I lost my dad to suicide on Valentine’s Day

By Emily Alvarez

Stories of lived experience can be used to fight the stigma of mental illness and suicide and to help get people involved in the movement. These journeys humanize the suicide prevention movement and help other people seek help. This series on lived experience is a great chance to highlight a loss survivor’s story and the search for meaning after loss.

Jeff Leieritz recently became involved with the Carson J Spencer Foundation through his work with a construction trade association. His association, Associated Builders and Contractors, Inc. (ABC) recently joined the Construction Industry Alliance for Suicide Prevention. This move allowed him to come in contact with the Carson J Spencer Foundation. Jeff lost his father last year and has been trying to make meaning out of the loss ever since. This year, we want to focus on lived experience and share stories of finding meaning from loss and despair. This is his story:

I lost my dad to suicide on Valentine’s Day 2015. My dad was one of the most selfless people I’ve ever met; he was a teacher and middle school coach in San Bernardino, California and invested a lot of extra effort and time in his students and student athletes. 

Jeff and his Dad

My dad was my coach growing up and was the best man in my wedding. I not only lost my dad, I lost one of my best friends. My wife had never seen me cry before my dad took his own life, but I do not think I can count the number of times she has seen it since. 

He and my mother made a lot of sacrifices to raise me in a way that has allowed me to be successful. It’s impossible to get through a day without seeing ways that my parents have touched my life. My work ethic and faith in Christ are deeply rooted in the way I was raised by both of my parents. 

My dad was a father figure to so many people over the years, but never met my son, who shares his middle name with my dad. I never thought I would be in the position of raising my son without my dad around but I hope that I am able to instill in him the sense of compassion for other people that my dad lived every day. 

Speaking at my dad’s memorial service was one of the most difficult things I have ever done. I remember watching him speak at his dad’s funeral a couple of years before and do not know how he made it through speaking without breaking down. 

I didn’t make it past my first sentence without crying. 

My mourning process is ongoing, there’s not a day that goes by that I do not miss my dad. The biggest challenge that I believe I have overcome in my mourning process is asking myself the what if questions. 

What if I had recognized the signs? 

What if I had known what this meant? I live on the East Coast now, what if I had been around more? 

What if? What if? What if? 

There’s no solace in pondering those questions and no healing. I believe that everything happens for a reason. I do not know that I will ever understand why my dad took his own life but I am also not going to heal if I keep asking myself these unanswerable questions. 

Realizing that no good comes from these questions, whether I am asking them myself or feel like I need to answer them for others was a big moment in my mourning process. 

I have attempted to maintain my dad’s legacy as a coach and leader in the community by establishing a memorial scholarship for student athletes from the  Westside of San Bernardino who have excelled in the classroom and in athletics in his name. The first memorial scholarship was awarded a couple of months after he passed away. This past year we were able to raise enough money to award scholarships to two applicants. 

Additionally, my employer, Associated Builders and Contractors (ABC), a national construction industry trade association representing nearly 21,000 members, has joined the Construction Industry Alliance for Suicide Prevention. As a part of the alliance ABC is taking an active role in raising awareness and distributing resources to companies about suicide prevention and mental health promotion. 

I am proud of our involvement in the Construction Industry Alliance for Suicide Prevention and I find a purpose in trying to raise awareness and normalize conversations about mental health. I believe there is a crippling stigma that comes with discussing mental health issues and this stigma and hesitance only increases the feeling of isolation that people feel when they are battling suicidal thoughts. By normalizing conversations about mental health and suicide prevention, I believe that we can make people that are struggling feel less isolated. 

I lost my dad at the age of 28, he never met my son, was not around to see me buy my first house, he’s already missed so much; I need to feel like I am using my experience in losing him and his life in a way that will have a positive impact on the world. 

I think that my dad would be most proud of two things; his grandson and the scholarship we have created in his name. 

Jeff with his Dad at his wedding

The last conversation I had with my dad we talked about starting and I believe that my dad would be so proud to be a grandfather. 

My dad was really dedicated to the kids he coached and to the city of San Bernardino. Student athletes he coached dating back more than 20 years attended his service and I cannot think of a more meaningful or better way to honor his memory and commitment to the community. 

I would tell people that recently lost someone to suicide that there is no healing, only frustration in going over the “what if” questions. For me it was also important to be patient in finding a meaning or purpose from my loss. 

I look to take motivation from hardship; I needed a different approach to losing my dad. I do not like to feel sorry for myself but needed to let myself feel that way in losing my dad. It didn’t need to motivate me into action, it was awful and it was ok for it to just be awful.

The effects of a suicide loss are long-lasting and far-reaching. Many survivors look for ways to make meaning out of their loss and celebrate the life of their loved one. There are many wonderful organizations that provide life-saving suicide prevention programming. The Carson J Spencer Foundation elevates the conversation to make suicide prevention a health and safety priority. Through a variety of prevention programs, Carson J Spencer Foundation is changing the face of suicide loss. Whether you partner with our organization, or another, we encourage you to get involved. Giving a gift, in memory of a loved one lost, can help create the meaning that so many seek. For more information, please visit www.carsonjspencer.org.

