"Let’s make people experts in their own mental health"

Jessica, who experiences Schizoaffective Disorder, discusses her idea of creating distance learning courses for mental health conditions so that people can become experts in their own illnesses.

I have become an amateur sleuth, my investigation mainly centred around psychotic disorders and what we know about them so far. I trawl scientific journals when I have the energy to read (as the so-called negative symptoms of psychosis affect concentration and memory and make reading harder). I have a social media account where I ask other sufferers questions about my symptoms and we share knowledge and experiences like a group of detectives researching the crimes against them by mental illness. This helps equip me with the knowledge I need to have informed conversations with my mental health team.

When I first went through psychosis, a condition where you interpret reality differently and experience symptoms such as delusions, hallucinations and disorganised thoughts and speech, I wanted to know everything there was to know about it. Once the delusions were more manageable, I took a Level 2 in Working With People With Mental Health Needs via distance learning at my local college. This course was free as long as I completed it but if I dropped out there was a fee.

This course enabled me to start to educate myself on mental health issues and better understand my own. This helps me better manage my psychotic illness and opened my eyes to the struggles of other people with mental health issues too. It was one of the first steps in becoming an expert in my own illness and identifying overlapping illness traits of mental health conditions such as Obsessive Compulsive Disorder (OCD) as well as neurodiverse conditions such as Attention Deficit Hyperactivity Disorder (ADHD). I’m autistic and dyslexic, so as well as having a psychotic disorder (at the moment I have a diagnosis of Schizoaffective Disorder) I am also neurodiverse, which means I have differences in the way I experience, interact with and interpret the world around me. Psychosis has become my autistic special interest.

We need to treat sufferers with respect and encourage people to become experts in their own mental illnesses and neurodiverse conditions. Neurodiverse conditions are highly relevant to mental health because neurodiverse people are often more susceptible to mental health issues.

Understanding your mental health condition can help make the unknown seem more manageable, it can be easier to fight a monster when it has a name and traits you can work to battle. Rather than the general course I took, it feels essential that we develop courses aimed at sufferers in particular, that cover what they will need to know for their meetings with mental health teams to help enhance their treatment. These courses should be easy-to-understand and relatable, perhaps with video interviews with other patients, rather than just clinical descriptions of conditions.

When it comes to conditions such as psychosis, there’s a whole world to immerse yourself in when you get diagnosed. From picking up the lingo, such as antipsychotic side-effects akathisia (a movement disorder that makes it hard for you to stay still) and tardive dyskinesia (what a mouthful!) which involves involuntary movements of the face and jaw.

I think it’s important to give sufferers the language to help them explain their symptoms as well as a general knowledge of mental health so they can help identity traits from different co-occurring conditions which can be more common with certain mental health issues. There are statistics people might find it helpful to know too, outcomes for their condition and factors, such as substance abuse that make relapse more likely. I believe we need to arm sufferers with the knowledge to help them survive a lifetime alongside their illness.

It’s crucial for us to respect people’s autonomy when it comes to their illness and make them their own best advocate. This is not possible for everyone, and I know that during crisis this would not be possible as many people lack insight or are too unwell to learn about their illness. I also know that some people do not respond well to treatment and deteriorate over time, and are too unwell to be their own advocate, but for the people who retain their independence and are stable, we should trust and empower them to become their own best cheerleader.

Sometimes to get the best treatment, you and your friends and family have to prioritise your own care. These courses could also be useful for curious friends and family members who want to do their best to support sufferers with their illness.

I believe we need to create courses for mental health issues and symptoms, from Major Depressive Disorder (MDD) to psychosis, which are aimed at educating suffers in their own illnesses and symptoms.

A course like this would need to be developed with lived experience at its heart - a panel of people with mental illnesses who are at different stages of living with their illness and different levels of severity giving advice for what they wish they had known before they got ill.

These types of courses might even have positive effects, such as reduced hospital admissions because people would be educated about their illness and could help prevent relapse triggers and discuss medication compliance. They can also help people carve out additional meaning from their recovery journeys as they would have an active role within their own care.