A lived experience perspective on narratives in mental health research

I didn’t realize I was ill until approximately one year after becoming schizoaffective. It was not until I was going to bed one night and the room split up into three time dimensions — one of the past, another of the present and one of the future — that I realized something was wrong. I then contacted a psychiatrist to make an appointment.

During my year of being sick without medication, I dropped out of medical school and hitchhiked across the USA to California and Tijuana where I slept on the streets and panhandled.

Credit: Michael Williams

For me, it has been 20 years of living with this condition. Along the way I have had several psychiatrists and counsellors, and I have been on different medications.

My diagnosis was made by a man with poor bedside manner, which is a problem with some psychiatrists. He lacked sympathy and in a cold and flat way told me what was wrong with me. He failed to explain anything to me and simply prescribed medication.

Finding a counsellor who knows how to treat my disease is incredibly difficult. Most counsellors resort to talk therapy to try and help me to cope with the illness. However, this approach fails to address symptoms such as auditory or visual hallucinations and delusions to a meaningful degree. I understand cognitive behavioural therapy for my condition is available in the UK, but not here in the USA. It is also very rare to meet a therapist with an ability to see inside the illness or who has much experience treating the disease. To most clinicians, intricacies of the mental experiences of the patients are beyond their understanding.

At first, I was simply interested in being part of something at Harvard Medical School because it seemed exciting, and I had an interest in becoming a clinical psychologist. However, I soon realized I was being more or less placated and left the consumer advisory board I was on.

After this experience, I realized I had something to contribute, and I began publishing letters to the editor in psychiatric journals. In these pieces, I addressed topics such as the need to make significant changes to psychiatric units so they are less like jails and also the need to change the term ‘psychosis’ owing to its affiliation with the term ‘psychopath’. I addressed other issues as well, such as psychiatrists using antipsychotics that cause significant weight gain before trying others. I see these letters as a way to make a meaningful impact without having to go to school for a degree in psychology.

There seems to be a trend to include people with lived experience in research but, in my experience, patients are not compensated enough financially for their contributions. Increasing financial incentives would help to increase participation. Furthermore, recognizing patients as co-authors on the research projects they are involved in might encourage lived experience experts to become involved and engaged with research.

Many patients are unfortunately wasting their time. For the most part, they come to the research meetings without the academic experience or knowledge they would need to design studies. However, they are often treated as if they had this expertise. I recall one patient who had schizophrenia and could not really speak much. He was an example of tokenism.

Ultimately, in research and academic scenarios, patients can be used to obtain grants instead of being treated as real contributors. It would help if university ethical boards paid more attention to how patients are included in these research endeavours.

“It would help if university ethical boards paid more attention to how patients are included in these research endeavours.”

Pay attention to how you and other patients involved in the research project are being treated: Are you really contributing or are researchers keeping you around for reasons you do not understand? If you are not really making a difference, it is alright to leave the research group rather than be mistreated.