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10 Jan 2022, by Jessica

Why we need to paint a realistic portrait of severe mental illness

Jessica, who suffers from a psychotic illness, believes we need to make sure we show a balance of narratives when we discuss severe mental illnesses like schizophrenia. Not just focusing on stories of full recovery or success, but on a spectrum of experiences.

Psychosis is a severe mental health issue where you experience reality differently. For me personally, this meant I saw greater significance in objects in the world around me which made me think that people were against me. I was very paranoid and I believed strange things, such as that I was on television, and that people were spying on me.

I thought graffiti and social media contained messages I could decode. I also felt a strong sense of guilt and confusion. I screamed at strangers because I thought they were part of a conspiracy and was sectioned by the police and taken to a mental health hospital where I stayed for several months. Although the treatment, antipsychotics, was effective, residual symptoms linger and I still suffer from paranoia if I am tired or stressed.

Psychosis can be a one-off event but is often intertwined with our understanding of conditions such as schizophrenia, schizoaffective disorder and even bipolar disorder. Psychotic disorders happen to as many as one in 100 people in any given year. Typically people use the rule of thirds to describe outcomes for psychosis. One third will have a single psychotic episode, one third will have several psychotic episodes but recover in-between and a third will have ongoing problems which affect their day-to-day functioning, this group are typically the worst affected and deteriorate over time.

A steep recovery journey

Although the dialogue around severe mental illness often focuses on psychosis itself, it has a steep recovery journey too, and even after the majority of symptoms have subsided many people don’t make it back to work. It’s estimated that only between 5-15% of people who have psychotic experiences are in employment.

After I had started to recover from psychosis I was hungry. Not just for the five pieces of toast I had every day at breakfast because antipsychotics were affecting my ability to regulate hunger. I was also hungry for stories of severe mental illness that could help me make sense of my experiences. So I sought these out, Googling story after story on mental health charities and in the media. I devoured them, reading every article I could find addressing psychotic experiences and washing them down with books about recovery.

There tends to be two kinds of stories about psychosis. These are either very negative because they cover the rare instances someone has been violent, or very positive because someone has recovered, or succeeded alongside their illness, for example by writing a book or switching career. Although the stories of violence are often prominently reported in the media, someone with psychosis is actually more likely to be the victim of a crime than the perpetrator. These negative stories add to the stigma faced by people with psychotic illnesses. Rather than reading the negative stories, I focused on the positive recovery stories to give me hope for my future.

A duty to publish realistic stories

At first the positive recovery stories I read were inspiring. They filled me with hope. From people who’ve gone on to forge successful careers to those who have written books after their psychosis, all the lived experience articles I could find about people with psychosis and severe mental health issues seemed to show survivors who against all odds had navigated their path to success.

These people are incredible and the stories are important to dispel myths and stigma around psychosis, but the statistics paint a very different picture. As mentioned earlier when I discussed the rule of thirds, the majority of people who experience psychosis suffer from symptoms throughout their lives and despite the spotlight being on success stories, most of these people don’t end up back in work.

Although I found the recovery stories empowering at first, they quickly became disempowering. Rather than focusing on dispelling the myths around mental illness for the general public with stories which are the exception to the rule, I think we have a duty to publish realistic stories of severe mental illness so that people with mental health issues can see themselves in the dialogue around mental illness.

We also have a responsibility to publish more fiction and film featuring psychotic characters who are relatable. The film industry, like news outlets, often demonise psychosis, painting psychotic people as villains. This needs to change in the future for us to have a balanced view of mental illness.

When it comes to the positive stories, we rely on ‘recovery porn’ to help people understand conditions by holding up inspiring stories as the example of mental health conditions such as psychosis, but we are not painting a realistic portrait of the full spectrum of severe mental illness. In the narrative around mental health I long to hear more of a balance of voices, in particular hearing from people who still struggle with the day-to-day but still find hope and meaning. I long to hear more about how hopeless it can feel to live with a mental illness.

