I tried to kill myself when I was 14. It wasn’t the first time. My psychiatrist had just upped my Prozac, a whole lot of unresolved early childhood trauma had flared up at puberty, and the baseline sadness and confusion I felt mushroomed into an overwhelming desire to die. The thoughts wouldn’t leave me alone: Everything I could think of circled back only to suicide. I wrote out a suicide note and made an attempt.
I won’t go into the horrors of waking up alive in an emergency room where the staff was clearly annoyed they had to deal with me and my “attention seeking” behavior. (I have written about this elsewhere.) I won’t go into the indignity of being involuntarily locked up, time after time, until I satisfactorily convinced the staff that I wouldn’t harm myself or attempt suicide again. (I was lying.) The system taught me to lie, to hide my suicidal feelings in order to escape yet another round of dehumanizing lock-ups and “treatments.” Rarely did I feel seen or heard in the various settings I was committed to over the years. Generally, I felt more like an object to be diagnosed, dosed, and kept alive against my will.
My champions generally came from outside the mental health system. Mr. Harris (no relation), my high school Honors Comp teacher, came to visit me in the psych ward after an attempt. I was embarrassed to let him see me like that, but I was also secretly happy he showed up. He didn’t see me through the lens of diagnosis or deficit or as a “suicidal patient.” He saw me as a gifted writer, and encouraged me to keep writing. Mr. Harris literally shined the very first light that helped me to journey out of suicide and back to life. (Believe that you, one human being, can make that much of a difference in someone’s life. He did, with no special “training” or “expertise.”)
When I was 25 years old, I made the decision to be “out” as a person with a psychiatric history and past suicide attempts, and entered the world of mental health activism/advocacy. My first real job in the field was in 2008 with a small suicide prevention non-profit. I was hired specifically for my lived experience; but everywhere I went, the only voices that seemed to matter were those of the MDs, the PhDs, or the “suicide survivors,” family members who had lost loved ones to suicide. While these voices are certainly important and we owe much to the grassroots suicide survivor movement for raising awareness about suicide, I wondered why there didn’t seem to be any interest in hearing the perspectives of people like me, who had survived suicide attempts.
I resigned from my suicide prevention gig after eight months, not because I believed people’s hearts were not in the right place but because I instinctively felt the prevailing approach was inadvertently making the problem worse. I also couldn’t continue to do grants stewardship for one of their funders, Eli Lilly, whose drugs had caused myself and others to be more suicidal.
I was troubled by the master narrative of suicide prevention, which is all about “promoting help-seeking behaviors,” ostensibly for some underlying, untreated mental health condition. Okay, so let’s say someone heeds the suicide prevention call and gets into treatment. What kind of help will they receive? Likely, a diagnosis, some pills that they may or may not be told they need to take for life, and a discharge. Furthermore, at least one study indicates that “the risk of suicide is higher during the period immediately following discharge from inpatient psychiatric care than at any other time in a service user’s life.” I would argue that this is not only due to lack of follow-up upon discharge, as the study asserts; it is also because most mental health care systems and providers don’t know much about promoting hope and well-being after a suicide attempt. Suicidology experts concede that the training most mental health professionals receive regarding suicide is “woefully inadequate.”
What I have noticed about suicide prevention is that despite all the brains, money, and good intentions being poured into it, it doesn’t seem to be working. I recently attended a research progress meeting at the National Institute of Mental Health, where NIMH director Dr. Thomas Insel shared some very disturbing trends. He showed a chart comparing mortality from stroke, heart disease, AIDS, and leukemia from 1990 to 2010. In every single case, there have been noticeable, impressive decreases in mortality over this time period. Most striking is that AIDS, which was once an almost-certain death sentence, is now seen as a “Chronic Manageable Disease.” The decrease in mortality stops when we come to rates of suicide, which remain largely unchanged over the very same time period. Why isn’t the suicide rate going down?
