What Happens When Truth is Seen as Sickness?
I have no time for the Time to Change campaign. Every person who comes out about their mental health experience reduces shame and increases openness, but there are one group of people who have mental distress who will be ignored and vilified as usual. It is those of us with serious mental distress, the ones who carry the labels of ‘psychosis’ or ‘schizophrenia’.
People who have these experiences do need to talk about it, but could you honestly say that over a cup of tea, you’d know what to say to someone who thought they were Jesus or that their body was rotting? Campaigns like to Time to Change don’t help people like me to be listened to. But it isn’t just Time to Change, most people can’t listen to us when we say things that are hard to hear, especially about the mental health system.
There is pain in going mad, which most people won’t deny. What most people don’t understand is the pain being on the receiving end of the psychiatric system. If you haven’t personally experienced it, you cannot appreciate how deeply psychiatry can hurt a person. Much of it is coercive and degrading. There is at least a death a week in mental health settings. Unlike deaths in prison or police custody, there is no independent agency responsible for investigating deaths in mental health detention. And our version of events mustn’t be believed, even if we are leaving mental health wards in body bags.
The damaging effects are large and small. I reported a sexual assault to a nurse when I was on a psychiatric ward, and told it was all in my head. On another occasion, I had to ask for toilet roll to use from a nurse, and she gave only one sheet despite me having diarrhoea. I knew any complaint to her would be seen as me being non-compliant and part of my condition, and the response would be punitive. Having a psychosis diagnosis means you are forever in a lose-lose situation. If people don’t like what you say, it can be dismissed as the ravings of a mad person. I can see why so many people with psychosis withdraw. Why say anything if your word is viewed as sickness?
I have made several complaints that have never been upheld. I know of several people wanting assaults and rapes on wards to be taken to court, but the Crown Prosecution Service were reluctant to take the cases on because the person hurt has a psychotic label. We are not allowed to have justice.
It isn’t just the overt hurt and control, it is the smaller pieces of shame, like asking for help but not having phone calls returned, or having an abusive partner but having them believed instead of me because I was the ‘mad’ one. I remember calling a crisis line when very suicidal and tormented by my psychosis and being told to go for a walk. I felt belittled and invalidated, and did end up attempting suicide and going into hospital. We can’t say no to our shaming, because it is often the only connection to the outside world we have.
The person on the street also has little idea about the difficulties around psychiatric medication. There is the presumption they are like paracetamol to be taken for relief. Some people do find relief, but it isn’t effective for up to 40% of people with psychosis. Side effects can be horrific. Who would want to talk to me with a twitching leg and saliva drooling out of my mouth? But that is not the worst thing about anti-psychotic medication. There is a huge range of studies looking at premature deaths for people on psychiatric medication. People on prescribed drugs die on average 25 years earlier than their non-medicated counterparts. But yet you can be forced to take these drugs, by forcible restraint that might feel like the rape that triggered your mental distress in the first place. A review found that between half and three-quarters of psychiatric inpatients had been either physically or sexually abused as children. (Read et al, 2008).
Psychiatric medication did numb my pain, but it also numbed everything else. I could not feel a single emotion. I didn’t laugh, and was unable to love for years. It put a pause on my pain but didn’t take it away. What tablet cures abuse and trauma? If I scream and rant about trauma or my experiences in the mental health system, it is dismissed as lunatic ravings. I have no power to challenge the system.
Luckily, I discovered creativity such as writing and art, which helped me express difficult feelings. I wrote poems about loneliness that made me feel less lonely. I also discovered something else: using creativity to talk about my experiences, makes it more palatable and understandable. Official complaints go nowhere, condemnation is seen part of my condition, but if I turn a hospital stay I had into a spoof Trip Advisor review, people will connect with it and read to the last word. I have found a way to make people listen.
The last decade I have been using creativity and humour to tell my story and the story of many others, and have been lucky enough to have work shown at the Barbican and spoken at the World Health Organisation. Creativity has not only given me a voice but power. Life is a little bit more beautiful. It has also helped me with my mental health, more than any therapy or tablet has. Although I still have psychosis and can go into extreme distress, I have a part-time job, my creative career, and meaning and purpose in life.
My book of art, writing and comedy about my experiences of psychiatry is called ‘DSM 69’. It is subversive and mischievous. But it is also a road-map using creativity t as a way to change the narrative given to me; to claim her life for myself and to find dignity. But basically it is a retaliation for all the pain psychiatry has caused me by laughing at the farcical and preposterous nature of psychiatry.
You read more and buy the book here.
I will get the last laugh.
Bio: As a child, Dolly Sen was an alien in Empire Strikes Back. She knew then she would never know normal life. Her journey as an artist has taken her up a tree in Regents Park, to California’s Death Row, to the Barbican, Tower Bridge and the Royal Academy, Trafalgar Square, and up a ladder to screw a light bulb into the sky.
Dolly is an award-winning writer, artist, performer and filmmaker. She has had 10 books published and contributed chapters to several other books, been nominated twice for a Dadafest Literary Award (2006 & 2007), and won several awards for her poetry. Her subversive blogs around art, disability and humour have a huge international following, and since 2004 she has exhibited and performed internationally. Her films have been shown worldwide, including at the Barbican. Apart from her creative work, she speaks and trains on mental health. [more]