In the first blog post in our series #NSUNCovidLife, Diana Rose explores the paradox of Covid-19 and ‘extreme vulnerability’.
The particular and general in a crisis
This blog is at root particular but I hope goes well beyond my own experiences. We are social beings and given similar circumstances will act within vaguely similar ways at least. And we have imaginations, so if we have one thing in common then imagination can plug at least some gaps about other things. And right now there is a shadow hanging over everyone even if we react in different ways through material and symbolic inequality, but there is empathy. This shadow is the COVID 19 pandemic that has forced me to think through some very unsettling feelings. This is not a matter of pathology, although I am indeed a nutter.
But back to the present. My particular story starts with a letter – from HM Government. It tells me I am ‘extremely vulnerable’ to COVID 19 because of ‘underlying health conditions’; that if I contract the virus it will become an extremely serious illness. And so I must cease all face-to-face contact with other people. Everybody is supposed to self-isolate – this is self-isolation on stilts. I can’t cross the threshold of my front door, as I am obliged to ‘Shield’. There are a million and a half of us so I am not alone in this and am far more privileged than most. Still, I feel sectioned in my own house with my partner doing close observations.
The Paradox and its ramifications
I certainly do have many ‘underlying conditions’ – mental and physical – but what has put me here is ‘immunosuppression’. My immune system does not work so it cannot fight infection. And here is the paradox: I am getting special attention because of COVID 19; but also NO attention because of COVID 19. Appointments for treatment and support for my many ‘underlying conditions’ have dissolved into a COVID sea. Some have been replaced by phone calls (physiotherapy?) but most have been cancelled with no news of when normal service might resume. Of course, I know that it is right that all medical staff should focus on the pandemic, although it would be rather odd to die of something which is being assiduously protected so that you don’t die of the ‘other’ thing.
So they should leave us be in terms of other health conditions (but not in terms of money, housing and a hostile environment). I understand that. And yet I feel abandoned. They have gone. They have left me. So what’s at all interesting about that? People are not rational and it is hardly a dramatic response. What is odd about it, and really hard to get your head around, is that I don’t actually like most of the doctors and other health professionals I see. More than that, some of them I deeply resent and some of them I blame for making conditions worse and practically unbearable. I deeply resent having a diary full of medical appointments at all. Even worse, in terms of mental health and pain particularly, I have committed these thoughts to paper extensively over 20 years, I have theorised and done studies focusing on what is with medicine, and mental health in particular, from the perspective of patients. I have a reputation for being a critic of the way medicine operates. Yet here I am wishing I could see them, dying for an appointment, being grateful when someone calls and generally feeling the ties that bind, my supports, have been all cut up. Especially in psychiatry. I want the people whom I have argued work in a deeply flawed and fundamentally unethical system to come and help me. You may not believe it, but that was a very hard sentence to write.
Is this just me?
And then I think, maybe I am not the only one in this predicament. It is just the paradox of COVID 19 that has forced me to look at it. Other people, after all, go to A&E with cut wrists or having taken an overdose, they are treated appallingly, the idea of compassionate care is a joke. Then another crisis hits resulting in more self-injurious actions, and back they go to A&E knowing how they will be treated. And people go back again, and again, and again. They go back even if they have been physically ejected before. And now, with COVID, when someone does seem to have solved a problem and it turns out they have just made it worse, you enthusiastically make another time to phone them in 4 weeks time
Physical medicine is generally less troublesome but similar things can happen on a smaller scale. A treatment doesn’t work, you try the next level up and the condition worsens and then you go up again with the same result and again. And again. What stops it is the doctors themselves admitting there is no more they can do. And you are devastated. But not, of course, surprised because long ago this outcome had become highly probable. I wrote about pain doctors as ‘charlatans’ and yet I continued doing what they suggested. Obedient.
What is governing this?
I do not think this realisation and the hopeless hope it involves is some kind of self-punishment; I do not think it is self-deception and I definitely do not think it is attention seeking or attention seeking to the point of Munchausen’s syndrome. Nor Stockhausen syndrome. I don’t even think it is simply a wish: one daythey will cure me although surely there are elements of that. Is it a stupid contradiction at root then? Is it using logic and abstraction (in my case) to hide an impossible secret? Or building walls of unnecessary height to keep off threat at a different level entirely? I could go on but there is something wrongheaded about pathologizing the way you deal with a real pathogen. I believe at least some people reading this will recognise bits of themselves in it. Of course, others will not identify with it. The first group – those who recognise themselves – are also likely to appreciate the fundamental difficulty of admitting this to oneself – psychically and socially. Have I been misleading my friends for 50 years by actually wanting, at some level, what I have spent my life taking to bits?