Here in the United States we spend more per capita but have overall poorer health outcomes compared to other similarly wealthy nations. As Robert Whitaker argued in Anatomy of an Epidemic, more and more people are being permanently disabled by mental health conditions – at an alarming rate. Mental health/substance use issues (especially depression, anxiety, and other conditions) are among the leading contributors to chronic disability in the United States, according to a 2013 JAMA study. Consider the Global Burden of Disease Study 2010, which is the largest study of its kind looking at mental health and substance use worldwide from 1990 to 2010. Since 1990, the “global burden of disease” attributable to mental health conditions and substance use, as measured by the number of Disability Adjusted Life Years (DALYs), rose 36 percent worldwide. The studies’ authors attribute this rising “global burden” to age and population growth. Now, I’m no public health expert, but these results do beg the question: Why aren’t people getting better when it comes to mental health-related conditions? Robert Whitaker has much to say about this, including the dominance of the medical model approach and the indiscriminate and often irresponsible over-prescribing of psychiatric drugs. Remember that people diagnosed with severe mental health issues die, on average, 25 years younger than the general population.
These statistics suggest something is fundamentally wrong when it comes to our national and global approach to suicide. What has been missing from the suicide prevention puzzle? The voices of people who have intimately known what it feels like to want to die. Even today, if you took a straw poll of suicidologists to see if there is value in our voices and perspectives, I believe that few would see it. Ironically, this perspective is at odds with the views of Dr. Edwin Shneidman, largely considered to be the founder of suicidology, who viewed the perspectives of people with lived experience of suicide as critically important. He wrote in The Suicidal Mind (1996): “the keys to understanding suicide are made of plain language…the ordinary everyday words that are found in the verbatim reports of beleaguered suicidal minds.” You would never know this to attend today’s suicidology meetings, which are much more concerned with studying statistics about people who have completed suicide, rather than talking to those of us who are still alive. David Webb, author of Thinking about Suicide, defines suicidology’s current prejudices against the first-person voice of survivors as “scientism,” or the belief that only the third-person, or scientific/medical, narrative is what matters. It is this very scientism that persons with lived experience of suicide must challenge head-on.
I myself was at first very reluctant to engage with a field that didn’t seem to value my perspective, as it caused me to re-experience traumatic memories of being silenced and suppressed by mental health professionals in the past. But the good news is that the dominance of scientism in the suicide prevention world is slowly eroding. For years, people like Eduardo Vega, Heidi Bryan, Mark Davis and DeQuincy Lezine have been lone voices trying to get the entire suicide prevention field to see the importance of the attempt survivor perspective. In large part due to their hard work, and allies and champions within the American Association of Suicidology, it looks like a new Suicide Attempt Survivor Division of AAS is on the verge of becoming a reality. My hope is that the voices of suicide attempt survivors will not only be taken seriously within AAS, but that their “lived expertise” will come to drive all research, policy, health care priorities and community responses to suicide.
In the last few years, there are a growing number of suicide attempt survivors who are willing to speak out and challenge the status quo. Live Through This, created by Dese’Rae Stage, features the images and stories of people who have attempted suicide. The American Association of Suicidology has launched a blog, run by journalist Cara Anna, which features over 60 distinct voices of people with lived experience of attempting suicide. I don’t agree with every perspective I read on that website, but it is exciting to me that so many people are now willing to publicly break down the taboos around being “out” as a person who has struggled with suicidal feelings and attempts. Like the HIV/AIDS movement in the 1980s and 1990s we are a highly stigmatized group; but I also believe that, like the HIV/AIDS movement, we have the power to change attitudes and demand change with our advocacy voices.
A heartening development for me was a recent historic summit sponsored by the National Action Alliance for Suicide Prevention, which sought to bring together its Suicide Attempt Survivors Task Force, as well as members from its Clinical Care and Intervention Task Force, launching a new Zero Suicide initiative. (Click here and here for some reports on the event, from an attempt survivor and clinician perspective, respectively.) For the first time, I was able to sit in a room with clinicians and feel that my voice was not only heard but valued and respected. I was able to say things that I didn’t feel safe saying if I wanted to keep my suicide prevention job in 1998. I was able to say that “safety” in the context of my treatment was always a euphemism for coercion, and that well-intentioned efforts to keep me “safe” caused only more harm and trauma. Cara Anna said that “treatment should never feel like punishment” and I emphasized that “forced treatment has no place when it comes to mental health or suicide.” Melodee Jarvis talked about “celebrating our stories of survival.” Tom Kelly said, “I’m a person. I’m not a lost cause.” These are sentiments and concerns that have heretofore not been uttered in mainstream suicide prevention meetings. We have a long way to go to see a grassroots movement of suicide attempt survivors that will be able to influence the way suicide is understood and responded to on a national and global scale, but this dialogue was an encouraging beginning.
