We need to listen to the experiences of people with psychosis
Jessica Oakwood talks about Reality Tourists, the new podcast about psychotic experiences she co-created with podcast host Hazel Cornhill, and how it helps give people with psychosis a voice.
When I first went through psychosis, it was the stories of others going through similar experiences that supported me to understand and relate to my psychotic symptoms and helped give me hope. I’ve had several psychotic breaks in the last few years, including being sectioned twice at crisis, and I live with lingering symptoms of psychosis. I’m on antipsychotics and I’ll probably have to take them for the rest of my life.
For those who don’t know, psychosis is a serious mental health issue where you experience symptoms such as delusions, hallucinations and/or disorganised thoughts and speech. Around 80% of people who experience psychosis go on to have more than one episode, and it is often something which you must learn to live with rather than recover from. Some studies estimate as few as 7% of people with psychosis are in employment, as many as 10% of people with psychosis die by suicide, and some estimates suggest people with psychosis die 10-15 years earlier than the general population.
Psychosis is treatable for the majority of sufferers with antipsychotic medication, but these often come with debilitating side-effects, such as weight gain, fatigue, nausea and in some cases, akathisia, which is a movement disorder characterised by the constant desire to pace or move, and tardive dyskinesia which involves involuntary movements of the face and jaw.
To help give others the stories they’re looking for about people’s experiences of psychosis, I’ve paired up with another mental health campaigner and psychosis sufferer to set up a podcast and blog about psychotic experiences called Reality Tourists.
Reality Tourists is a podcast about the mental health symptom psychosis. A symptom of various conditions and most commonly associated with schizoaffective disorder and schizophrenia, psychosis is often hidden out of sight in the mental health conversation. Reality Tourists aims to throw it into the limelight and get people talking about one of the most stigmatised mental health experiences. Reality Tourists is THE psychosis podcast run by people with psychosis for the psychosis community.
I’m working with Hazel Cornhill to produce Reality Tourists. I’m focused on helping people tell their written stories on the site and promoting the podcast while Hazel is the voice of the podcast and does all the magical editing work.
Hazel is a mental health campaigner focusing on eating disorders and psychosis. Hazel has had a varied career, and started training to be a doctor and then later, a teacher and then worked as everything from photographer to a joiner. As well as tweeting about mental health, you can find Hazel on Instagram posting about running. Hazel has experienced psychotic symptoms for around 15 years and also happens to be autistic.
Hazel says: ”We set up Reality Tourists because we wanted to hear other people’s experiences of psychosis. Psychosis can be a very isolating experience, especially if you don’t qualify for Early Intervention for Psychosis services. We want to help others realise that they’re not alone and get people to talk about psychosis more, as it’s often left in the shadows the mental health conversation.”
Reality Tourists is our way of talking about psychosis and helping people tell these, often very marginalised stories. We called it Reality Tourists because that’s what it can feel like sometimes, like you’re jumping between realities. I consider people who suffer from psychosis as having “psychosis spectrum conditions” – each person’s experience of psychosis is unique to them.
Psychosis is often tiptoed around, but we want to explore more everyday examples of psychosis where people live quiet lives with serious mental illness. We also want to talk about conditions you don’t typically associate with psychosis that have psychotic symptoms, as well as marginalised experiences such as homelessness, drug misuse and the rare cases where violence and psychosis overlap. The media tend to dramatise these experiences, but we want to get across authentic stories that people with psychotic illnesses and their loved ones can relate to to help them feel less alone.
Listen to Reality Tourists on platforms such as Spotify, Google Podcast, Apple Podcasts and Amazon or visit www.realitytourists.wordpress.com
Read some of Hazel’s blogs she’s written for SANE – HazelCornhill