Author: Hannah Zeilig, London College of Fashion, University of the Arts London, London, UK and University of East Anglia, Norwich, UK
For the most part, I have been confused by conversations about mental illness (or is it mental health?) during the COVID-19 pandemic. There has certainly been a lot of conversation. Ordinarily, this would strike me as positive. Finally, we are talking about the gritty reality of living with mental distress – which to my mind is the only way we can begin to confront and then combat the stigma and profound shame that afflict those of us with severe mental illness. However, for the most part the content of these conversations has not resonated meaningfully with me or with the many others that I know, who live with severe long-term and apparently [1] incurable conditions such as bipolar or schizophrenia.
The discourse of mental health during the pandemic years of 2020 and 2021 has mostly focused on the stresses and anxieties that everyone must be struggling with. Headlines have concentrated on how, for example, concentrated on how, for example, two thirds of adults in the UK ‘report feeling somewhat or very worried about the effect COVID-19 is having on their live’ [2] (well yeah, I get that). There have consequently been large scale studies (at UCL, KCL and elsewhere no doubt) that focus on the psychological and social effects of COVID-19 on mental health, again for everyone. All sorts of media have exhorted us to exercise, meditate, meet friends on-line to combat isolation and places of work have provided desk yoga as part of their mental health and wellbeing offer. As ever, this is mental illness ‘lite’. The sort of mental health issues that are discussed are relevant and recognisable to people who are fortunate enough to have a ‘touch’ of mental illness (or is it health?). Which reminds me of the occasion when, following a hospitalisation, a colleague empathised with me by saying that she too ‘had a touch of bipolars’. She meant well and I was glad she said something, most people can’t, but imagine saying something similar to someone with diabetes.
Nowadays, it seems, everyone has experience of mental distress and during the pandemic we were all ‘in it’ together, suddenly everyone I know had some sort of mental health (or is it illness?). This apparent universality of experience has not, unfortunately, enriched our conversations about mental ill-health. On the contrary, the discourse is mostly drained of substantive meaning by a relentlessly upbeat emphasis on what can be ‘done’ and above all the imperative that we as individuals should be doing something. It is even harder for those of us who live in the frozen tundra of depression and with the interruptions to our lives brought about by bouts of psychosis, delusions, paranoia, what is know as mania, those of us who are judged unreliable and have therefore come to see ourselves as unstable; it is even harder now for us to speak about our experiences. We know that although yoga is okay – it is expensive and meditation generally won’t work to calm our minds. Many of my compatriots have been so isolated for so long that it is more a way of life and the pandemic has made little difference to this. Those of us with severe mental illness are sceptical, for the most part we have tried every sort of therapy available (drugs and talking) and we are also frightened. The world doesn’t treat us gently and we are unheard. Nowadays, the conversation about mental health (illness?) has been dominated by people who talk articulately about feeling a bit nervous about the future.
For these reasons, it is now more important than ever before to foreground the voices and experiences of people who live with long term mental illnesses. This has recently formed the focus for work that my colleague Corinna Hackmann and I have been collaborating on [3]. In this study, I drew heavily on my own experience and worked with other experts by experience to think about how we might effectively support people with pre-existing mental health conditions during COVID-19 now and as we slowly emerge from the worst ravages of this pandemic. Despite the intense difficulties reported by many it was also notable that those we interviewed reported on their skills and resilience and how these had been helpful in coping with some of the exigencies of the pandemic. The innate resilience and extraordinary coping skills of those who live with mental illness are mostly unappreciated. Mental health services are likely to be re-configured in the wake of the pandemic, the emphasis on remote delivery will probably persist. Yet, to understand how to effectively support people in the future, service providers, researchers and clinicians need to ask the right questions and listen carefully to answers that may not be those that were expected and then act. This may provoke new and more meaningful conversation about mental illness and health – something that has been needed for centuries.
Author: Hannah Zeilig (London College of Fashion, University of the Arts London, London, UK and University of East Anglia, Norwich, UK)
Article: Foregrounding the perspectives of mental health services users during the COVID-19 pandemic
Journal: Mental Health and Social Inclusion, vol 24 iss 3
[1] I write apparently knowingly, because there is a body of research that questions the biomedical assumption that mental illness are incurable (see the work of Joanna Moncrieff, recent studies from University of Tromso in Norway).
[3] Zeilig et al (2020) Foregrounding the perspectives of mental health service users during the Covid-19 pandemic. In Mental Health and Social Inclusion.