Stigma Fighters: Liza Long

Changing Our Tune
Why We Need a Choir of Advocates to Fix Mental Health

By Liza Long

In the spring of 2003, I sank into a deep depression. I was near the end of my third pregnancy’s second trimester, expecting another boy to join my lively five and three year old sons. The psychiatrist who treated me thought pregnancy hormones coupled with significant life stressors—my then-husband and I were fighting a wrongful termination lawsuit against his former employer—had caused the sudden, drastic change in my normally sunny mood.

I also developed symptoms of paranoia and psychosis: I was convinced that my baby would be born without a brain, and not even my obstetrician’s ultrasonic proof could sway that belief. As I drove my Volvo station wagon on mundane errands—to kindergarten, preschool, the grocery store–I believed that spies from my husband’s former firm were following me. To ease my anxiety, I would pull out clumps of hair. I thought constantly about suicide.

It was my second experience with crippling depression. The first time, I was a college senior coping with a failed engagement and my father’s cancer diagnosis. I “compensated” by severely restricting my diet and adopting an extreme exercise regimen, pushing myself to the point of exhaustion before my caring roommates called on college counselors to help me. In both cases, with medication (Zoloft) and talk therapy, over a period of months, I emerged from that dark place and became “myself” again.

But both times, I felt very alone on my journey from sickness to health. I belonged to a religion that stressed perfection. The few people other than healthcare professionals who knew about my depression gave me spectacularly bad advice. “Just pray more,” one well-meaning friend told me. “God will never give you a trial you can’t endure.” Another asked me with genuine concern about whether I had committed a serious sin. A third told me to count my blessings—my husband, my children, my outwardly affluent life in a wealthy suburb. “You have been blessed with so much,” she said. “Why can’t you just be grateful?”

Today, I am indeed grateful for my personal experiences with mental illness, because they prepared me to appreciate other people’s struggles, especially my son’s. I never imagined that I would become a caregiver for a child with serious mental illness, and that I would have to do it alone. I don’t think any mother holds her newborn child in her arms and expects a serious health challenge. Mental illness is unique in some respects though, because it often takes several years to get a proper diagnosis, the child’s behavioral symptoms may include violence, and some parents are unable to find treatments that work for their children. There are few things worse than watching your child suffer and having no way to help.

After the tragic shootings at Sandy Hook Elementary school in December 2012, I shared my struggle with the world, writing in defense of a woman killed by her son, “I am Adam Lanza’s mother.” Just as I had felt isolated and alone as a patient with depression, I felt alone—and worse, ashamed—as a parent of a child with mental illness. I soon learned I was far from alone. Millions of parents across America are fighting the same fight, trying to navigate the baffling systems of healthcare, insurance, education, and too often, juvenile justice, that comprise our fractured mental healthcare system today.

The best part of sharing my story was that my son got help. With a diagnosis of bipolar disorder, we finally had an answer, a roadmap for treatment, and a medication that worked to manage his behavioral symptoms. He was able to return to a mainstream school and has not verbalized any threats of harm to self or others in nearly two years. At 15, he has what we could never have dreamed of when he was 13: hope.

I also connected to a passionate community of mental health advocates—and inadvertently walked into a minefield. One of my advocate friends has explained the turf wars that characterize this field as follows: “With mental health, everything is personal.” I think that statement summarizes the challenges that characterize an advocacy field as fractured in some ways as the system that serves it.

If something is wrong with my heart, I go to the doctor, and she says, “It could be these six things.” Then we do tests to determine the cause. But mental illness is more complicated. Every person’s experience truly is different, just as every brain is different. The goal is to find what works for you; and the problem is that what works for you may not work for anyone else. You may manage your bipolar disorder, depression, ADHD, autism spectrum disorder, or schizophrenia without medication. Others may manage very well on medication. Neither group is “superior” to the other. Both groups are doing what works for them, and that is what matters.

It seems to me that too much of what we “know” about mental illness is actually what we “believe.” In one corner, we have NIMH Director Tom Insel’s search for biomarkers; in the other, SAMHSA’s focus on peer support. Both may well have value, but meanwhile, suicide rates remain unchanged. These existential differences have a real cost for advocates: We are losing the war on mental illness.

I propose that as mental health advocates, we serve ourselves and those we love best by modeling respect for differences and by highlighting our common ground while also using our differences to create more robust solutions. Task-oriented conflict—disagreeing about ideas—has been proven to create better solutions. Person-oriented conflict—attacking people who disagree with you—has conversely been proven to destroy organizations.

As advocates, we may respectfully disagree about the causes of and treatments for mental illness. We may disagree about Assisted Outpatient Treatment laws (I support them). We may disagree about trauma.
But here are a few things I think we can all agree on:

1. When we talk about stigma, we are really talking about discrimination. People with mental illness face discrimination in education, healthcare, employment, housing, and the criminal justice system. This must end.
2. It is wrong to send people with mental illness to prison. The largest mental health treatment facilities in the United States are still prisons. As many as 75 percent of children in the juvenile justice system have at least one mental illness.
3. We need better community solutions for people with mental illness. Many communities lack basic supports for families. And yet we know that day treatment centers, supportive housing, and true wrap-around services work. They save money and lives.

In the New Year, I encourage all mental advocates to talk to someone who disagrees with you. Find out why that person is so passionate about his or her position. Then find ways to move beyond differences and embrace commonalities. We do not need to speak as one voice. But we do need to create a choir, one that sings a passionate song demanding change from our legislators and from our fellow citizens. Maybe the song we sing is not either/or. Maybe it’s both/and.

Liza Long head shot small

Liza Long is a writer, educator, mental health advocate, and mother of four children, one of whom has bipolar disorder. Her book The Price of Silence: A Mom’s Perspective on Mental Illness (2014, Hudson Street Press), highlights the challenges facing parents and offers solutions. You can follow her on Twitter @anarchistmom or visit LizaLong.com.

  • Liza Long

    Thanks so much for the good work you do to end stigma, and for sharing my family’s story!

  • Susan Inman

    Another wonderfully insightful article by Liza. However, NIMH’s contribution is more than a search for biomarkers. NIMH has been a leader in recognizing and researching the significant cognitive losses that frequently accompany schizophrenia. And NIMH has been researching the cognitive remediation programs that can offer help. People who deny the biological reality of schizophrenia will insist that all the cognitive problems are caused by meds. Those of us who witnessed the puzzling emergence of these losses prior to the onset of psychosis and long before any meds were introduced know better. I discuss these problems in this article: http://www.huffingtonpost.ca/susan-inman/mental-illness-cognitive-loss_b_5664999.html

  • Kitt O’Malley

    I love your metaphor of speaking as a choir of voices. Glad to have your voice along side mine and other fellow mental health advocates.

  • vitabrevisphoto

    We have a lot of work to do. Thank you for leading the choir today, Liza. I am proud to stand with you.

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