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07 Jun 2022, by Jessica

We need to tell more #StoriesOfTheReality

Jessica, who has a psychosis spectrum condition, shares challenging thoughts on how mental illness is talked about. In this blog she pleads with mental health charities and mainstream media to start telling a more balanced narrative when it comes to severe mental illness to show #StoriesOfTheReality

If you used mental health survivor stories to see what life with a mental illness was like, you would think that everyone with severe mental health issues like schizophrenia became the CEO of a business or wrote a book or even was the top performing student in the UK. This is simply not the case. There’s no one particular charity or media outlet guilt of doing this, it’s ubiquitous.

Well-meaning charities and media outlets trying to provide hope are contributing destructive narratives to the conversation around severe mental illness and in particular psychotic conditions such as schizophrenia and schizoaffective disorder. Psychosis is a mental health symptom where people typically experience delusions and/or hallucinations. People with psychosis essentially experience reality differently. Someone suffering from psychosis might think people are out to get them or see things that aren’t there.

Optimism can be destructive

In the past, narratives around psychosis have been pessimistic. It was seen as a condition with no hope, and to this day, the rare instances where violence and psychosis overlap are heavily publicised in the press. However, now there is a new emerging type of story about success in the face of a psychotic illness which could be seen as equally problematic.

Many of the more positive, survivor-led stories about psychosis in this day and age have become blindly optimistic about outcomes. We need to strive for some middle ground. We need to strive for realistic narratives and expectations.

When I was a service user with early intervention services, they were incredibly optimistic for my outcome telling me most people recover. What they did not tell me is that most people also actually relapse and have a second psychotic episode too. So when i went back to work, just two shifts in, I noticed the world was behaving strangely and had to resign. Days later I was sectioned for a month. Our capitalist narrative that getting back to work is the only way we can provide value in society is extremely dangerous for people with stress-triggered disorders.

It’s natural to want to be hopeful, but you can be realistic and still be hopeful. Tell stories of people living with their illnesses and how they find hope, don’t put their hope in outcomes like getting back to work that are unachievable for the majority. A large chunk, sometimes estimated to be a third, of people with psychotic disorders do not respond well to treatment. As many as 10% die by suicide and psychosis can also be intertwined with homelessness and substance use. But these are the stories that we don’t hear.

Striving for realistic narratives

The narratives around severe mental illness, shouldn’t primarily be to change the preconceptions of the public, but FOR the people who have the mental illness so they have something to relate to.

Only 5-15% of people with psychosis are in work. but these are often the stories championed by mental health charities and mainstream media. And not only are the stories of work highlighted, but particularly extreme stories of becoming a CEO, juggling two jobs or switching career. These stories makes it feel like there’s a way to be “acceptably mentally ill” and that they are perpetuating a type of stigma, maintaining impossible expectations, not providing hope. These stories make it seem as though if people with psychotic illnesses tried harder they could achieve more, but this is just not possible for many, who have to deal with symptoms through their lives.

There’s also another kind of mental health story about how art/gardening/running/writing/video games helped someone recover from severe mental illness. It’s also destructive to think that a hobby or exercise can save us from severe mental illness. So many of these stories, and I’m guilty of writing these fluff pieces too, talk about how a hobby such as poetry or art rescued someone from psychosis. This is simply not the case, as far as I can tell, medication is the only thing that’s really helped with my symptoms, and it comes with its own burdens.

Charities and the media are also guilty of positive narratives around mental health services when they are seriously underfunded and leave much to be desired. Again, I’m guilty of writing these stories too, mostly because media outlets will not publish anything else and my mindsets alternates between hope and doom daily. Anyway, we need to stop trying to invent narratives about how psychosis changed someone’s life for the better or how their diagnosis was the “best thing that ever happened to them”. For many, heck, I would even say most, psychosis ruins the rest of their life and from the point it happens they just have to make the best of a bad situation. A diagnosis might make access to treatment easier, but that does not make it a blessing.

Giving up recovery

At first I thought I would recover completely and get my life back, with a fresh perspective from this trip to rock bottom to reinvigorate me. People told me I would be an exception to the odds because I “was not the kind of person who this happened to.” Now i realise that this was a load of rubbish and the statistics apply to me too. I will have to live with my illness for life.

With psychotic disorders, there’s a lot of talk of recovery, with different angles such as clinical recovery and personal recovery. But to be honest, I’ve found it more helpful to come to terms with the idea I won’t recover. I haven’t given up, I’m just being realistic. Instead of constantly striving against my symptoms, which I have very little control over, I can be more compassionate with myself and accept my illness and try to minimise symptoms so I can achieve the highest quality of life possible for me each day. And some days, the truth is, that quality of life might not be that high. It’s painful to say, but that’s my truth. At least, for now.

The psychosis spectrum

Although it’s not commonly used yet in clinical circles, I think that psychotic disorders should be described as a Psychosis Spectrum Conditions (PSC). From talking to other people with psychotic symptoms, it becomes obvious that we all have unique patterns of illness and symptoms. The illness disables us all in different ways. Instead of assuming people fall under a particular label, which often changes over time, such as Schizophrenia or Schizoaffective Disorder, it could be better to look at these illnesses as unique for each person with clusters of certain symptoms.

The people who approach charities and the media to tell their stories are often very high functioning. But to give a full picture they need to start approaching a diverse group of service users for their stories. The reality is that when people have jobs with a psychotic illness, it’s often part-time and they have to hide their diagnosis and symptoms from their employer. While it’s incredible for people with SMI to go back to employment, these success stories leave the majority of us feeling like failures who are considered by society to have no value because we can’t earn money. We should not champion this narrative of work = value, especially for people who are vulnerable to stress and for whom work might cause relapse.

Mental health is absolutely a political issue

I don’t know much about politics, but I do know that mental health charities and the mainstream media need to start to realise that the entire concept of recovery and getting back to work with a psychotic disorder are currently intrinsically capitalist. With the benefits system as oppressive as it is, trying to push as many people as possible back to work, it says a lot that still only a small percentage of people with psychotic disorders are able to work despite this huge pressure. Personally, for me, work is intrinsically tied to my psychotic disorder and worst periods of illness. Charities need to stop existing within the capitalist agenda and start to encourage people to think they have value outside this capitalist construct so that people who are too ill to work still feel like valuable members of society.

The thing people don’t get about mentally ill people is that many of them WANT to work. I had my dream job writing for brands for a living before I got psychosis. Because of my illness I lost my job and had to sell my house. I want to get my life back. but I’m starting to realise despite propaganda style capitalist stories in the press, I am not capable, at least at the moment, of going back to work. And this is true for many. This does not mean that I don’t succeed in fighting my illness or that I am any less inspirational.

Join me in pushing charities big and small for #StoriesoftheReality of mental illnesses. As well as writing for charities, you can also find me on Twitter @lifeinunreality and on my blog

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