Mental health concerns among young people, the elderly, and working adults have never been so prominent in the public imagination. Members of the Royal Family and many charities devote themselves to tackle mental health like never before. Public outcries about suicide, self-harm, homicides, and failures in care processes galvanise efforts to find better support and care. We must do more and develop better approaches to support and care.
The conceptual confusion between mental health and illness does not help the research endeavour, accepting the term mental health is deployed to minimise stigma, to be positive and optimistic, promoting the importance positive states of mind and prevention principles. Many people suffer with persistent states of emotional distress (let’s say), which may or may not be ‘felt’ or ‘known’ as a mental or psychological phenomena. They may experience distress in bodily complaints, lack of function and energy, and attribute their problems to interpersonal relationships and crises. Explanatory models may not conform to the bio-medical or broader mental health system’s notion of diagnoses, illness, and what might help. This is not a provocation for nihilistic dismissal of diagnosis, or mental health campaigns, or a desire to restate that we have made insufficient advances in the care and support for people with mental illness. Rather, we must re-imagine the limitations and futility of diagnoses.
As a society, through investment, we have addressed threats like COVID-19, HIV, and we are making good progress towards tackling cancer, heart disease, and premature mortality more generally. We are making little progress on reducing premature mortality faced by those with mental illness, or the drivers and consequences of inequalities. Some people are more vulnerable than others to infectious agents as they are to adversities like trauma, loss, poverty. Socio-economic conditions and contexts influence vulnerabilities through social (isolation for example), psychological (self-defeating schema for example), and biological mechanisms (immune function for example). These rarely feature in diagnostic categories although there are ICD codes for social determinants. In fact, mental illness is not unique in facing these challenges. Rather than consider mental illness a special type of health problem more influenced by psychosocial contexts, we know in utero stress, early life adversity, and sustained marginalisation, discrimination, stigma, poverty, and living in precarity leave health imprints (mental and physical and social) throughout the life course. Mental health and physical health are equally socially distributed, and susceptible to these complex webs of causation.
In order to expose the conceptual and ontological confusions in practice, and the lack of conceptual tools amongst researchers and clinicians, I have established a line of work that embeds ethical discourse and questions of diagnoses within research methodologies. The experience-based research I lead privileges lived experience as important data, adopts methods from anthropology, sociology, and creative arts, to tackle health inequalities. It is not easy to share experiences of pain and recurrent marginalisation, discrimination, and victimisation. Creative methods (participatory, artistic, co-design) are gentler and offer empowering ways of assembling new knowledge and deepening that knowledge without relying on verbal literacy or readiness for research. Therefore, these methods, I consider, are better at exposing a complex lesser-known worlds which people living in precarity inhabit. The best statistical models are not very good at prediction about how these influences operate for specific people or groups, and may not include relevant variables, especially as those living with multiple adversities would normally be excluded from studies or not participate.
The research from my group seeks to link experience-data with the best epidemiological and statistical models and gives us a better chance to reformulate what we mean by illness and disease. We must hear about the real lives of people living in precarity, rather than only attend to diagnostic relevant aspects to test against our scripts. Listening to these accounts is not easy, and avoidance (conscious or unconscious) is not uncommon, like a post traumatic response. Therefore, caring for researchers, with support, compassion, kindness, and flexibility is an essential component of research teams working with such marginalised groups. Only then can we recognise historical, early life, contemporary, and ongoing adversities, and their interaction with our biological (brain/mind/body) affordances. Looping effect between our environment, our thoughts, meaning-making (in groups, families and cultures), biology, and behaviours require us to re-think research, practice and policy to capture these dynamics.
We need more systems based and socially situated research, as well as deep dives into specific illness/disease entities, and experimental designs to isolate specific mechanisms for more effective treatment and prevention. For example, emotional dysregulation and impulsivity due to trauma and adversity are pan-diagnostic mechanisms leading to health risk behaviours, poor mental health, and poor outcomes. Eco-social models of illness do not privilege one or other mechanism, or bio or socio disciplines, rather these introduce ecology and complexity as contexts to explain why some people die before their time, and why some do not benefit from our research or clinical services.