they also know that in many cases the limits their bodies impose on them could easily be overcome (the social model of disability)2 if we just put in place the basic adjustments which the healthy majority simply don’t consider, because it doesn’t affect them, because their bodies let them do what they want to do.
The ‘lived’ body and the ‘living’ body
Fuchs argues that there are two ways in which we can relate to our bodies, and we can switch between one and the other. Those two ways of relating can be described as ‘I am a body’ (the ‘lived’ or subject-body) and ‘I have a body’ (the ‘living’ or object-body).3 In what follows, I’m making use of these concepts as I understand them to develop my own argument.
When healthy, it is easy to relate to one’s body as a thing (the object-body), something one does not even think about much, it works in the background to allow us to do what we want to do. When health is shattered, that body as object can suddenly come to the forefront of one’s mind, as the body is becoming a hindrance to what one can do. In that case we may react by fighting our body, fighting this ‘other’. We want to believe in ‘mind over body’, where we can essentially think ourselves healthy again (though changing behaviours). A person naturally at the same time experiences the ‘lived’ or subject-body from the inside as a whole. We often hear about the ‘body as (albeit complex) machine’ and the ‘holistic body’ as if they were in opposition,4 rather than just two ways of relating to the body.
When we don’t get anywhere with ‘the body as machine that can be fixed’ approach, we often go the ‘holistic approaches’ in which we are seen as whole human beings, where our biology, psychology and social world come together. This correlates more to the subject-body than the object-body, and in that it is attractive to a person experiencing themselves as a subject-body.
In that theory, all aspects of our unique selves need attention, everything affects everything else, and addressing various issues in those different domains puts everything back into balance and can make us healthy again.5 In practice, this often paradoxically leads to the same ‘mind over body’ approach as in the ‘body as machine’ approach, where we can think ourselves healthy again (by changing our behaviours). Curiously, we hear very little about changing the social conditions that constrain our lives, and biology is often forgotten about, or relegated to secondary importance.
From judgement to neutrality
Let’s get back to body negativity, body positivity, and body neutrality. Negativity and positivity are just two sides of the same coin, they are about outside (and internal) judgements of our body as seen from the outside. Body neutrality tries to get away from the judgement. Rather than thinking about our body as beautiful or ugly, body neutrality encourages us to think about our body beyond its surface.6 Our body serves a function; it works to allow us to do the things that we want to do: that’s the object-body. But is also encompasses the subject-body: I am more than my body, I am a whole person with hopes and dreams.
Other people’s judgements over our body don’t need to concern us. It is much more important that we view our body as allowing us to do what we want and need to do – the ‘function’ aspect of having a body and being a body.Unfortunately, not all bodies continue to function as we would like them to.
Judgements about Long Covid
Patients with ME have been very aware for a long time that they and their condition are being judged, and Long Covid patients have recently found out that the attitude to them and their condition is following the same patterns.7,8 Many patients, unless they are at the very severe end of the spectrum, don’t look particularly unwell, which makes it harder for people on the outside to look beyond the surface and see how ill they often are. From the perspective of ‘body as machine’, we have not got to the point yet where we understand what exactly has gone wrong with the object-body in Long Covid (and ME), and if and how we can mend it. Despite the constantly growing evidence as to the biological basis for those conditions,9–12 this leaves room for some to argue that the they are (at least partially) psychological.13
We essentially have two camps, the patients whose experience is that something is clearly wrong with the object-body, who put their hopes in biomedical research (and the scientists and doctors who believe them) to find a cure, and others (which includes doctors,14 journalists, the healthy general public) who either think that there is nothing wrong with the object-body, but that the problem lies in the person (the subject-body), or that there might be something wrong with the object-body, but the mind can overcome it (‘mind over body’).15 In that second camp, in the latter approach long-term ‘stress’ is often invoked, as having left a real mark on the object-body leading to illness, but ultimately the cause for that stress (for letting oneself be stressed) is found in aspects of the person or the subject-body, so leading us back to the same view as in the former one.
In both approaches, illness is seen as arising from the subject-body, not the object-body. Here the subject-body is seen as the target for intervention, not the object-body. Both approaches involve a lot of judgements. It’s the judgement that many patients have an issue with.
Either, we are told that the problem lies in our person – in who we are. This can go so far to suggest that we have brought this illness on ourselves, because we were too driven prior to becoming ill, or because we developed negative ideation once we became ill which has perpetuated our illness in the absence of a problem with the object-body. In the other case, there is some acceptance that there is an issue with the object-body (the distinction is highlighted by stating that the illness is ‘real’, not ‘imagined’), but the suggestion is still that we can overcome our illness through ‘mind over body’ – with the implied criticism that there is something wrong with us as a person if we don’t manage that and remain ill. There is judgement because either way, the patients can be criticised, as the crux of the problem of remaining ill is presented as lying not with the object-body, but the subject-body, with us.
How can we get beyond this impasse?
The only way to get beyond this impasse is for doctors and other people who are healthy to listen to patients and really hear about their experience.16
Like anyone, we experience our body both as object-body and subject-body. Most of us, before we became ill, had an uncomplicated relationship with our object-bodies that worked in the background and allowed us to do what we wanted to do. That has changed with the onset of illness, we now experience our bodies as restricting us in what we can do. We have several reactions at our disposal: one is to ‘fight’, or another to try to ‘fix’ the object-body. Many of us experience that this does not work, or can even make things worse. Thus, we learn that we cannot go against our body, but just go with our body, recognising our new limitations.