I Lost My Son, Dylan, In The Murder-Suicide at Columbine

Guest Blog by Sue Klebold

Sue with Dylan

International Survivors of Suicide Loss Day is the one day a year when people affected by suicide loss gather around the world at events in their local communities to find comfort and gain understanding as they share stories of healing and hope. We have learned that stories of lived experience are one of the best ways to fight the discrimination and prejudice often associated with people living with of mental health conditions and suicidal thoughts, behavior and loss. People sharing stories of moving from despair to hope and recovery help inspire others to get involved in the movement.

Saturday, November 19, 2016, is International Survivors of Suicide Loss Day, and thus, we are highlighting a loss survivor’s story and her search for meaning after loss.

Sue Klebold lost her son, Dylan, on April 20, 1999. He was one of the two shooters in the Columbine Tragedy. Her grief and recovery has been a long process. She became connected to the Carson J Spencer Foundation as she started to learn more about suicide and suicide prevention. Today, she is part of the Suicide Prevention Coalition of Colorado, the American Foundation for Suicide Prevention’s Loss & Healing Council, and a valued volunteer of the Carson J Spencer Foundation. This is her story:

I lost my son, Dylan, in a murder-suicide.  He and his friend murdered 12 students and a teacher, and injured more than 20 others before taking their own lives. He was very smart, funny and well-organized.  He had a great sense of humor and made me laugh.  

He loved trying new foods and new experiences.  I will always miss him. 

Dylan taught me what it feels like to be completely proud of a child, and to understand how blind we can be to someone’s inner suffering.  

I have honored his memory and the memory of those he killed by writing a book, A Mother’s Reckoning: Living in the Aftermath of Tragedy, and donating the proceeds to brain health and suicide prevention organizations.  Because of Dylan, I try to make things better for others. 

My grieving process was complicated because of the murders involved.  Years of grief were convoluted by lawsuits, public condemnation, and personal health problems.  The loving support of friends and family helped, along with therapy, reading about suicide, journaling, drawing, exercise, and connecting with other survivors of suicide loss.
I derived meaning by learning about the suicidal mind.  I began to accept that his judgment was impaired at the time of his death, and this helped me cope with the reality of his destructive behavior.  

I hope he would be proud that I honor his memory by trying to improve mental health care for others.  I want him to know that nothing he did could ever make me love him less than I do. 

Recovery is a process.  At first, we are victimized by what has happened to us.  We feel devastated, confused, grief stricken, and helpless.  As time goes by, we slowly move from feeling like a victim to feeling more like a survivor.  We don’t know how we made it, but we want to help others who have more recent losses or who are struggling.  We find that by trying to serve others, we slowly gain strength and balance.  Eventually, we may become advocates, driven to make a difference in a larger sphere of influence.  We see that we never have to stop loving or missing the person we lost, and we remember them with joy, honor, and gratitude.    

The effects of a suicide loss are long lasting and far reaching.  Many survivors seek to make meaning out of their loss and celebrate the life of their loved one. There are many wonderful organizations that provide life-saving suicide prevention programming.  Carson J Spencer Foundation seeks to elevate the conversation and make suicide prevention a health and safety priority.  Through a variety of prevention programs, Carson J Spencer Foundation is changing the face of suicide loss. Whether you partner with our organization, or another, we encourage you to get involved. Giving a gift, in memory of a loved one lost, helps to create the meaning that so many seek.

On December 6^th, Colorado will celebrate a statewide day of giving – Colorado Gives Day.  On December 6^th, your gifts go further, thanks to a $1,000,000 incentive fund created by Community First Foundation and FirstBank.  To schedule a Colorado Gives Day gift to the Carson J Spencer Foundation, please visit here.

How to Support Someone Who is Grieving

Photo by Alexsandar Radanovic

By Emily Alvarez

When someone close to you experiences extreme loss, you want to help. Words often fail at this time and we’re left faltering for the right thing to do or say. When flustered, it can be frustrating to find the “perfect” way to support or respond. One can be so scared of doing the wrong thing, they end up doing nothing. While doing nothing is an option, it’s not a very good one.

While there’s no one perfect way to respond or support someone, here are six tips on how to support someone who is grieving.

1. Their loss is not about you.

Grief belongs to the griever. If you’re taking a supporting role to someone who is grieving, it’s important to remember that their grief is not about you. Most suggestions, advice, and “help” that are given don’t actually help the griever. It tells them that they should be feeling differently than they do. Grief is different for everyone, so you can’t expect one person’s experience to match another.

2. Stick with the present and the truth.

While it might be easy, try to avoid making statements about the past or future. Try to stay away from generalized statements about their situation. There is no way you could know if someone is in a “better place” or “finished their work here.” These platitudes don’t make anyone but the giver feel better. Reminding the griever that their past life was good isn’t a great trade for their current pain. These are the statements that work: “this sucks”, “I love you”, “I’m here.”

Photo by Fellowship of the Rich

3. You can't fix this.

Your friend’s loss can’t be fixed, solved, or repaired. This pain can’t be made better. Skip saying anything that tries to fix this unfixable thing and you’ll be fine. Your first instinct is to try to fix things, but unfortunately, you just can’t. Be supportive without trying to fix.