Exceptional vulnerability again
And back to COVID. I have noticed that there is very little in the media about this ‘extreme vulnerability’ with which we have been labelled. Except when deaths are announced, inevitably accompanied by the information that the deceased had ‘underlying conditions’. And recently, although often not explicitly, that there will be rationing in the NHS: rationing of ITU care, rationing of ventilators, rationing of those practices and machines that can save your life. And it is pretty clear that these ‘extremely vulnerable’ people will be rationed out if they catch COVID 19. The greater the pressure on the NHS, the more likely we are to be squeezed out of life.
To the extent that the public narrative focuses on anything other than physiology and death, it is loneliness and our interdependence that dominates; the degree to which we depend on each other that is emphasised. There is such a thing as society after all. But if you are someone with an overwhelming health condition or just an awful lot of them then doctors are part of that human world in which we are interdependent. They are just pretty unimportant for many; we may not want them, they may even, if we use mental health services, force their treatment upon us. But they are not robots. Maybe unwelcome, they are part of the web of interdependency which everyone knows about but not everyone has as part of their human world. It’s not even that they set themselves on a pedestal – which , irritatingly, many do. Or that they can be totally toxic which is true. It is the opposite: they are human and that they share with you. They may not share much else, it may not be readily apparent, but it is a pretty fundamental tie.
Imagining a future?
So do we just leave it there? Something understood? That’s not possible. In the first place, there are people in the doctoring world who are evil and do real harm. This piece is not ethics-free. There is no agreement on what counts as evil but this needs to be surfaced. Equally there are practices – from coercion in psychiatry to heroic end of life care – that need to be interrogated, minimised and sometimes outlawed. But more significantly, I think there are just too many doctors. Each new diagnosis, each new subspecialism, requires its own cohort and so doctor-types multiply alarmingly.
There was a time recently when I had ten consultants – TEN. They worked in silos, they never talked to each other, amusingly they referred me to each other when a problem escaped their narrow expertise. The digestive system now has five sub-specialisms. Well, contrary to some, we are not made up of ‘compartments’, and we could radically cut the number of doctors by being much more integrated and holistic. It is not a new conclusion – it is just coming from different premises. So even for people with multiple conditions there would just be far fewer doctors in their social world and so they would lose everyday dominance.
So fewer doctors and associated staff. But – reconfigured how? More folk willing to help out; more community resilience and an appreciation that illness does not make you an outcast; and a properly paid social care workforce who are practical, friendly and even when decently paid cost a whole lot less than ten consultants. Again, COVID is showing us the possibility of this, it also shows the problems, we don’t know if it will outlast the pandemic but at least we know now it is possible. Neoliberalism is, after all, breakable.
As a mental health activist and researcher I would love to say that we can replace medical expertise with peer support. But I can’t believe that, at least for the industrialised West. It should be central but has limits. There comes a level of intensity when some people are just too hard to support; their behaviour is beyond comprehension and it is frightening for the moment. We do not want to replace one set of ties with another where guilt, resentment or anger, become the dominant relations to some persons. Interdependencies depend on tradition and culture, they depend on the environment, they depend on resources financial and otherwise. But a basic is that no one person should have too much responsibility for extended periods of time and particularly invisible responsibility. Socially, we need to be flexible, variable, local or based on identity groups (including Madness) so that support is distributed – light sometimes for many and periods of dedication, but short, for others. Some people can do little but should be praised for whatever is possible. Expertise is not dispensable; some specialisation is needed. But the accorded different activities, from bin-emptying to architecture, should form no hierarchy – of knowledge, of values or of practice. Fairyland? Perhaps. But surely now our ideas of both the possible and the normal have turned upside down. Play with it.
Love – the final frontier
And my final words are reserved for those we love the most. I am in fact not going through this imprisonment alone. There are friends to catch up with remotely. But I also have a partner who opted to ‘Shield’ with me rather than be able to go out but have to avoid me like the plague (literally) when returning home. I hate the word ‘burden’ when applied to those of us with long terms conditions. He hates it even more than I do. But – listen up everybody – society, including medics, should not assume that a long-lasting, loving relationship can be turned in a couple of months into an asymmetry where one person is (im)patient and the other does all the work. Emotional labour? Recognise it, of course. Multiply it, depend on it and at the same time hide it – no way! I end by going off topic. That is a consequence of COVID too, topical in so many ways.