Some people do recover, and we don’t know yet why some recover and others don’t. There are those who put their recovery down to having fought their body and overcome their illness through a ‘mind over body’ approach17 (or having found some kind of quick fix they often subsequently like to sell to others),18 which is a narrative that is celebrated, attracting a very positive judgement from society overall – and as a reversal of that judgement, if we don’t manage to overcome our illness, we can be judged negatively. It has to be pointed out that many recovery stories are vague on whether they refer to the object-body or the subject-body – often it turns out that they are recounting the journey of recovering a sense of well-being for the subject-body, despite illness, more than the actual object-body returning to a state of good health.19
I have an object-body that has gone wrong. A body that previously allowed me to do things is now limiting what I am able to do.
We experience our illness as the subject-body, where our illness of course to an extent affects our whole person, and it should not be surprising that this can lead to mental health difficulties for some. Those of us who write about our illness publicly may be judged as over-identifying with our illness, it can be suggested that we are using our illness to derive our sense of self from it, or that we come to rely on our illness for other secondary gains, and thus don’t want to let it go – even if from the inside of the subject-body we are very aware that we are always more than our illness, and desperate to be free of it. This judgement is made purely from the perspective of the reader who only sees that one aspect of a person.
So, both our relation to the object-body and the subject-body can be criticised and judged. We need to get away from judgements and be able to discuss our condition from a position akin to body neutrality.
Beyond judgements
It could be so simple. I have an object-body that has gone wrong. A body that previously allowed me to do things is now limiting what I am able to do. It is a constant negotiation to understand where those limits are, since this condition changes from day to day and over time. I cannot fight my object-body. I am putting my hopes into biomedical research and the developments of treatments for my object-body, as well as time. My subject-body has altered. I am someone living with a chronic condition, but that does not mean that I have become my illness.
I know from the inside that there are things that I can do that have a beneficial effect on my object-body as well as my subject-body, which are mostly the same things that make healthy people’s lives healthier and better – and those things have not changed in thousands of years. Think about Aristotle who encouraged the cultivation of moderation. We can all always aim to eat healthier, sleep better, improve our relationships and emotional lives, reduce stress.
Exercise is a special case in patients with exercise intolerance and post-exertional malaise (PEM),20,21 and other advice may have to be tailored to the individual as well, bearing in mind the spectrum of Long Covid disease (including POTS,22 MCAS23 etc). It also has to be considered that poor diet or poor sleep might be part of the illness, rather than attributable to poor lifestyle. So it is not that there aren’t things we can do to improve our lives, but that does not mean that any of those approaches suddenly make my object-body healthy again. Needless to say, bad lifestyle can cause some illnesses, and a radical change of lifestyle can in some cases reverse those illnesses. But lifestyle changes are unlikely to reverse an illness which is not caused by bad lifestyle.
As discussed above, there are those who argue that Long Covid is essentially an illness caused by lifestyle, with the idea that it is down to ‘stress’, rather than constituting the long-term effects of the infection by the Covid virus on the object-body. Stress may have a role to play, among many other factors, in making an individual more susceptible to viral infection and illness in the first place at a particular point in time, considering what we know about its effects on the immune system,24 but whether it has anything at all to do with the development of Long Covid is by no means certain. The way stress is often talked about these days, and used as an all-encompassing explanation for the generation of illness, has more than a whiff of the good old humours about it. The four humours developed by the Ancient Greeks that had to be kept in balance to remain healthy25 have become our stress hormones and autonomic nerve impulses that we need to work hard at keeping in a delicate balance, otherwise we supposedly tip over into illness.
I don’t want to suggest that stress has no effect on the body, but just to question whether ‘stress’ as the causative factor for illness, being evoked so ubiquitously, may be applied to conditions where this is not warranted. Long Covid is a case in point. Stress can certainly negatively contribute to the illness experience; once ill, symptoms do worsen with stress and can often be relieved by removing stress.
…it also has to be said very clearly where stress for an ill person comes from – most of it comes from the outside: an inadequate healthcare system, a punitive welfare system, unhealthy work places, insecure housing – and not least, negative judgement by others, some of which may be informing those systems.
In that context it also has to be said very clearly where stress for an ill person comes from – most of it comes from the outside: an inadequate healthcare system, a punitive welfare system, unhealthy work places, insecure housing – and not least, negative judgement by others, some of which may be informing those systems. Adverse social conditions are often misrepresented as personal ‘lifestyle choices’. Without improving those, attention to an individual’s stress response will mostly not get us very far on the route back to better health. At the same time, removing all stressors and/or dealing better with stress is not in itself a cure for Long Covid.
Long Covid is caused by Covid – there does not need to be judgement about who we are or what we do
Long Covid is caused by Covid. That is the bottom line. We need to get away from the judgements around this illness. Our bodies are ill. There does not need to be a judgement here. It is what it is. The object-body can be seen as neutral – while we can influence it to some extent with our behaviours, the body does have a ‘mind of its own’. Ultimately, it develops, lives and dies of its own accord. I have a body, and I am a body.
If we all just accepted that this is how things are, we could concentrate on finding solutions, rather than constantly battle over judgements.
We need good doctors and researchers who try to find solutions with us (how can some continue to say that they offer solutions, while at the same time dismissing the patient perspective? They never consider that their solutions might not work, instead they are judging the patients whom they don’t work for).26 From our doctors, we need support, now, for our subject-body in the absence of curative treatments for the object-body (and there is plenty that could be offered already, including medication treating the object-body symptomatically),27 while acknowledging that we rely on scientists and researchers to develop more symptomatic and curative treatments for our object-bodies in the hopefully not too distant future.
We need a greater recognition from society and politics of what the Covid virus can do to bodies, long-term.
Above all, what we need is liberation from judgements.
References
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Featured image by Peter Chiykowski on Unsplash.
