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After Orlando: A Mom Who Knows Talks Mental Health

With reports that the shooter in the Orlando tragedy displayed behavioral and emotional problems as far back as elementary school, violence and mental illness have again become linked in the public conversation.

Headshot of Liza Long

It’s a combination that worries Liza Long. As the parent of a son with bipolar disorder, she knows how easily the fear this evokes can translate into stigma against all those with mental health challenges.

The reality behind violence and mental illness, however, as she’s learned through her work as a mental health advocate, is much different: “Only 3 to 5 percent of all the violence in the U.S. is caused by someone who has untreated mental illness,” she said. In fact, as research confirms, those with mental illnesses are much more likely to be victims of violence than perpetrators.

The key word here, Long emphasized, is untreated.

“The number one frustration I have is that when we talk about violence and mental illness, we’re talking about untreated mental illness, and that needs to be really stressed.” With proper treatment, support and services, she said, those with mental illnesses “are no more likely to be violent than anyone else.”

A Mental Health SOS

The problem, of course, is that access to effective, timely, quality treatment, along with the needed social support to build on improvements, is often hard to come by. Long and her family know this all too well.

In 2012, right after the horrifying deaths at Sandy Hook Elementary School by a young gunman named Adam Lanza, Long did something many considered shocking. She wrote openly of her fear that this might one day be her son.

The blog was titled “I Am Adam Lanza’s Mother,” and in it, Long spoke with desperation and emotion of watching her then 13-year-old genius-level son alternate between being a calm, sweet boy who adored Harry Potter and stuffed animals to a fearful presence who punched holes in walls, pulled knives, exhibited hostile behavior at school, and sometimes threatened to kill his mother and himself.

She detailed her son’s trips to the emergency room, trips to jail (the only way to get a paper trail and get help for her son, social workers told her), and the years of varying diagnoses, medications and therapies. For her sake, for her son’s sake, for the nation’s sake, she sent out an SOS, urging a real conversation about mental illness, an end to the stigma, and adequate services for those who are struggling.

She had planned to write anonymously, but, as she explained in a 2013 TEDx talk, a friend convinced her otherwise, saying, “Until people are willing to put their names on these stories, this isn’t real.” (She didn’t reveal her son’s name, however.)

Liza Long, MotherThe blog went viral, and it not only inspired a passionate conversation and caused her to become a mental health advocate, it led to a new life for her son. A doctor who read the blog contacted her to say it sounded as though her child had bipolar disorder. It was, at last, the correct diagnosis.

Today, with the proper medication and therapies and by tending to his emotional wellness, the rages are a memory. Life isn’t all “sunshine and roses now,” Long said. “Bipolar disorder is a chronic, lifelong illness, but we don’t have the violent behavior.” Eric is now 16 and has become a mental health advocate as well, recently sharing his story in a TEDx talk of his own.

“That’s why treatment and support are so important,” Long said. “Our family’s story is a classic example. Once my son got the right diagnosis and the right treatment, all that violence stopped. We were talking about this last night, in fact. Looking back on his childhood, the rages, the fear that everybody felt, and patching holes in drywall and calling the police — that all it took was the right diagnosis and the right treatment and that all went away.”

The Price of Silence

Just as important to the outcome is dealing with the stigma around mental illness, because it doesn’t matter how good treatment is or how easy it is to access if the person feels too embarrassed or ashamed to admit they need it.

That’s why Long worries when tragic events seem to draw a line from mental illness to violence. Among the uninformed, it can feed into the sense that those who are struggling with their mental health are to be feared and shunned.

“That’s really the challenge,” she said. “And I’ll be the first to admit: I was the mom who wrote about my child’s mental illness in conjunction with a mass shooting. That is a thing. I did it. That was certainly not with exploitative intent though. I was just in crisis mode.”

But she also knows the price of silence. She chose the phrase, in fact, for her book The Price of Silence: A Mom’s Perspective on Mental Illness, published in 2015. It’s been called an excruciatingly honest examination of how our nation’s mental health system so often fails those who need help most. “Liza’s ability to share the truth about her family’s experiences is changing history, making it possible for others to step out of the darkness of isolation,” wrote Janine Francolini, founder and board chair of The Flawless Foundation, in a review of the book.

