Psychosis and Sisterhood - National Schizophrenia Awareness Day
Anonymous - This piece was written by a FiLiA volunteer with lived experience of psychosis and a diagnosis of schizophrenia
Today is National Schizophrenia Awareness Day. As a Woman and feminist living with schizophrenia, I would like to tell you a bit about the illness, how being female has impacted my experience of it, somemore general vulnerabilities and challenges experienced by Women with this and similar illnesses, and some information about what is being done to improve things for Women. I do not claim to be an expert, but I live with this serious illness that has had significant effects on the course of my life.
Psychosis and schizophrenia
To start with, I will explain a little about what psychosis and schizophrenia actually are. Psychosis consists of three main features: hallucinations (sensing things that are not there, e.g. seeing or hearing things), delusions (strongly held false beliefs that others would not agree with), and thought disorder (difficulty organising thoughts logically, leading to difficulty staying on topic and incoherent speech). These are termed the ‘positive’ symptoms, meaning things experienced in addition to what is considered ‘normal’ (and not necessarily positive). It can also involve ‘negative symptoms’, which means something considered part of ‘normal’ experience is missing. These mean difficulties such as lack of motivation or interest, problems concentrating, social withdrawal and cognitive impairment. Not everyone experiences all of these symptoms, and they combine differently for different people. Psychosis is a symptom rather than an illness in itself.
Schizophrenia is a diagnosis generally given when people have experienced symptoms of psychosis for an extended period, and when this cannot be attributed to other causes (such as dementia, Parkinson’s, or another neurological condition). There are a variety of risk factors for the development of psychosis and schizophrenia, including genetic factors, drug use and traumatic experiences. It can be an incredibly disabling illness to live with. I am very lucky in that I have mostly been able to live a ‘normal’ life.
There are a number of myths about psychosis and schizophrenia, which can be stigmatising. It is not having a ‘split personality’ (which some people have come to call ‘dissociative identity disorder’), and it is not psychopathy (now known as ‘antisocial personality disorder’). (There are also many myths around these labels, but that is beyond the scope of this blog post.) In the popular consciousness, schizophrenia is associated with horrendous violence. Although the risk of perpetrating violence is higher in people with schizophrenia, most people with schizophrenia are not violent. I do not want to deny that when someone with schizophrenia is unwell, we can be very challenging to care for. Our behaviour can be confusing, hostile and bizarre.
The experience of schizophrenia is very isolating. Aside from the symptoms themselves, it can be a very stigmatising diagnosis and mental health awareness hasn't necessarily helped those of us with psychotic illnesses. Whilst mental health campaigns have lowered the stigma against some illnesses, significant stigma for schizophrenia still remains.
Women and schizophrenia
The specific needs of Women with severe mental illnesses like schizophrenia are frequently forgotten by society. Being female can affect the way you experience a mental illness, yet health professionals, family and friends often seem to ignore this. My own experiences of psychosis are deeply intertwined with and strongly affected by the realities of being female in a Woman-hating world. After a sexual assault at university, I started to experience psychosis. I would hear the voice of the perpetrator. Feelings of being watched and being seen as merely a sexual object morphed into delusions that I was being constantly recorded to make pornography. I would check every screw or cranny in a public toilet for hidden cameras. I would be too afraid to write down any thought, for fear it would be conveyed to him. I would sit in lectures believing that others could hear my thoughts, experiencing every intrusive memory with me. Even now, when managing fairly well, experiences of street harassment exacerbate my paranoia.
When I have sought help for these experiences I have been repeatedly dismissed. I have told professionals directly that others can hear my thoughts or that I am being constantly watched and been told to watch and wait while my mental health worsened. I have been inappropriately referred to professionals who did not have the skills to deal with worsening psychosis. Being a young Woman, along with a more characteristically female presentation (less aggression, anger being turned solely inwards), has contributed to the dismissal of symptoms that put me at considerable risk.
Women experiencing schizophrenia have certain characteristics, vulnerabilities and challenges. These are certainly not unique to this illness, but nevertheless important to discuss.
Traumatic experiences can be a risk factor for psychosis, as for many mental health conditions. Women who have experienced severe mental illness, including psychosis, are likely to have experienced sexual violence or domestic abuse . There is some psychological research suggesting a link between childhood sexual abuse and voice hearing, particularly pertinent to Women’s experiences of psychosis. Although trauma is not the only factor that contributes to psychosis, it can have a significant influence on the way we experience it.