4. Anticipate, don't ask.

If you say, “call me if you need anything,” your friend won’t call. Not because they don’t need help, but because figuring out what their needs might be is beyond their ability. Make tangible promises like, “I will be there on Monday at 5:00 pm to make you dinner” or “I’ll walk your dog every morning on my way to work.” Don’t wait for them to ask for help, anticipate that they will need your help. On the flipside, don’t do anything irreversible. Don’t surprise your friend by doing the laundry or cleaning the house without asking. You might be cleaning the last piece they have of their loved one. Do simple tasks that, while necessary, can make a difference.

5. Become a buffer.

Photo by Tim Marshall

When someone is grieving, having people constantly coming up to them or wanting to give support can be overwhelming. What should be a personal and private time can feel too open. Becoming a buffer between others and your friend can take a load off their plate. Be the go-between and relay information to the outside world or organize the well-wishers. Buffers are really helpful.

6. Love.

Above everything else, love. Be there. Be a friend. Show up. Say and do something. Be willing to stand beside the giant gaping hole that opened in your friend’s life without out turning away. Listen. Be willing to not have all the answers. Be willing to get the answers they need. Be present. Show your love.

Brothers Lost: How I Found Meaning After Tragedy

By Emily Alvarez

Dennis Gillan

Stories of lived experience can be used to fight the stigma of mental illness and suicide and to help get people involved in the movement. These journeys humanize the suicide prevention movement and help other people seek help. This series on lived experience is a great chance to highlight a loss survivor’s story and the search for meaning after loss.

Dennis Gillan is a mental health advocate and inspirational speaker as well as a friend to our organization. He lost both of his brothers to suicide eleven years apart. This November, we want to focus on lived experience and share stories of finding meaning from loss and despair. This is his story:

I lost my older brother Mark in 1983 and my younger brother Matthew in 1994 (insert curse words here!).  Mark could fix almost anything.  Neighbors would drop off electronics and he would repair them.  I really wish he could have hung in there to see the computer revolution come along. 

Matthew was the punk little brother we all loved.  He was seven years younger than me and only 13 when our older brother died.  Mark was 21 when he died and Matthew was 23….too young.  Mark and I had our sibling rivalry going and were often tangled up in some sort of mess, while Matt was the one I could transfer all of my knowledge to---and there was really not much to transfer, but we shared a love for sports especially lacrosse.  I used to put him in the goal and shoot on him---no wonder he became a goalie for the team. 

Mark on the back porch

With my older brother, Mark, I was at college over 8 hours away and I came home, did the funeral, and headed back and pretended nothing happened.  

Bad move. 

I kept all the emotions in and drank heavily…horrible combination. And the fact that we were not talking about it may have cost us Matthew.  The entire family should have sought out some form of therapy to help us cope with this loss, but we just went on.  

When Matthew died I was married and still drinking a fair bit.  That all stopped with his loss and I have been sober for 22 years.  And after Matthew’s death I sought out counselling through an EAP and that made a big difference.  Sobriety and counseling is what I preach today when dealing with any loss. 

I have done a couple of things to help me make meaning from this loss. I worked on the 800-273-TALK line while in Batavia, IL under the tutelage of Stephanie Weber. This was very helpful for me and for the people calling in.  Someone who knows what a loss due to suicide feels like is the perfect person to answer the phones!  

Matthew in third grade.

I am now involved with the American Foundation for Suicide Prevention here in South Carolina and this alliance has enabled me to lobby at a federal and state level for better access and more money for mental health and this has been really enjoyable.  We are making headway and hopefully this will help us make a dent in the number of completed suicides. 

One is too many----over 42,000 is ridiculous and we ought to be ashamed at this number as a country!  

The final and most impactful way I take meaning from this loss is to take my story on the road and share it with anyone who will listen!  The talk is great, but it is the conversations afterward that often blow me away.  Everybody is going through something…..we just need to talk about it more! 

After years of sitting on my hands and doing absolutely nothing, I started to talk about my brothers and my experience of trying to get back on my feet.  Every time I speak about them I feel like I honor them and the last school I visited had over 800 kids show up for this talk!  It helps me to remember them by sharing this story in the hopes that no one else will go through what I went through----twice. 

Mark and Matthew on the porch

Mark and Matthew would be most proud of what happens when I walk off stage and the real conversations about mental health start!  I’m not an expert on mental health issues, but I am a pretty good conversation starter and when I get done showing people that I am vulnerable, the temperature drops in the room and people start to share their stories. And when this starts to happen, the healing starts to happen too for all of us! 

My advice to give someone who has recently lost someone to suicide is to hang in there, sober up, and go see a professional.  There is no stigma in asking for help and there is strength in vulnerability.  Everything you will feel will be normal and it will range from intense anger to deep sorrow and everything in between.

The effects of a suicide loss are long-lasting and far-reaching. Many survivors look for ways to make meaning out of their loss and celebrate the life of their loved one. There are many wonderful organizations that provide life-saving suicide prevention programming. The Carson J Spencer Foundation elevates the conversation to make suicide prevention a health and safety priority. Through a variety of prevention programs, Carson J Spencer Foundation is changing the face of suicide loss. Whether you partner with our organization, or another, we encourage you to get involved. Giving a gift, in memory of a loved one lost, can help create the meaning that so many seek. For more information, please visit www.carsonjspencer.org. 

