Spreading Hope Through Peer Support

By Michael Haines | Aug. 01, 2018

 

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.



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Comments
Lolita Wilson
Thank you
8/9/2018 2:00:33 PM

Lolita Wilson
My son was diagnosed with psychosis, we live in Philadelphia,
can you please email me about support groups.
8/9/2018 1:59:53 PM

Harry C
For those of you who have asked for help or want to know how to locate a local group you can call this number: 800-950-NAMI
8/6/2018 7:53:35 PM

Kathy B. Murphy
I am looking for a peer support specialist for my 20 year old son with recent psych diagnosis.
Houston, Texas
8/1/2018 8:25:45 PM

Justine Graham
I have bipolar disorder. My therapist suggested to me for employment to work for Warm Line in Pennsylvania. Warm Line is a call center run by people with mental health issues for people with mental health issues. Anyone can call if they just need to talk to someone. There is a training session I would attend. I am very much considering this, as I genuinely want to help and support people. It's good for me and the people who call. The Warm Line call is free and confidential.
7/10/2018 12:34:25 AM

Debbie J
Since I relocated to Charlotte 2 1/2 years ago, I've been trying to find Peer Support Specialist (PSS) training since I arrived here. Most of the trainings are a little costly for me, as I'm on a fixed, disability income. I've been in substance abuse recovery 14 years. I've had my share of experiences with mental health facilities, and I know that I'm "called" to do this work. If I could only find a week of PSS training I can afford, I would be eternally grateful.
In the meantime, I'm chipping away at my bachelors degree in psychology.
7/8/2017 10:44:16 PM

Maxine Billips
Really need help please
6/1/2017 12:09:21 AM

Michael Lewallen
Roxanne
I am not sure of your location, but here in Portland and in many other cities there are "Clubhouse" programs. Ours is called NorthStar Clubhouse. Have your health care provider refer you, it has no cost and is a welcoming place for you to gather yourself and Thrive. Peer support specialist are available to assist when you are ready to engage.
5/4/2017 1:22:06 PM

Roxanne Vik
I want to connect with other people living with mental illness - live and in person - where can I do this? It was available in the hospital, but I need it out in the real world.
4/29/2017 9:23:29 PM

Adrienne
My 17 yr old niece attempted suicide two days ago . She was sent to hospital And is now at children's having psyche eval. This second attempt. My sister is struggling and feeling very alone. We live in Parker colorado. We need a support group relatively close to south Denver. Please help us.
4/22/2017 6:18:00 PM

Martha Ciganek
I'm interested in the peer support group. How do I find one in my area?
4/20/2017 8:21:23 AM

Emily
My son desperately needs peer support. He's recovering and his progress is halted by isolation!
Where can I hook him up for peer support within Los Angeles, CA?
Thanks
4/8/2017 12:04:32 PM

Patty
How do I find a peer support in my area? I am looking for someone who can talk to my son, we live in Fort Myers, Fl area Thanks
4/8/2017 11:32:34 AM

Linda Egan
I have been diagnosed with bipolar disorder. I am depressed and angry at the way psychiatrists casually prescribe medications that will (a) kill your thyroid forever, (b) force you to take OTHER drugs to combat hypothyroidism (synthroid has many side effects, including hair loss, weight gain, dry mouth and INSOMNIA), (c) and coordinating drugs such a Latuda (elevates blood sugar to pre-diabetic levels) and Lexapro (causes jaw clenching, cheek biting and extreme dry mouth). I have two principle concerns now that I am retired and have weeaned myself off of the bipolar meds: how to stay on an even keel and how to rid my body of substances with awful side effects. Help :)
4/7/2017 3:16:31 PM

Carolyn Tobias
I would like to join this blog post
4/5/2017 6:34:58 PM

Bradley d'Entremont
I am a Peer Support Specialist from Nova Scotia. The program is designed to help inpatients/outpatients from the hospital's mental health unit re-intergrate themselves back into the community. The peers are referred to you by the hospital and you meet them in a public place like MacDonald's to communicate with them. With your lived experience and training, I get people to open-up and talk about their problems.
4/3/2017 5:47:33 PM

Sage
What a great read! So inspiring
3/31/2017 9:57:28 PM

Jennifer Marty
I want to do this. Or something like it.
3/31/2017 4:39:04 PM

Jennifer Marty
I want to do this! Or something like it. How do I get started?
3/31/2017 4:37:47 PM