When Women are unwell, we are more vulnerable to male violence. Many Women and girls have experienced sexual assaults and rapes in mental health wards. Women and girls are in wards at an extremely vulnerable time in their lives. If you're experiencing psychosis, you may not understand where you are or what is going on. The use of single-sex wards can lower the risk from other patients, but male staff in single-sex wards still abuse their positions. In community mental health settings, professionals will also violate professional boundaries with extremely vulnerable patients.
Women hospitalised in psychiatric wards experience difficulties with menstruation conditions. The provision of sanitary items is found inadequate by many Women. Sanitary items are controlled by staff, impacting dignity and independence, worse when dealing with male staff. Some Women are asked to prove they are on their period in degrading ways. A recent report commissioned by the National Survivor User Network (NSUN) has brought greater attention to Women’s needs around menstruation in psychiatric wards.
As with the rest of medicine, female biology is frequently ignored. Women's biology impacts on our experiences of psychosis. For example, symptoms can vary with the menstrual cycle. Schizophrenia generally starts in late adolescence or early adulthood, but there is a second peak of onset for Women at menopause. Some Women experience psychosis in the postpartum period, which generally has quite a sudden onset and can be a time of great risk for both mother and baby. There are key interactions between Women’s reproductive biology and our mental health, and these are barely known about.
These issues are also common to Women experiencing other mental illnesses, as well as many autistic Women and Women with learning disabilities.
It is imperative that feminists recognise the difficulties and vulnerabilities of Women who experience severe mental illness including schizophrenia. Don't forget we exist and try to have empathy with us. The nature of our illness means that we have some unusual experiences, and we may not always be the easiest to deal with ‒ but do your best to maintain sisterhood and solidarity. Experiencing delusions about male violence towards you doesn't negate the fact that you have experienced very real male violence. If you are a professional, please keep this in mind.
Working for Women with severe mental illness
Many services are doing their best in a difficult environment of austerity, but this still results in inadequate care for all people living with severe mental illness.
WISH works with Women whose mental health needs mean that they become involved with mental health services or the criminal justice system. Agenda Alliance do valuable policy work relevant to the mental health needs of Women and girls. We Are Nina raises awareness about female suicides, particularly after men’s violence and state agency failures. Action on Postpartum Psychosis specialises in postpartum psychosis, providing information and support to mothers with experience of postpartum psychosis and their families. In many parts of the UK, there are now perinatal mental health teams to help Women with mental illness during the perinatal period.
The Care Quality Commission wrote a report about sexual safety in mental health wards in 2018, and the Royal College of Psychiatrists, along with various NHS trusts, have tried to make improvements. However, it is inexcusable that abuse like this still happens to vulnerable Women and girls in mental health wards.
There is beginning to be more research around the needs of Women with mental health problems around menstruation and menopause, including a recent academic conference as well as the NSUN report mentioned above.
There are also organisations such as Rethink Mental Illness (previously the National Schizophrenia Fellowship) that do work around serious mental illness. Rethink, along with several other services, can also advocate for people in various mental health settings.
Although there is a great deal of good work happening to improve things for Women with mental health problems, not enough is being done. It does not reach the average Woman experiencing psychosis. There is a need for deeper consideration (especially from healthcare workers) of the specific circumstances and experiences of Women with psychosis and schizophrenia, along with those of Women with any mental health problem.
I would like to thank you deeply for listening, we are so seldom heard. If you encounter Women with schizophrenia in your personal or working lives, please listen to us, and consider the impact of patriarchy on our illness. See us as whole Women, no matter how difficult that might be. Be empathetic towards our struggles. Do the same for those who care for us (often Women!). Your sisters need your support.
Finding FiLiA
Finding FiLiA and the Women’s liberation movement more generally has allowed me to contextualise my experiences. Developing an understanding of male violence and patriarchy means I can link my symptoms to my experiences of male violence and better understand the societal influences on my mental health. Although I have a chronic diagnosis, having this kind of understanding makes it much easier to live with. Being part of this compassionate sisterhood has given me strength in difficult times.