How to Resist Psychiatric Injustice on National Coming Out Day

By Jess Stohlmann-Rainey

Today is National Coming Out Day. I remember the first time I was excited about this day. It was my first year of college, and I felt so liberated from my oppressive and traumatic high school experience. It was the first time I thought I could be proud about my identity and be supported by the community around me. I felt like I had left discrimination in the dust when I moved away. As it turns out, I had some prescription strength rose-colored glasses on, but I wouldn’t trade that feeling for the world.

Later that same year, I had my first encounter with a therapist who blatantly treated my sexuality like the root cause of all my problems. I had experienced some bad providers before, one who even told me I may not be able to hold a job or move out of my parents’ home. This was different, and worse. This therapist seemed to believe that a fundamental piece of my identity might cause me interminable pain. The most unbelievable part of it is that this person considered themselves an ally, and even had a Safe Zone sign plastered on the wall. At the time, I wrote all of this off as an individual problem with this therapist. Now I know better.

The mental health system has a sordid history, and that history is intertwined in current practice. It is particularly sordid for queer people. (Whoa – why are you using the word queer?) Those of us who work in mental health and suicide prevention do a pretty bad job of acknowledging this history and apologizing for it. I get it, it isn’t easy to admit when you’ve screwed up. It is particularly hard when the screw up destroyed people’s lives. The problem with not acknowledging and apologizing is that it denies the very real experiences of people being harmed by the system. That’s called gaslighting, folks. While it might make the mental health community feel better, it completely obliterates the ability to address the last vestiges of this painful history – very real, very destructive discrimination.

A History Lesson

I could write volumes about the history of queer people’s interactions with the mental health system, but I won’t. There is an even deeper dive than what I am going to discuss here.

1850-1945

For the first time, queer identities enter into the mental health scene. During this period of time, queer identities are pathologized and criminalized, and “therapies” are utilized to try to eliminate people’s queerness, but end up just attacking their humanity. The myth that queer people are crazy, dangerous, and criminal, upheld by the mental health community, is leveraged to ban queer people from entering the country and joining the military.

• LGB identities are characterized as pathologies, associated with psychopathy and criminal behavior
• Trans* identities are considered sexual pathologies
• Frontal lobotomy and electroshock therapy are recommended treatments for queer people
• Queer people are banned from entering the country and from the military because they are “dangerous”

1946-1970

During this time period, queer people are further pathologized, although the type of pathology shifts around some.  The Diagnostic and Statistical Manual of Mental Disorders enters the scene, serving as a teaching tool and guiding manual for all providers. The DSM includes queer identities as disorders and painful, harmful therapies are recommended treatments.

• Trans* identities are associated with psychopathy
• DSM categorizes homosexuality as a sociopathic personality disorder, then as a personality disorder
• Pharmacological aversion therapy and electroshock therapy are recommended treatments for queer people

1971-1984

Lots of progress was made toward the end of deinstitutionalization. This was a time of progress for many marginalized people. The major mental health associations and institutions got on board with progress, but didn’t do much in terms of reparations or apologies.

• Sodomy laws repealed in many states
• Queer people represented at American Psychiatric Association
• Activists work to increase protective factors in the queer community 

1985-Present

In the last twenty years, there have been great strides in rectifying some of the blatantly discriminatory practices. Some of the biggest wins are below.

• Homosexuality removed from the DSM
• Don’t Ask, Don’t Tell compromise instituted and repealed
• American Psychological Association condemns conversion therapy, supports marriage equality and second-parent adoption
• Sodomy laws ruled unconstitutional

Photo by Daniel Watson

If you just look at the wins, the last twenty years look pretty good. Unfortunately, the remnants of this difficult history still impact people’s lives today. There are no national standards requiring that mental health providers receive training about the unique needs of queer populations. Gender confirmation surgery, hormone therapy, etc. require a mental health diagnosis and treatment for insurance coverage. Medicare/Medicaid require that consumers receive a diagnosis to qualify for treatment. The leading cause of death among queer people age 10-24 is suicide. Conversion therapy is still legal in the United States.

It’s a setup. Queer people are systematically excluded from high-quality care, and because we don’t get what we need, we struggle. The struggle is often used to pathologize our identities further, creating a vicious cycle. We are treated by mental health professionals who are untrained and unprepared to work with us. We are stigmatized both as consumers and as queer people. We are over-diagnosed with some conditions, underdiagnosed with others. Data collection is not inclusive of queer people or does not ask demographic questions necessary to become inclusive. Diagnostic studies rarely consider queer identities as a factor. We are highly likely to be exposed to trauma. Minority stress increases the severity and frequency of our mental health symptoms, and marginalization interferes with connectedness – the cornerstone of suicide prevention.

Getting What You Need in a Broken System

The system is clearly broken, but for now, it is the one we have. As a queer person, working in suicide prevention, with 15+ years of mental health services under my belt, I have developed a few tricks to get what I need when the system isn’t enough.

Make Your Good Practice Checklist

I developed my checklist so that I could look at a website, make a phone call, and/or walk into the waiting room without paying a copay and decide whether or not I should give providers a chance to work with me. Everyone’s list could look a little different, but here are some ideas of what you might include.

• Non-discrimination policy
• Inclusive intake forms
• Inclusive restrooms
• Inclusive language
• Queer people represented on website/print materials/office

Interview Your Provider

Anyone who has experienced an intake knows how rough that process can be. The problem with intakes for me is that they put all the power in the provider’s hands. My way of leveling the playing field is to refuse to do an intake until I have gotten to interview providers. The types of information I look for are: the provider’s attitudes about queer people and my diagnosis, their experience with people like me, how they make therapeutic decisions, their approach to forced treatment, how many people they have put on a 72 hour hold, and what training they have had. Here [JS1] is a handy list of some sample questions I have developed with some peers.

