The Mental Health System Was Failing My Daughter – So I Made a Documentary About It
Editor’s note: This story has been published with permission from the author’s daughter. If you experience suicidal thoughts, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741-741
For years I went to bed at night fearing I’d wake up to find my daughter’s body, cold and dead. The imagination is cruelest when it plays with real possibilities. She had anorexia, depression, anxiety and was suicidal. When she was not in a treatment center, she had weekly therapy with a psychologist. But it seemed like the more she worked with professionals, the worse she got. By the time she reached her senior year of high school, she was pleading to die.
Still I had to believe the professionals were doing the best they could and that things were getting worse simply because mental illnesses are extremely complicated. That’s what I told myself and that’s how I lulled myself to sleep at night. It’s how I was able to endure year after year, and how I was able to write check after check.
As I waited for a miracle, I began to read as much as I could, to understand for myself the illnesses that plagued my daughter, thinking maybe I could help fix everything. But I stayed in the waiting room when she talked to her therapist. An hour later, when we went home together, I would ask about the session but she wouldn’t talk much. It was devastating to feel entirely left out of the therapeutic loop — not only the illness but now the treatment itself stood between us. I longed for deeper connection with my struggling daughter.
I think part of the reason it hurt so much was because I believed that if I could understand more, I could help more. It felt unbearable to simply sit on the sidelines. This was my daughter, a girl I had loved all her life. A girl I prodded out of bed in the morning. A girl I drove from place to place. A girl who haunted my mind for hours each night and stole away my sleep. A girl I could perfectly remember as a newborn, how healthy her pink body seemed and how she loved to be held. And now I felt helpless, just waiting for whatever magic was taking place behind closed doors to finally kick in. It was miserable.
And so I read. Book after book. The more I read, the more discontent I felt toward the behavioral science field. I quickly found the most effective, evidence-based treatments for adolescent anorexia was, hands down, Family Based Treatment. This is a manualized treatment that brings the family into the therapy session and teaches them skills to help re-feed and rebuild their child. It connected the person who was struggling with his/her family. And yet after 10 years of therapy, this treatment had never been used for my daughter.
How is this possible?
Ten years and tens of thousands of dollars, and none of the professional therapists had bothered to adhere to or inform me about the latest science? It was incomprehensible, almost unbelievable. I thought I must not understand something about my daughter’s case. I was just beginning my research after all, and the people treating her had years of education. That’s what I assumed. But then I read a blog by Tom Insel. It was his last blog as President of the National Institute for Mental Health. Talking to the mental health professionals, he stated: “We can save lives, many lives, simply by closing the unconscionable gap between what we know and what we do.”
After reading this statement and the blog post it came from, I wondered (and later confirmed) that maybe I had been right about my daughter receiving poor treatments. But what I found to be the case was even more horrifying. According to the research, it was not just my daughter who was receiving bad treatments, but also the vast majority of patients with mental illness.
It was almost too large to comprehend. I reeled with the awakening, like I had risen from a deep sleep in the middle of the day. It was not some conspiracy theory. All the science and the very top leaders of the United States Institute for Mental Health were saying it. The message was clear: in America, most of the time disproven, outdated treatments or sub-optimal treatments are used for patients with mental illness. It is simply wrong— “unconscionable” as Tom Insel put it.
And so I decided to do something about this unconscionable gap between therapy and research.
For 15 months I crisscrossed the nation interviewing top professionals, individuals with a variety of mental illnesses and families who had children with mental illnesses. Working with professional filmmakers, we made a documentary identifying the root causes for the gap between research and practice and why practitioners are so hesitant to include family in treatment.
The outcome of these interviews is the documentary “Going Sane: The Insanity of Mental Health Care In America.” If you are struggling to understand why the mental health field is failing your child, this will not only explain many of the problems you face, but also help you overcome them.
Parents cannot assume the therapies their children receive are up to date. It’s shocking, it’s discouraging, it’s almost unbelievable. But it’s true. And the most obvious example is that most therapists exclude family from therapy sessions, even though family involvement has been proven again and again to be crucial to successfully treating most mental illnesses.
If you’re left in the waiting room while your child goes off to see a therapist, that’s a big red flag. Watch “Going Sane” to understand why families continue to be excluded from treatment and why they need to get involved. It will change how you approach treatment, empower you to get better treatment and give you hope for the future. I know, because I’ve been there.
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Lead image via Going Sane