Long, who calls Idaho home and recently returned to teaching at the community college level after years of being in administration, also writes about mental health on her blog, The Anarchist Soccer Mom, often speaks to groups, and contributes regularly to the Huffington Post and Psychology Today. She is also on the boards of the International Bipolar Foundation and her local National Alliance on Mental Illness (NAMI) chapter.

It’s not just those who are close to the person with the mental illness who have a role to play, Long emphasizes. We all can be part of creating a world in which mental illnesses are responded to without dangerous delays, and with as much support and matter-of-fact professionalism as illnesses such as cancer.

For those who want to be part of the solution, Long offers this advice:

1. Close the Empathy Gap

Too often we shame, blame and shun those dealing with mental illnesses rather than reaching out. Encourage people to share their stories. Offer a listening ear and a helping hand.

Long noted that her church recently asked what could be done as outreach for those dealing with a mental illness diagnosis. “I said, ‘Form a casserole committee.’ They said, ‘Really?’ And I said, ‘You don’t understand what a huge statement that sends. It normalizes the experience.'”

2. Take a Mental Health First Aid Course

These relatively new courses are being offered in more and more communities and function as a kind of CPR for mental health. Participants learn about risk factors, how to spot warning signs of someone in a crisis or a non-crisis situation, and where to turn for help.

It’s not mental health policing, Long explained, or trying to replace the role of the therapist or counselor. It’s simply a way of becoming more responsive when someone around you — whether family, friend, coworker or stranger on the street — is struggling. “You can’t solve their problems for them, but you can be a human being with somebody.”

3. Tackle Stigma

The best way to do this? “Get to know someone with mental illness,” Long said. That can be as easy as volunteering with a mental health organization. She recalls a company that sent its employees to help out at a NAMI event. “We had all these people, who said, ‘Oh, I don’t know anyone with mental illness.’ And by the end of the night, their whole attitude had changed. Because once you talk to people who are living with mental illness, it just changes how you view it.”

Long also makes this point: 1 in 5 children in the U.S. has a serious mental health disorder, and 1 in 4 U.S. adults will deal with a mental health issue in any given year. “So seriously, if you tell yourself you don’t know anyone, you are just not creating a safe space for that person to talk.”

Dealing with stigma also means being sensitive in what you say and do. Asking someone if they took their meds, for example, or naming your school mascot “The Maniacs,” or joking about bipolar hair days or how OCD you can be only perpetuates stereotypes and negative perceptions. She knows people rarely mean to be unkind, “but this is suffering. It’s not funny. It’s not the punch line of a joke.”

4. Throw Your Weight Behind Political Action

Join others in calling for and supporting legislation such as the comprehensive mental health reform bill currently working its way through Congress. And make a commitment to renounce the “not in my backyard” thinking that can keep desperately needed mental health facilities and group homes from being part of our neighborhoods.

“The challenge is just that the problems are so widespread,” she said. “We’re dealing with basically 30 years of neglect for this area of health.”

5. Don’t Deny Problems

Most crucially of all, when issues arise, seek help.

“If you have those feelings, you need to address it. It’s so easy to be like, ‘Oh, he’s just a boy.’ Or ‘it just happened that one time.’ It’s got to be addressed.”

Long knows how tough it can be to find the proper care, and she works for the day when everyone has access to the kind of support and treatment that helped her son regain his life.

There’s still far to go, but a surge in research and in our understanding of mental illness makes her hopeful, as do political efforts and what seems to her to be a growing acceptance of those with mental health issues among the young.

“One thing I’ve been impressed by when I’ve spoken at schools is just how open and forthright a lot of kids are now. And I think it’s great because it normalizes it. For example, Eric’s really open about himself in his school these days, and nobody cares. And that’s where we need to go — where people are like, ‘Oh yeah. Whatever.'”

By Kendal Patterson
Follow Kendal on Twitter at @kendalpatterson

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