Photo by Sharon Pittaway

Find Alternative and Additional Pathways to Recovery

Traditional mental health treatment is not the only path to recovery, and isn’t right for everyone. I have been both helped and hurt by the traditional mental health system, so a combination of traditional services and alternatives ended up being the right route for me. Some alternatives to consider are: mindfulness, volunteering, activism, dance/movement therapy, art/music therapy, sobriety, getting outside and doing nature things, peer support, spirituality, massage, acupuncture, and homeopathy.

Link Up with Your People

I can’t say enough about the benefits of finding people like you to support you through dark times, share their wisdom, and lift up your voice when you speak truth to power. Finding my people has been integral to my wellness.

Making Queer Spaces Inclusive

While we are working on changing the system, we can also make our queer spaces better. Often times, queer spaces are not intentionally designed to support queer people who experience mental health challenges. To make our spaces better, we can:

1. Provide mental health resources
2. Advocate for education for mental health providers
3. Educate our groups about mental health and accessing care
4. Advocate for parity
5. Offer dry/sober activities outside of recovery meetings
6. Train our constituents and leaders in mental health and suicide prevention

Making the System Better

System change is slow and challenging. One of the best ways to influence system change is to educate the people within the system to push back. Seven things mental health providers can do to improve the system

• Educate yourself about queer issues
• Advocate for national training standards about queer identities and issues
• Do not practice conversion therapy and advocate that it be outlawed
• Do not conflate queer identities with disorders, pain, or suffering
• Use identity affirming intake paperwork
• Represent queer people in your advertising, website, and office
• Recognize and celebrate queer holidays and remembrance days

In honor of National Coming Out Day, I want to invite my peers in suicide prevention and mental health to challenge themselves. Learn and grow. Do not let the history or our institutions define us. It is our responsibility to make the world a safer place for people to come out.

In her book, Daring Greatly, Brene Brown says: “Courage starts with showing up and letting ourselves be seen.” Congratulations to all my queer family who are daring greatly today.

****

[JS1]

·         How is social justice incorporated into your practice?

·         Have you worked with suicidal clients or attempt survivors before?

·         What kind of services do you think suicide attempt survivors typically need?

·         Have you worked with clients who are generally well, but use services for maintenance?

·         What types of therapy do you use most often?

·         Do you have specific training about behavior therapy? What training? When?

·         Have you had specific training about suicide? What training? When?

·         What does it mean for your clients to be well?

·         When do you think someone should be done with therapy?

·         What do you do when you think a client is lying or avoiding certain issues?

·         How many clients have you put on an M1/72 hour hold?

·         What is the process of putting a person on that hold?

·         When you have put people on a hold, have they come back to you for treatment?

·         What do you do to ensure your client’s dignity while they are in your care?

·         What types of concerns/conditions do you think you are best at treating?

·         Have you treated clients in interracial relationships? What unique challenges do they face?

·         Have you treated clients who are bisexual? What unique challenges do they face?

·         Have you treated people who work in the mental health field? What challenges do they face?

·         Have you treated clients who are substance users? What unique challenges do they face?

·         Do you use a harm reduction approach?

·         Have you worked with clients with severe and persistent or recurring suicidal intensity?

·         What has your experience working with people who have Borderline Personality Disorder been like?

·         What are deal breakers that would lead you to terminate treatment?

·         What is your strategy for developing a treatment plan?

The Suicide Prevention Problem: We Need To Listen To the Real Experts

By Jess Stohlmann-Rainey

Photo by land[e]scape

Suicide prevention has a problem. There are some really important people whose voices are being left out. Some of the most important people. The people who know what it is like to want to die, but choose to live.

The lived expertise of suicide attempt survivors has been pathologized by the mental health community, and because of this it is often treated as invalid, unreliable, uneducated, or otherwise ill-informed. The production of knowledge in the field has come from one primary source: the “objective” researcher. There are a number of concerns with this being the primary source of knowledge production.

1. Objectivity in research is a myth. The positionality of the observer impacts the way results are understood or interpreted. For example, most of the big names in suicidology are men. Men die by suicide much more frequently than women, and women attempt suicide much more frequently than men. As a field when we look at reducing the public health “burden’ of suicide, we look at reducing the number of deaths. This means that somehow, someone decided that the primary issue when it comes to suicide is suicide death. This puts the focus on reducing death and loss, not necessarily on changing, interrupting, or preventing the experience of suicidal intensity. Phrases like, “men bear the burden of suicide in the United States,” appear in public health documents and suicide prevention programs alike, but is that really the case? Would the women attempting suicide at four times the rate of men think that is true? Would their loved ones? Is the experience of suicidal intensity not a burden? Interpreting the meaning of numbers is almost certainly affected by the culture and identity of the person doing the interpreting.
2.  Research funding is not neutral or equitable. Funding institutions have interests and priorities that are propagated by their investments. Returning to the example above, if the knowledge being produced tells us that we ought to focus on reducing death as opposed to reducing suffering, funding institutions will invest their money into research and strategies designed to prevent death. While this is not necessarily a bad thing, it does leave a significant gap around the practice of alleviating suffering. This means that while suicidologists may agree that means restriction is one of the most effective ways of preventing death (that we know of), it may not have any impact on the things that matter most to the person who is actually experiencing suicidal intensity. If suicide prevention just means literally preventing a death from occurring, it may be missing the bigger and perhaps more important issue of existential suffering.
3. Where and how research is conducted are also not neutral or equitable. The vast majority of research is conducted in one of two ways. First, on college campuses or the community immediately surrounding research institutions. This means that participants in research reflect the campus community, tending to be higher income, highly educated, white, etc. Second, through a paternalistic approach which positions the researcher as a savior or rescuer, removing all power and agency from the subject. This feeds directly into the issues of the pathologization of the experiences of suicide attempt survivors.

