The Power of Lived Experience in Suicide Prevention

Suicide touches millions of people in the U.S. each year.

According to the Centers for Disease Control and Prevention’s most recent estimates, more than 49,400 people died by suicide in 2022, an increase of about 5% from the previous year and about 30% from 2000. Further, data from 2021 shows that over 12 million adults reported having serious thoughts about suicide, and 1.7 million made a suicide attempt.

Although it affects such a large portion of the population, suicide is highly stigmatized, which is harmful both to people who are experiencing suicide risk, and to prevention and treatment efforts.

DeQuincy Meiffren-Lézine

DeQuincy Meiffren-Lézine, Ph.D., director of the Lived Experience Academy and an internationally recognized suicide prevention scholar, is a suicide attempt survivor who has worked in the field of suicide prevention since 1996. Dr. Meiffren-Lézine was the inaugural chair of the Attempt Survivor/ Lived Experience Division at the American Association of Suicidology and was a co-chair of the Consumer-Survivor Subcommittee for the 988 Suicide and Crisis Lifeline. He was awarded the federal Substance Abuse and Mental Health Services Administration’s Lifetime Achievement Award in 2015.

This interview with him has been edited for clarity and length.

Q: Today, Americans have a better understanding of mental health than ever before. But some stigma remains around suicide. Why do you think that is?

A: There’s a difference between knowledge and understanding versus attitudes. We’ve made progress in terms of how much people know about suicide and mental health conditions, but not much has necessarily changed around attitudes.

That’s at the crux of what happens with stigma. Stigma includes negative stereotypes, prejudice, and discrimination. Our increased knowledge is helping to diminish negative stereotypes about people with mental health conditions, but there’s still a lot of discrimination around suicide and mental health.

Q: What’s an example of that discrimination?

A: When a person applies for life insurance, and to some degree health insurance, a red flag is raised if there’s any record of them having a suicide attempt—like I do—or a hospitalization based on suicidal ideation, or thoughts about suicide. Life insurance may get denied or health insurance premiums could be higher. And in the workforce, professional licenses can be at risk if an individual has any history of mental health disorders or suicide attempts.

Q: Is stigma around suicide different from stigma that might come from other mental health conditions?

A: Suicide stigma differs from mental health stigma. We’ve seen some shifts around mental health stigma over the years: More people are willing to talk about mental health, and more people are willing to seek care. But suicide is catastrophic, and nobody wants it to be the cause of death for anyone in their family or social circles.

Q: How does stigma around suicide affect care for people experiencing suicidal ideation?

A: Stigma interferes with seeking help as well as providing help. Even when we’re making progress tackling stigma, it takes time for improvements to trickle down to behavior changes for individuals seeking help and even longer for practice changes to be adopted, implemented, and converted into policy by providers, including clinicians and health care institutions.

Stigma also impacts policymakers, who can prioritize things like adequate funding and growing the workforce for research and clinical care. Research is underfunded, and crisis care, mental health, and substance use treatment services tend to be understaffed. The result is not enough providers and less diversity of providers and services.

Finally, these effects of stigma can discourage the advocacy community working to improve care, leading advocates to burn out or leave the field when progress seems to take a long time.

Q: You say that suicide prevention is underfunded. Can you expand on that?

A: Funding for suicide research is paltry compared with funding for other mental health conditions. Consequently, we have fewer studies on what approaches to suicide prevention are effective. This means clinics and programs may not have the knowledge or the necessary tools to provide the most effective care. While there are some programs that have proved effective, they have high resource requirements, and many health care settings have finite resources.

Insurance reimbursement for mental health-related services is often inadequate, which also deters health care settings and their providers from investing in suicide prevention efforts and treatments.

Q: Are there ways to work around this lack of funding?

A: Yes. For example, some states have successfully used Medicaid funding to pay certified peer specialists—people with lived experience who help patients navigate the health care system and other aspects of their recovery.

Q: What else do peer specialists do?

A: When they’re part of a mobile crisis team responding to an emergency situation, for example, peer specialists can be directly involved in preventing suicide. They have an almost instant rapport with the person struggling, so it relaxes the situation and lowers the likelihood that law enforcement will need to be involved. The person in need can more easily transition from a crisis state to seeking help and getting care, because they’ve had an interaction with someone with a lived experience.

Q: Let’s talk more about that. What role does lived experience play in preventing suicide?

A: The most effective way to combat stigma is having personal interactions with someone who breaks the stereotype. When we meet a person who has recovered from suicidal ideation or from a suicide attempt and is doing well, it cracks the notion that someone who experienced ideation or an attempt can never get past it. The more individuals who step out and willingly associate themselves with the stigmatized group—the more people who are willing to say, “I have experienced suicidality in the past”—the more we break the stigma.

Q: How about outside the clinical sphere? What role can lived experiences play there?

A: A lot of national-level policies and big funding efforts have happened because legislators, or people close to legislators, shared that they or their family have lived experience with suicide.

Much of my work has been to bridge the gap between researchers and survivors of suicide attempts. Since I have experience in both communities, I have a camaraderie among Ph.D.s doing peer reviews and academic presentations as well as with folks who have made a suicidal attempt or lost somebody to suicide. By serving as a bridge, I’ve helped connect circles that otherwise were closed off to each other—and changed minds around what’s possible. People like me can show a different perspective of lived experience: that clinicians and researchers—or anyone, really—can have lived experience with suicide without it disqualifying them from being an effective professional.

Q: What new policies or practices would you like to see implemented to help prevent suicide?

A: In addition to proper funding for nonclinical and nonpharmaceutical interventions—and health insurance reimbursement for services provided by peer support groups, peer specialists, and specific suicide care practices—clinical institutions need to update their practices to be more evidence-based. We have some programs that were evidence-based in the 1980s or 1990s but haven’t changed with new research.

It would help if there were an agreed-upon definition of what it means to be an evidence-based program in the year 2023. It would also help if programs were to take into account population-specific needs so we know the best practices and programs for certain groups.

Q: When you say “the best practices and programs for certain groups,” what do you mean?

A: Sometimes we find out later that an intervention was effective only for a certain group. Maybe it was great for men, but it doesn’t work as well for women. Or it was great on the East Coast, but not the West. If programs aren’t up to date on these differences, they might be actually doing harm.

Q: What are some of the biggest misconceptions you've run into in your work?

A: One of the biggest is that organizations are relevant to suicide prevention only if they specifically work on suicide. It turns out that organizations working on issues that impact suicide risk, including child abuse prevention and environmental justice, are just as relevant to suicide prevention as groups that focus specifically on suicide. Our groups are not that different, and I think the tendency to separate out into small specialty groups has really harmed us—particularly when organizations end up competing for funding. When we collaborate, we get accelerated movement, improvement, and advancement in the field.