Spreading Hope Through Peer Support

What does it mean to be a peer support specialist?

To me, it means providing a voice for people when they struggle in finding their own. It means advocating for people, encouraging their recoveries and even sometimes standing in courtrooms as a show of support. And it often means educating community members and outside providers about First Episode Psychosis (FEP) programs like the Early Assessment and Support Alliance (EASA)—a program where I transformed from a participant to a peer support specialist.

For many, psychosis is a scary experience, and it can be easy to lose hope. When I received my diagnosis, I felt like all hope was lost. I thought my life was over. I thought I was doomed to serve a life sentence, confined to the four walls that enclosed my bedroom in my mother’s basement. That’s a tough pill to swallow at 20 years old. Due to my fear and paranoia, I often found it difficult to leave not only my house, but even my room. I felt completely alone, hurtling in a downward spiral of despair.

This is typical for a person whose experiencing psychosis—to withdraw from those around them. For that reason, psychosis breeds isolation and loneliness. But what made a huge impact for me during this period of isolation was being able to talk with others who understood what I was experiencing. What I needed at that time is exactly what I work to provide for people now: messages of hope. At its core, I view peer support as the strategic use of telling one’s own lived experience as a tool to work with others through their experience.

What Does a Peer Support Specialist Do?

As a peer support specialist, I can meet people where they are comfortable. If they decide they don’t want to meet in the office, I can travel to them. I’ve met people all throughout my community. Often, we even interact via text message to coordinate meetings or just be in contact. Everyone engages in their own way, and I work hard to build rapport and trust with participants and their families.

As a peer support specialist, I work with program participants to help reduce their social isolation. We may look at a participant’s hobbies and interests and use those passions to help reconnect them to their community. The social support that can be gained through hobbies is an important coping strategy for those experiencing psychosis. I work with participants to create organic social supports, so when they move on from our program they have a natural support system in place.

As a peer support specialist, I act as a model for recovery. In the past year, I met a psychiatrist who didn’t even know recovery from psychosis was possible. After sharing my journey with him and combating the idea that a diagnosis is the end-all for patients, it’s my hope that he has changed his message to the patients he works with, potentially creating a dramatic difference in their recovery process.

As a peer support specialist, I work to help people to see diagnoses for what they are: words. A diagnosis is not a definition. See, a word by itself doesn’t have power—it’s merely a series of letters mashed together. The negative connotations associated with the words “psychosis” and “schizophrenia” are learned, taught to us through sources such as the media. And it’s all too easy to take what the media tells us about these diagnoses and use that information to form beliefs about yourself—but a diagnosis says nothing more about you than the color of your hair. What defines each person is theirs to create and own.

As a peer support specialist, I work with people who need me to hold onto their hope for them until they’re ready to hold it for themselves, just as I once needed.

Note: An earlier version of this blog appeared on NAMI.org in March 2017.