Hope for the future

The truth is: when I went through psychosis I lost nearly everything. I lost my job, my house, most of my friends and my relationship. I spent nearly two months in hospital then had a long drawn out recovery period. I soon realised I had lost more than I first thought. My confidence in myself was shattered. I had trouble concentrating, the paranoia lingered. I would find myself believing in the conspiracy whenever I was tired. But as I rebuilt myself it was hope for the future that got my through

Psychosis is often missing in the dialogue around mental health in the media. Because of this, I clung onto the sparse number of recovery stories for dear life. I needed to believe I could get back my old life. That something good would come from this terrible experience. That psychosis would be the thing that changed my life for the better. However, in my experience, psychosis was the worst thing that ever happened to me and it destroyed my life as I knew it.

The early intervention team were optimistic so I pushed myself to rebuild the fallen pieces of my life. At first I got another job in the same industry I had worked before I got ill. After just one week I realised I wasn’t cut out for it anymore and resigned. The whole experience left me an anxious mess. I struggled to keep up with the complexities of the tasks. I was paranoid and couldn’t manage my thoughts at work. So I tweaked my plan a little and found a less stressful part-time job.

Just two shifts into my back-up plan job I felt the stress take over and I ended up in hospital again for another month. This time, I had to start my recovery from the beginning. I was right back where I started: at rock bottom.

A realistic portrait of severe mental illness

And this is where I began to realise that reading the recovery stories was making me feel bad about myself rather than good. That the success stories were showing me what I couldn’t seem to achieve. Instead of giving me hope, these stories made me feel like a failure.

Why couldn’t I succeed like the people in the stories? Why couldn’t I make psychosis into ‘the best thing that had ever happened to me’™? Why couldn’t I turn my life around and pick up where I left off? Perhaps one day i will feel like this, but i don’t now. We need to paint a more realistic portrait of severe mental illness.

If you have psychosis, I’m not telling you to give up. I’m not saying there is no hope. I’m a resilient person and I still have hope for the future. I just want us to be open about the fact that life with severe mental illness is really, really hard. Early intervention teams are optimistic about potential for recovery and it’s my understanding that this optimism is better for outcomes, with more people in the care of early intervention teams getting jobs than people who don’t engage with services. However, it’s likely that these odds are misleading because people who are higher functioning will be more likely to hold down jobs, this makes it look like having a job alongside your illness increases your odds of recovery.

There is a need to be realistic too – by being incredibly optimistic about my outcome I was setting myself up to fail. I needed to manage my expectations of what would be possible for my future.

Changing my outlook

Things aren’t all bad. Instead of focusing solely on succeeding professionally I have changed my outlook. I’ve come to accept the fact it seems unlikely I’ll ever be able to go back to my old high pressure job. I’ll probably never be able to buy a home again to replace the one I lost. And so instead, I have changed my priorities to find meaning.

I stopped drinking which helped create stability. Helping to reduce my problems with impulsivity and eliminating the suicide ideation I experienced during hangovers. I wrote a lot about psychosis which helped me understand how I felt, and let me use my experiences to help others. I started trying to find meaning in something which wasn’t the traditional version of success. I put my time and energy into the few friendships I still had after psychosis.

I am hopeful that I’ll go back to work again but I am much more mindful of my mental health now. Staying well is the priority and I need to take things slowly and be easy on myself. It’s okay if I don’t publish my memoir or buy back the house I had to sell. I have redefined my understanding of success to focus on health and happiness.

Although I’m sad for the life I’ve lost, and I undoubtedly wish psychosis had never happened to me, I’m hopeful that I will have a good quality of life and grateful that I am on medication now, which helps me manage my condition. I even have hope I will be able to go back to a less stressful career part-time in the future. But I need to manage my expectations and ensure I keep my stress levels low.

My health is my priority now. These changes to my mindset are something positive which psychosis has given me and as a result of my fall to rock bottom, I managed to give up alcohol. I’m nine months sober now, and am so grateful that I’ve managed to cut such a destructive substance out my life. These small victories, such as giving up drinking or even something seemingly simple such as going to the supermarket should be championed in the dialogue around mental illness.

Living with your illness is a success, don’t let anyone tell you anything different.

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