Learning from Those with ‘Lived Experience’

March 10 – “I want a friend who will listen to what I’ve been through. That’s usually all I need. Yes, I’m having suicidal thoughts but that’s not the main point. If they freak out, I’m going to shut down and not want to talk about it. If they called the police, that would make the situation so much worse.”
– Member of Team NowMattersNow.org

This is a quote of someone with “Lived Experience,” a term that describes someone willing to share insights about having had suicidal experiences.

AFSP staff, volunteers, and supporters, maybe more than anything, want to prevent suicide. We have lost our mothers, brothers, lovers, and friends. But for those in the midst of intense emotional suffering, a focus on prevention itself — if it’s at the expense of pure, active listening, caring, and understanding in the moment — can shut down a rich and healing conversation.

This is the kind of vital perspective we gain with Lived Experience leadership. These experts are impacting research, health systems, crisis resources, and the language we use to talk about suicidal experiences. Among other work, Lived Experience experts have successfully testified for bills requiring training for health care providers working with suicidal people; provided advice in the formulation of AFSP’s Project 2025; and helped guide the development of Zero Suicide (an approach in health systems that prevents suicidal people from falling through the cracks). In speaking openly about their experiences, they are changing how we help people who are having suicidal thoughts. They are changing the public perception of those with suicidal experiences.

“My therapist didn’t ask me about suicide, even when I was saying I didn’t want to go on. Because he didn’t ask, I didn’t think I should talk about suicide. When I was hospitalized after my suicide attempt, my psychiatrist did not look me in the eye or even raise his eyes from his chart. I didn’t know there was a way I could get better.”
— Diana Cortez, Team NowMattersNow.org member and Zero Suicide Faculty

In my work as a psychologist and researcher, I began meeting people in the hours and days after suicide attempts. They often felt hopeless, alienated, and ashamed. Though they had had the psychological equivalent of a heart attack, many found it impossible to get specialized care, and sometimes any care. For the most part, they did not know there were powerful types of clinical interventions (such as Dialectical Behavior Therapy and Collaborative Assessment and Management of Suicidality), and if they did, they found that access to these treatments was nearly impossible due to the lack of providers, the cost and long waiting lists. Many described feeling they weren’t listened to or understood and this, in itself, was driving their suicidal thoughts.

It’s when I’ve taken the time to sit down with someone who has experienced it firsthand that I’ve really understood the suffering of someone considering suicide. One woman, after a telephone assessment, was feeling so alone that she asked me to put the phone next to my keyboard so she could hear me type rather than hang up. This is the excruciating experience of someone in intense emotional suffering. I recall Marsha Linehan, developer of Dialectical Behavior Therapy, describing the experience of our suicidal clients as the worst pain there is — that there might be nothing more painful.

Though I was gaining understanding, I still had the sense that suicidal people were different than me. But that changed. I learned instead that with enough stress and the right biological loading, your brain can respond in ways you have not ever anticipated. At one point in my career I worked in a place where I didn’t fit in, and where suicide research was new and still very unknown to the organization. I was doing the most difficult work of my life and felt misunderstood and socially isolated — feared and judged. When someone is suffering, like I was, they aren’t themselves. As my friend Shelby Rowe says, “No one suffers pretty.”

It was during this time that I could see how someone would want to die. I had the years of training of how to manage suicidal thoughts and the best treatment providers available — I was safe. But I now understood on a whole new level. It no longer was me and them, it was we. This wasn’t the organization’s fault — the staff didn’t have the training to talk about or understand suicide, and they were afraid. This is often the same for our family members and friends. Fear and judgment make a difficult situation far more painful than it would have been otherwise.

“I didn’t feel like I could say I was suicidal. I didn’t know what would happen if I did. I thought I might be thrown in a mental institution.”
AFSP research participant who had attempted suicide shortly after seeing her mental health provider

People who have attempted suicide say that they felt like they did something wrong, something shameful — and that they don’t know what would happen if they opened up about their thoughts of suicide. Without the education provided by those with Lived Experience, fear and judgment about suicide are a significant barrier to progress. By listening to the experiences of those with Lived Experience, people can learn how to talk openly and listen when a friend or loved one is having suicidal thoughts. Health systems and health care providers can directly assess and care compassionately for those with suicidal experiences.

AFSP supports and funds research that is inclusive of Lived Experience, ranging from incorporating the suggestions of research participants (those being traditionally “studied”), to those leading research projects, like myself. In 2013, AFSP funded a research project of mine. This project led to the development of NowMattersNow.org. This website is a public resource based on the experiences of those with Lived Experience using coping strategies from Dialectical Behavior Therapy, the therapy with the most research support for treatment of people who are suicidal. Our team is made up of those with Lived Experience who were paid as consultants on this project, in the same way that any other professional consultant would be paid. We worked together on the research design, and created the videos that include people sharing their experiences using DBT skills. In 2016 AFSP funded a project that includes interviews with those that recently had a suicide attempt, but had not had suicidal thoughts the last time they were asked at a primary care or mental health appointment. In order to make people feel more understood on this project and willing to be open, our research team and the interviewer are those with lived experience who include this information as part of the recruitment materials.

For a long time, people with Lived Experience were considered too ill or disturbed to provide insight. Sometimes the way they were treated with kid gloves left them feeling weaker rather than stronger. Often, they were not included in conversations about their health. But Lived Experience experts have created a groundswell leading to massive change in the way families and friends understand and react to their experience, as well as to the support that health providers offer to those with suicidal experiences. This is the kind of change I hope to see continue.

It’s important to realize that people can experience a range of suicidal thoughts, from those that pop into their heads and are not especially painful, to those that result in suicide death. The vast majority of people who have suicidal thoughts do not go on to attempt or die by suicide. For more information about the research behind NowMattersNow.org, watch the talk from the 2015 AFSP Chapter Leadership Conference. You can download and print free NowMattersNow.org cards for sharing at AFSP walks, in emergency rooms and inpatient psychiatric units. Write a caring message on the back for even more benefit to those suffering.

* The author would like to thank Rianna Hidalgo for support and feedback on several versions of this post.


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