None of this means that all research is bad, that the information we have is wrong, or that all research is conducted using these approaches. It does mean that some very important knowledge is being left out: the lived expertise of people who have considered and attempted suicide.

Photo by Luis Llerena

Seeing this valuable perspective marginalized within the field that is intended to support people experiencing suicidal intensity was frustrating for me, both as a professional and as a suicide attempt survivor. In 2015, the Carson J Spencer Foundation made a decision to put more emphasis on suicide attempt survivors in our programming. This shift opened an opportunity for me to develop programming by and for suicide attempt survivors.

The entire process of developing this program, from the questions we asked in the needs assessment to the analysis of the information collected has been completed by people who identify as suicide attempt survivors. Through the needs assessment process, we found a set of common experiences that participants felt were core components of their path to recovery.

Key Experiences

Five important categories of experience emerged consistently from people’s stories. What we heard, over and over again in the more than eighty interviews with suicide attempt survivors, is that the following experiences needed to happen for them to identify themselves as in recovery.

Becoming Willing to Live

Most people think that all suicide attempt survivors have this moment following a suicide attempt where they feel like they made a huge mistake, they wanted to live all along. Based on our interviews, some people had this type of experience, but it was more common for people to give in to the idea of living. We heard things like: “I figured out that being alive wasn’t the worst thing, even though it hurt...” and, “When I was in the hospital I was alone, in the corner with my dunce cap like “you have to find a way to stop hurting yourself.” Becoming willing to live is no easy process, and while it can be transformational for people, it doesn’t change all the factors that contributed to people’s desire to die. It is just the first step.

Finding Refuge

The next common experience was for people to seek out sheltering, positive, nonjudgmental spaces to heal. Some found physical spaces, like the participant who returned to her college town. “I went back to the town I went to college in because It was the last place I remembered feeling good,” she said, even though she didn’t know anyone who was still living there. Others found refuge with people who felt supportive. Another participant said, “I lived with friends who were safe, loving, and supportive. It was so much better than family.” Finding refuge is like laying the foundation for the other parts of the process.

Photo by Jochen Vander Eecken

Speaking Truth

Participants felt significant pressure to be silent about their experiences. They heard they should not talk about it from mental health providers in group therapy, their families, their friends, their doctors. Keeping their experience a secret was at best, annoying or frustrating, and at worse, shaming and contributed to more acute suicidal intensity. Telling was an important experience. One participant said, “It was just burning on my tongue. I felt like I had this big secret and I couldn’t go on keeping it. So I told. Then I couldn’t stop telling.” In The Transformationof Silence into Language and Action, Audre Lorde says “I have come to believe over and over again that what is most important to me must be spoken… I was going to die, if not sooner, then later, whether or not I had ever spoken myself. My silences had not protected me. Your silence will not protect you.” All of the participants expressed the sentiment that giving voice to experience was liberatory. One participant asserted, ”I felt so powerful when I finally talked about it. Like I wasn’t a slave to my secret anymore.”

Finding Kinship

Once participants began telling their stories, they began searching for others like them. Because their identities as suicide attempt survivors were so often erased, and the discrimination they faced was so significant, finding kinship networks of people who understood their experience became incredibly important. Being able to share recovery strategies, talk about the challenges they faced without judgment, and provide mutual support was integral to their journey. There has been a pervasive practice within the mental health system of not allowing suicide attempt survivors to share their experiences openly in groups, whether or not a clinician was present. It is clear from these interviews that survivors are not only finding each other and having these discussions anyway – one participant stated, “What was so weird was that in the hospital we weren’t allowed to talk about our attempts. So we said, “fuck you,” and started our own outside group afterward. We are still friends.” – but that finding kinship and solidarity with other suicide attempt survivors is an irreplaceable part of recovery. One participant explained how vital finding this network was, saying, “I just knew there had to be more people like me, and it was so much worse for us to just be all alone.” This was frequently cited as the most important experience. The importance of connectedness as a protective factor has been confirmed by suicide prevention research many times, so it is not surprising that this process was so imperative to the participants.

Developing Power

The final key experience that emerged was to developing power by making meaning of the experience. This experience was defined by actions that allowed something positive to come from their suicide attempt. The two most common ways of developing power were helping and activism. One participant served as Court Appointed Special Advocate for abused and neglected children. She explained, “I wouldn’t say I was “recovered” until after I started volunteering as a CASA. I couldn’t believe they let me do it, actually. I was so dark and twisty, who would let me help kids? But they did. It changed my life. I was part of something and it healed my soul.” Another participant worked on a crisis line, saying, “Once I got on that hotline everything changed. I was whole again, and I could help people. That was the moment I knew I would live. Really live.”

