Mental illness isn’t an individual issue, it’s a collective one - time to shift the narrative

This blog was written by May, Just Treatment’s Senior Mental Health Organiser.

** Content warning: suicide, abuse **

It’s difficult to know when my madness first started, or if it even did start, because that implies there may be an end - to which I don’t believe there is. I am mad or I have madness, I have yet to decide which resonates the most, but as Johanna Hevda wrote in their ‘sick woman theory’:

“In the Native American Cree language… one does not say, ‘I am sick.’ Instead, one says, ‘The sickness has come to me.’I love that and want to honour it.”

I too would like to honour this, although there are parts of me that feel as though madness is intertwined in the fibres of my being. The sickness of my mind has come to me on many occasions, rendering me incapable of keeping myself physically or mentally safe, yet to me, my madness has always remained, steadfast in its desire to consume me. I believe in many ways that my madness is entrenched in me, but madness to me does not equate to sickness. I do not see madness as inherently bad like society tells us to. To me madness can mean beauty, to see the world through a different lens - one that is brighter and more colourful but this lens makes me susceptible to darkness, or as some would call it, sickness. 

Alongside my madness, I have had many illnesses come to me. I talk about both my mental and physical states as I do not believe that they can be separated. Micha Frazer-Carroll uses the term "bodyminds" to describe the relationship between the mind and body, challenging the idea that they are separate domains. I do not recall a time in my life where my bodymind has worked as it ‘should’. Rare and/or mystifying illnesses have shadowed my life, leaving me bedbound too many times to count. I recall at one point being under countless hospital departments, each treating a symptom as its own entity. We often do this in the medical space; see ‘illnesses’ in silos - yet we do not exist in silos. Society, biology, psychology, history - all play a role in our experiences and we cannot simplify sickness, illness or madness to a simple biological explanation. 

My madness has been being “treated” since I was 8, when I had my first suicide attempt. At 14, 15 and 16 I had admissions into psychiatric hospitals following an almost annual cycle of ‘coping’ then ‘not coping’. My madness was pathologised; Major Depressive Disorder, OCD, Generalised Anxiety Disorder, Autism, ADHD - I was pumped full of drugs and held, against my will, for months on end. At 17 I was told by my psychiatrist that ‘I would never leave hospital’ and I would, at 18 be transferred to a long-stay ward. I was told I would die in a unit, that I had no chance in the outside world. They had applied for funding, they said, for the next year. I had just turned 17 and I was looking down the barrel at a life on a secure ward. 

What happened next is a story for another blog, but what is key is that with the support of a few amazingly defiant staff, and my tenacious mother, I was discharged. I managed to survive the next 9 years through community support; by this I mean the support of my mother, my friends, my chosen family, my wife. I was offered very little support from the NHS, often being told I was ‘too well’ for some services, but ‘too ill’ for others. This is a gap which many with madness will know all too well. 

Recently, I have been thinking about the causes of my madness. For so long I believed it was a fault in my brain, maybe some faulty wiring or an imbalance of chemicals. I have been on a cocktail of medication since I was 14, coming off them for brief instances then having to return to them much more quickly than I would have liked. More recently, I’ve been thinking about the impact of society, capitalism and trauma which are all interlinked and cannot be siloed. The abuse I endured from my father fed the sickness I acquired, but he himself was a victim of this capitalist society we are in. He was poor, mentally unwell and a person of colour - which put him low down on the neoliberal food chain, which in turn made him more mentally unwell. I also think about the pressures that were put on me by capitalism, to produce, to work, to be productive. For so long I pushed myself, linking my self-worth to my grades or my work productivity. When I wasn’t able to perform, due to my dysfunctional bodymind, I felt guilt and shame - which in turn fed the sickness. 

I also think about the lack of care and treatment I have received. Almost a decade of no support, when there were times I was struggling so severely. I think about the over half a million pounds that have been spent on my care while I’ve been in crisis, lining the pockets of private corporations who leech off the NHS without actually providing any treatment. Instead of paying a fraction of the cost for me to attend weekly therapy, it seems my local mental health service would prefer for me to be closer to death before they even think about offering support. 

Like so many young people who have lived with madness, my journey is long and complex - far more than it should be at only 30. I feel honoured to have found my place at Just Treatment, an organisation that allows me to be an active participant in change, and to use my experience and truth. It’s so empowering to organise and meet with other young people who have faced similar experiences. I truly believe that mental illness isn’t an individual issue, it’s a collective one - it’s time to shift the narrative and use our power as patients to fight for change.