Dear Mental Health Professionals – You Need People With Lived Experience On Your Team. Here’s Why.

Dear researchers, clinicians, and other professionals who work with people who experience psychosis,

My name is Katie and I have been living with schizoaffective disorder since 2008. And you need people like me. I don’t mean as patients or research subjects or consumers of any kind. I mean as a fellow professional. Because my lived experience, and that of others, can change the way we look at and treat those living with psychosis.

I can give you insights you can’t find anywhere but the minds of those living with psychosis.

I’ve been a psychosis advocate for years. I’ve worked independently, as an ambassador for NAMI Chicago, and, most recently, as an advocate with Students with Psychosis. Up until the last few months, I never felt like clinicians and researchers saw myself and other psychosis advocates as equals in some sense. There have been some who treated me as a peer in terms of what I have to offer not just those living with psychosis and their loved ones, but also to clinicians and researchers. But in many instances, I felt like I was seen by professionals as a novelty. I was someone who just told inspiring stories, not as someone whose insights could be invaluable.

It’s a different, and very important perspective.

I can tell you what my hallucinations feel like. I can tell you the thoughts that tumble through my mind in that very moment. You can step behind the curtain and learn what it feels like to experience my symptoms. I can help you understand what your patients and participants are experiencing.

It’s true, everyone’s experiences with psychosis are different.

The fact that everyone’s experiences are different just proves the importance of including those with lived experience into the professional world. A textbook or manual cannot cover the vast spectrum of experiences that people have with psychosis. But we can. We can fill in those gaps. We can set straight the words of speculation that I often find in academic papers and articles written by professionals.

I have a great deal of respect for the years of schooling and work and patient interactions that researchers and clinicians and other professionals have. But those of us who live with psychosis are immersed in this world at all times. I have a degree in psychology from a school with a fancy name and three years of being a research assistant studying schizophrenia on my resume, but nothing has taught me as much about it as living with it. And though many advocates have never delved into a psychopathology textbook themselves, their experiences may have taught them much more than that book ever could.

Working side by side with people with lived experience can benefit consumers as well.

No one can connect with someone struggling with psychosis and recovery more than someone who has been in that position themselves. We can offer these individuals a level of support and understanding that others never could. They may be more likely to trust and confide in someone who they feel can relate to what they are grappling with. This, in turn, could lead to more information being conveyed to the clinician, potentially improving the quality and success of treatment.

Incorporating those with lived experience as professionals in treatment centers may increase engagement and reduce drop out rates.

When I entered college a year after my diagnosis, I desperately wanted to find even just a story of someone who successfully completed their degree at my university while living with a schizophrenia spectrum disorder. I found no one. I was terrified of asking for any form of help for fear of it impacting my career as a student. And I can only imagine how much more at ease I would have felt had I been able to talk to someone who had been there and done that. I would have loved to be able to talk to someone about what my life was like without having to translate it into something that others could more easily understand. If they could understand at all. My college experience could have been completely different. And including people with lived experience in a clinical setting has the potential to do the same thing.

No one knows people with psychosis the way other people with psychosis do.

Though I may not have the training of a clinician, I have the ability to interact with others with psychosis in a way that they can’t. I don’t have the years of schooling that a researcher does, but I can tell you a great deal more about the things you can’t measure than those years in classrooms and clinics could. My experiences may be unique, but so are the experiences of the people you serve. I didn’t pay for school, but I paid for treatment and mountains of medication. There are no letters after my name, but I have seen a side of psychosis that only those with lived experience ever will. And that matters.

Including voice of lived experience is vital.

Voices of lived experience are crucial to the work of professionals who interact with, treat, or study individuals with psychosis. We are not novelties. We are not a show. It’s time we are given the opportunity to step in as more than just story tellers. It’s time for us to be included in the professional world – for the value of our insights, experiences, and capabilities to be recognized. You learned from books and hands on experience. We learned by living with it.

Not all individuals with lived experience can or want to take part, and there’s nothing wrong with that. But it’s time for professionals and those with lived experience who choose to step in to merge their efforts. Together, we can approach the treatment of individuals with psychosis with knowledge and skills on all sides. The potential for improvement in treatment programs, the direction of research, and, most importantly, in the lives of individuals with psychosis and their loved ones, is undeniable.

If you’re still hesitant, listen to the clinicians and researchers who are already bringing people with lived experience into the professional world as discussed in the studies and articles listed below.

Sincerely,

Katie

Further Reading

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• Huckins, Grace. Want to Understand Delusions? Listen to the People Who Have Them. Wired. Conde Nast, 7 June 2022, https://www.wired.com/story/want-to-understand-delusions-listen-to-the-people-who-have-them/.

• Kohrt BA, Jordans MJD, Turner EL, et al. Collaboration With People With Lived Experience of Mental Illness to Reduce Stigma and Improve Primary Care Services: A Pilot Cluster Randomized Clinical Trial. JAMA Netw Open. 2021;4(11):e2131475. doi:10.1001/jamanetworkopen.2021.31475

• Vojtila, L., Ashfaq, I., Ampofo, A. et al. Engaging a person with lived experience of mental illness in a collaborative care model feasibility study. Res Involv Engagem 7, 5 (2021). https://doi.org/10.1186/s40900-020-00247-w

• Helen Thai, Noor Sharif, Kevin Patrick, Chelsea Meldrum, Tyrone Gamble, Carrie Robertson, Nicola Wright, Tomas Fogl, Amy Webb, Jessica Tutino, Nancy Bahl, Bronwyn O’Brien & the Par Co-Design Team (2021) A Participatory Action Research (PAR) exploratory initiative for psychosis recovery and resilience, Psychosis, 13:2, 143-153, https://doi.org/10.1080/17522439.2020.1853202

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