It is important to note that that throughout these interviews, there was no treatment or experience with the mental health system that participants identified as integral to their recovery process. This doesn’t mean that traditional mental health treatment was not effective; for some people it absolutely was. When in this process people found traditional treatment helpful varied greatly, and many of the participants did not find benefit in traditional treatment modalities at all. These findings indicate that recovery requires much more than traditional therapy, and that some practices in the mental health system actually prevent these key experiences from occurring.

What Next?

The mental health and suicide prevention communities should examine how these experiences are being supported or discouraged in their practice. Reducing the barriers to these experiences and promoting opportunities for them to happen. This information can also help friends and family of suicide attempt survivors better understand their experience.

The Carson J Spencer Foundation is using this data, along with other data gathered in this process to inform the development of a new care package for suicide attempt survivors leaving hospitalization settings. The contents of the package will be designed, reviewed, and approved by suicide attempt survivors, and will serve as a companion through the complex experience of recovery following a suicide attempt. For more information about this data, the collection process, or the development of this new program, please fill out our contact form with the subject “SOSA Blog”.

“Words Make Worlds”: Language and the Culture of Mental Health in Workplace Wellness

by Donna Hardaker and Sally Spencer-Thomas

Part III: Words about Mental Health

In Part I: “Words Make Worlds”: Language and the Culture of Mental Health in the Workplace”, we explored the rationale for being mindful and intentional about language as we address stigma and social prejudice due to archaic and unconscious speech. In Part II, we addressed specific language about suicide. Here in Part III, we look at specific language about mental health.

“Power is the ability to define reality and to have other people respond to your definition as if it were their own.” – Wade Nobles

“Words are powerful. Old and inaccurate descriptors and the inappropriate use of these descriptors perpetuate negative stereotypes and reinforce an incredibly powerful attitudinal barrier.” – Kathie Snow

Workplaces are microcosms of society as a whole and have a significant contribution in generating social inclusion or exclusion. Workplaces can be powerful change agents when they create caring cultures through mindful attention to how suicide and mental health are discussed.

Photo by Benjamin Child

It is difficult for us to write this article in a simple “Say This” and “Don’t Say This” way. The topic is far more complex than swapping out words. This discussion is inside of a social movement (generally referred to as the recovery movement) that seeks to draw attention to unconscious bias held by the powerful dominant group who own and operate the communication methods that describe people who are not in the dominant group.

Generally, clinicians are the dominant group who name this experience. Clinicians use diagnosis-based thinking. Thoughtful language about mental health and suicide does not rest on diagnostic categories, but rather tries to communicate more clearly, accurately, individually and holistically about the experience. We constantly look to find language that is dignified, empowering, and inclusive as well as being as descriptive as possible.

This is not about political correctness. It is about altering how we all speak, and therefore how we all think, in order to permanently end social injustice in this area. Just as with other social justice movements, polite society no longer accepts these terms: “mental retardation”, “handicapped”, “colored”.

It is not easy to find “the best” language; we are forced to use common terminology developed by the dominant group that does not emanate from the empowered voice of the people being talked about:

1. The terms are often clinically based and clinically biased. Many people in the recovery movement push back against the term “mental illness” because it puts the descriptor of a person in medical language. This forces a medical presence inside the naming of a group who do not always wish to be identified based on a medical perspective. The medical model, when socialized in the media and in boardrooms, contributes to rampant oversimplification that looks like this: “All that has to be done is to get these ill people to seek treatment, they take a pill and they are fixed!” It is important to keep in mind that diagnosis serves the medical practitioner in treatment planning. It does not provide good information or understanding about the whole person and encourages us to see a person only in terms of a medical condition. And diagnosis is often incorrect, so should not be the focus of how we educate.

Clinical bias mostly does not include a trauma-informed approach. It is very common for people who have received a label regarding mental health or substance use to have a significant history of trauma. 

This correlation is ignored in the language, and often in treatment too. The trauma experience is not addressed, only the set of “symptoms” currently seen.

2. The choice of words is not mindful. In heavy usage is the word “suffering” as in “people who suffer from depression”. This paints a pathetic picture of nothing but suffering inside this experience, which is a fallacy while suggesting a passive state of inaction.

Another common term is “the stigma of mental health”. This word usage infers that there is stigma inherent inside of mental health. Instead, words should more accurately describe that stigma is an attitude of prejudice towards a group of people by a group of people who are dominant. See below for suggested alternatives.

3. Terms promote “other than” thinking. The words “disorder” and “disability” inform us that those who fall into these categories are other than “ordered” or “able”. “Order” and “able” are the givens, the desirable things, the “normal” things.  “Dis” infers “other than” and forces the thought that a person described this way has a value relative to the desirable given, and of course falls short. 

Consider this: the term “non-white” is not used to name a person who is other than Caucasian because it would be deemed to be disrespectful. Unfortunately, we do not have a wording solution to this dilemma.

4. Better terms require more words. Because we are forced to use terms that represent dominant culture mindsets, we can refer to them as labels, not as the “truth”. For example, a better way of saying “a person who has a mental illness” could be to say: “a person who has the experience of having been assigned a medical label in the category called ‘mental illness’ “. But this makes writing and speaking very cumbersome.