What Can You Do?
Tell Your Story. If you are a suicide attempt survivor, or someone who lives with suicidal feelings, I encourage you to “come out–” if and only if you feel ready. Find someone you can trust; write a blog post; create a video; send a selfie to #todayistandup on Instagram; do whatever you can to break down the scary walls of silence and shame around this issue. Share what system and social responses hurt you and added to your suicidal burden; tell us what gives you hope; and explain how you cope and stay alive in an often-hostile world. Tell us about the relationships that helped bring you back to life. We need your wisdom and your vision. The more of us who speak out, the more power we will have to end discrimination and effect the radical changes we want to see in how suicidal people are treated. Our voices are needed everywhere to shift the perspective from a narrow medical model, deficit-based approach, to a holistic, strengths-based, community-wide suicide response.
Join [email protected], the international Suicide Attempt Survivor discussion list. I started this list several months ago to promote respectful dialogue among suicide attempt survivors, to get politically organized, and to share resources and information. Lots of great ideas are being generated there, such as the need for an independent advocacy network of people with lived experience of suicide (which is coming soon!) as well the need for a national survivor-run 24/7 chat/text service to support people experiencing thoughts of suicide. We need your energy and support to bring these and other hopeful ideas to fruition.
Join the #SPSM (suicide prevention social media) chats on Twitter. I have participated in a few of these, and it’s a great way to influence the conversations and bring a lived experience perspective. People on Twitter constantly bemoan the lack of survivor and advocate voices in these conversations, so please get on Twitter for some respectful dialogue and to share your ideas. Find me tweeting about suicide and well-being @leahida, and follow @beyondmeds, @aboutsuicide, @unsuicide, and @lttphoto for a start.
Learn how to be an ally/practice Emotional CPR. I recently had the pleasure of co-presenting (with Will Hall) a workshop on a public education campaign we are developing called “Emotional CPR for People with Suicidal Feelings” at the Tools for Change conference in San Francisco (#tfc2014). In the workshop, we talked about why current, fear-based responses to suicide only drive the problem, and how we can all practice responding from a place of hope and belief that healing is possible. People told us that they appreciated eCPR’s use of role plays, which we used to contrast the typical fear-and-liability-based response with examples of open-hearted, curious responses that honor the person’s profound pain with respect and dignity. To be an ally to someone who is suicidal means that we practice listening without judgment; that we validate the person’s experience; and that we work collaboratively, not coercively, to help the person find the right supports they need to cope with their suicidal thoughts, feelings, and actions.
Make a commitment to be a part of the solution. For too long, we have been told that community members must leave it up to the professionals to deal with suicide. As a result, we as a society are “illiterate” when it comes to suicide. Not only do we not know the signs, we generally have no idea how to respond in a way that’s actually helpful. But we can and should each be prepared to play an important role in supporting someone through a suicidal crisis. If we truly want to make change, we can’t leave it solely up to the police or the clinicians (who, as we saw earlier, mostly do not have training on how to respond to suicide). We must learn to honor the suicidal experience as a deeply human problem, a universal problem, a “crisis of the self,” as David Webb so eloquently puts it, and to do much better than a severely limited medical model that locates suicide in faulty biology or genes. Understanding suicide as a medical issue/biological disorder only breeds the current state of fear, misunderstanding and discrimination. Understanding suicide as a human struggle is naturally de-stigmatizing and generates authentic compassion.
Create Safe Community Spaces. For too long we have been told that we cannot speak openly about suicide, that we will somehow spread it via “contagion.” That advice demonstrates complete ignorance. We must create truly safe spaces everywhere, where people can speak honestly about suicide without fear of coercive interventions. We can all be a Mr. Harris and go beyond the approach of simply preventing someone from dying by any means possible (even if it kills them), and instead practice supporting them, in a spirit of respect and collaboration, to find reasons to live. Forget just “preventing” suicide. Together, let’s create real community alternatives!
I believe that by returning to the humanistic roots of suicidology, elevating the first-person experience to its former centrality, and creating safe, culturally respectful spaces to unload our suicidal burdens, we just may have a chance of reversing our global epidemic of suicide and distress.
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