This essay includes quotes from You Are Not Alone: The NAMI Guide to Navigating Mental Health―With Advice from Experts and Wisdom From Real People and Families by Ken Duckworth MD (Zando, September 2022).
As part of her release from a psychiatric hospital after years of incarceration and hospitalization, Kimberly Comer was required to attend a presentation in which a leader with a lived experience speaks openly about what it’s like to have a mental health condition. It was that group that saved her life.
“I went because that was the only way I was going to get discharged,” she later told me. At the time, she was 48, and “I had no life. Nothing to go back to.” Rather than live in her car, she planned to use the prescription medication she would be provided with at discharge to kill herself. First, she just had to sit through the presentation. Instead, it inspired her to try something new. “The young lady that shared her story about recovery, she had a diagnosis very similar to mine. She was married, had a home, children. She was going to school for social work. She had a life, and for the first time in my life, I had hope.”
As we continue to face a mental health crisis, there is a severe shortage of licensed professionals to help, especially if you are not wealthy. Nearly 60 percent of U.S. counties do not have a single psychiatrist. And it takes a decade to make a psychiatrist—the ultimate supply chain shortage. There are other types of mental health care professionals, too, of course—psychologists, licensed clinical social workers, and others—but there still aren’t enough to help everyone who needs assistance, especially if they aren’t wealthy.
There are lots of ideas about how to overcome the shortage of mental health professionals. For instance, we might use the people we do have in more efficient ways. There are consultative models where, for example, an adolescent psychiatrist coaches a pediatrician to help more adolescents, yet these models are few and far between. Funding limitations and lack of training hinder this good idea. Technology can also be useful, but here, too, there are practical problems. Some digital strategies, like telehealth, are effective and convenient, but they don’t create a professional workforce or hours in the day. And privacy and data sharing are major concerns in a largely unregulated space.
But there’s one thing we can definitely do: broaden the idea of who has something to offer.
The presentation Comer attended was part of the National Association for Mental Illness’ In Our Voice series. As the chief medical officer of NAMI, I’m admittedly a little biased here, but it’s a program that has made a difference for many. It’s just one example of how peer support may be a vital bridge for those seeking care. Peers are often overlooked, despite the expertise they’ve acquired from their own mental health and addiction journeys. To be clear, peers can’t and don’t replace professionals, but they offer something that doctors like me rarely can: the true experience of walking the path you have been through. Peers may be a helpful resource to consider when you are waiting for weeks or months at a time for a licensed professional.
Peer work can be informal—a coming together of like minds and experiences to help one another. This is the format of many of NAMI’s support groups: people helping each other by sharing lessons and experience. Peer support can also be formal via professional peer specialists also called peer navigators. These are paid for by Medicaid or state grants in many places. They have a certification (which may differ by state) and a role on a treatment team. Tera Carter explains her experience as a professional peer support specialist:
I use my judgment as it relates to me sharing my experiences. Like, say we’re assessing someone, and they have a mood disorder, and they say, “I’m never going to be able to get better.” That’s when I step in and say, “Oh no, no. You can get better.” Then I tell them my experience, and they’re like, “Are you serious?” To which I say, “I’m very serious. I’ve been in crisis; I’ve lost just about everything and had to rebuild; I’ve had to find the right medications.” It really gives people hope. It gives them hope to be able to see that it is possible to do better. But I also make sure that I share that it requires work, it requires commitment, and it requires consistency.
Whether informal or formal, the key to peer support is using lived experience as a guide to help others and give hope to those who are struggling. NAMI’s Peer to Peer education course uses a scripted, structural approach. People with mental illness, typically, we have executive function problems, memory problems, staying on task/focus issues—not all the time, but at various times. So, a script overcomes all this if people are trained to use the script to teach others,” says Kathryn Cohan McNulty, who helped create the course. Kathryn came to the mental health field first as a provider. But her knowledge of the medical model and years of graduate-level fieldwork were also informed by personal experience of serious mental illness and involvement in peer activities.
In 2000, Kathryn was working to raise two young children while grappling with mental illness, and the dirty dishes were piling up. At the time, she faithfully attended a support group hosted by her husband for people experiencing similar issues and brought this concern to the group. Another member suggested to her, “Oh, you could use paper plates.” A simple suggestion, but one that changed Kathryn’s life and set her on a path to develop a new program for those living with mental illness.
To be clear: Peers cannot diagnose or treat mental health conditions. That is a clear bright line that is essential to keep in mind as you work to navigate your mental health journey.
Peers are also not a panacea. When looking for a peer organization, it is important to do some research to make sure there is a fit between you and what you are looking for. For example, in co-occurring conditions of substance use and mental health, there are peer choices with some key differences. SMART Recovery is a model that does not focus on a higher power, and one that routinely accepts that medication may be part of a path for some. The 12-step programs like AA and NA have a higher-power focus and may not be as accepting of medication used to treat substance abuse disorder or psychiatric problems, depending on the particular group’s composition.
If you are distressed and need someone to talk to, Warmlines may be a place to go to find a peer who will support you. Warmlines are resources staffed by peers that offer support but not crisis or suicide prevention counseling like you would find by calling 988 (a crisis hotline).
Peer supports were not part of my psychiatric training in the ’80s and ’90s. The dynamic was then either/or. Now it is much more likely to be both/and. This has evolved over time and now most traditional facilities welcome NAMI groups, addiction support groups, and other peer resources into their facilities, but more importantly, into their philosophy. Professionals have for the most part come to respect the additional perspective peers can offer. I was asked to speak to one peer group, the Depression and Bipolar Support Alliance, in the cafeteria of a top-rated psychiatric hospital. There were 200 people who came to the hospital to learn together, and from one another, which wouldn’t have happened in my training days.
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At that meeting of the DBSA, I was again impressed by the power of being joined by others with a mental health condition. After I was asked a question, I welcomed input from those in the audience, recognizing that they might have related knowledge and insights that I may not have. Many offered good ideas on how to rebuild relationships strained by illness episodes or ways to have someone help you monitor your own symptoms. I was again impressed at how open the conversation was for conditions that often promote isolation in our society and how useful that approach can be.
We clearly need more mental health and addiction professionals. Professionals bring training, empathy, and an understanding of the research literature that comes from a commitment to the craft of mental health. They are skilled in making diagnoses and applying treatment options from psychotherapy to medications and more that are tailored to the person seeking care. Yet creating more professionals is a very long-term problem to fix. While you are waiting for professional help, and even if you have it, consider assessing whether one of the many peer resources can be part of your recovery toolbox.
Ray Lay, a veteran who lives in Indiana, has used professional and peer work together to create his own recovery from addiction, psychosis and homelessness. He told me his peer work with veterans has given him a purpose to his life, “a medicine that I don’t have to take the top off.”
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