5. We do not have consensus around best language. Inside the recovery movement, we do not have consensus on best language, and that is okay. Let’s all keep thinking about this, talking to each other and pushing us collectively toward better communication.

The chart below provides some principles of progressive language. The suggestions that appear in the right-hand column are far from perfect, and we hope that they will continue to adapt and improve. To fulfill our desire to support self-determination, please note that if a person with the lived experience of a mental health challenge wishes to identify themselves using language from the left-hand side of the chart below, we support their choice.

(This is not an exhaustive list, and for reasons of space does not hold all the terms and usage that we wish would change.)

Moving language away from…	Moving language toward…
Phrases that perpetuate incorrect thinking ·         “stigma of mental health” ·         “mental health stigma” Infers that there is something inherently stigmatizing about mental health.	More appropriately descriptive phrases ·         “stigma, discrimination and social prejudice towards people who are deemed to be in the group labeled as having a mental illness” We recognize that this is too long, but let’s continue in this vein! Especially important is the insertion of “social prejudice” to call out the group who are engaged in the attitudinal damage.
Words that promote only one aspect of the experience ·         “people suffer from a mental health challenge” ·         “people who struggle with a mental health challenge” It is inaccurate to indicate that the entire experience is one of suffering and struggle.	·         “have a mental health challenge” ·         “lives with a mental health condition” ·         “living through suicidal thoughts.” Language here begins to communicate resilience. It could be appropriate to speak about functional impact with use of the word “struggle” ·         “overcomes struggles with concentration” ·         “finds ways to cope with the struggle of fatigue”
Confusing lay usage of clinical terms ·         “he is acting so bipolar” ·         “the weather is schizophrenic”	Test your language by swapping out a term for an experience that is generally accepted, for example, you wouldn’t say “he is acting so diabetic” or “the weather is cancerous”
Hate speech ·         “psycho” ·         “cray-cray” ·         “nutjob” ·         “whacko” ·         “lunatic”	Respectful language that promotes dignity. Ask: would you enjoy the word being used to name someone you care about? ·         ”a person in distress” ·         ”a person in emotional distress” ·         ”a person with a history of psychological distress” ·         ”a person experiencing a mental health challenge” ·         “a person living through overwhelming life challenges”
Language that cuts a broad swath and defines people by their conditions. ·         “the mentally ill” ·         “the homeless” ·         “the disabled”	Wording that recognizes individual experiences and differences. ·         “people who have mental health challenges” ·         “people who live with mental health issues” ·         “people whose experiences are labeled as a mental illness” ·         ”people who experience homelessness”
Language that uses clinical or legal identifiers ·         “a patient” ·         ”a case” ·         ”a client”	·         ”a person who is engaged in treatment” ·         ”a person who is receiving services”
Language that emphasizes a diagnosis, not the person ·         “he is a schizophrenic” ·         “she is bipolar” ·         “he is an addict”	People-first language ·         ”he is a person who has received a diagnosis of schizophrenia/bipolar disorder” ·         ”she is a person who experiences addiction” ·         ”he is a person who identifies as an addict” Shorter, but problematic due to diagnosis as a descriptor: ·         “he has schizophrenia” ·         “she lives with an anxiety disorder” ·         “she is in treatment for depression” ·         “she is coping with the effects of trauma.”

Portions of this chart have been adapted with permission from Each Mind Matters, California’s Mental Health Movement, funded by counties through the Mental Health Services Act (Prop 63).

In conclusion, words matter, especially where there is such a long history of marginalization, misinformation, and mystery around daunting topics. When it comes to language related to mental health, we may not have all the right answers, but many of us are in the struggle to do better.

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ABOUT THE AUTHORS

SALLY SPENCER-THOMAS: As a clinical psychologist, mental health advocate, faculty member, and survivor of her brother's suicide, Dr. Sally Spencer-Thomas sees the issues of suicide prevention from many perspectives. Currently, she is the CEO and Co-Founder of the Carson J Spencer Foundation, a Denver-based organization leading innovation in suicide prevention. One of the main programs of the Carson J Spencer Foundation is “Working Minds: Suicide Prevention in the Workplace” – the nation’s first comprehensive and sustained program designed to help employers with the successful prevention, intervention and crisis management of suicide (www.WorkingMinds.org). Additionally, she is the Co-Lead of the Workplace Task Forces for the National Action Alliance for Suicide Prevention, and the Co-Chair of the Workplace Special Interest Group of the International Association for Suicide Prevention.

DONNA HARDAKER:Donna is an internationally recognized industry expert in the emerging field of workplace mental health. She is an award-winning curriculum developer, advocate, public speaker, writer, and advisor, who has leveraged her personal experience of mental health challenges and their impact on her employment history into a significant body of work. She is the Director of Wellness Works, a workplace mental health training program of Mental Health America of California that has been evaluated as highly effective in stigma reduction with lasting behavior and culture change. She is also a member of the Workplace Task Force for the National Action Alliance for Suicide Prevention. Donna is from Toronto, Canada, but now lives in Sacramento, where she greatly enjoys the California sunshine.

Learn more about the National Action Alliance for Suicide Prevention: http://actionallianceforsuicideprevention.org/