🎧You Listen | Chapter 37

Sarah Fay

Oct 20, 2023

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Sweets sits outside the bathroom door and meows. I splash water on my face and turn to let him in. Dripping on the tile, I don’t open the door far enough. Doors are something of a mystery to him. Instead of pushing on the door itself, he paws at the space between the door and the doorjamb, which doesn’t achieve his intended aim.

I dry my face and walk to the kitchen. He trots after me, hopeful because any trip to the kitchen could lead to a treat.

On my phone are more emails from people who’ve read my memoir Pathological, which recounts my twenty-five years in the mental health system and investigates the flaws in the psychiatric diagnoses we use in treatment. I open one:

While I do find it useful and validating to understand that my brain does function somewhat differently than the norm, I have also been gravely harmed my misdiagnosis, over diagnosis, and over treatment (including being so over-medicated that years of my life are mostly lost to my memory.) At some point in my life I have been diagnosed with: adhd, ocd, PMDD, PTSD, bipolar II, Bipolar I, bipolar I with psychotic features, BPD, major depression, GAD, SAD, panic disorder, specific phobia, body-focused repetitive disorder (that's just what I can remember). I've been hospitalized 3 times, been to 3 partial hospitalization programs, and been prescribed literally every psychiatric medication available at some point. Once I stopped letting these diagnoses define me, I became healthier and happier. I have a family, a successful career, and my mental health. Yes, my brain can be a bit outside the norm, but not like I was led to believe. I don't know how to share this experience. How to find others who have experienced similar harms. If I speak out, I'm afraid that people will use it as evidence that I actually am crazy. I'm also afraid of that my diagnostic history being used against me (legally, career-wise, etc.) Thank you for your book, for this campaign. I hope that I can contribute my story and voice to help move this campaign forward.

Another is like the many others I’ve received from parents worried about their children who started in the mental health system young:

My 32-yr-old son started on a path of so many diagnoses we've lost count AT AGE 4. I'm ashamed to admit this although I fought it at the outset while my now ex-husband and the pediatric neurologist/psychiatrist agreed something needed to be done. So at age 4, he was prescribed Ritalin for what we were told was ADHD. Through the years, the diagnoses have changed along with a mile-long list of medications. Today, he considers himself a failure, an ugly, obese, waste of a human life. He's tried to work, but ultimately gives up every job within two or three months. He's never dated and probably never will. My heart aches for him.

I want so much to help him—to help all of them, to tell their stories, too. To say to people, We need the truth. The truth empowers us.

A Google alert on my phone tells me when the words mental health appears in a news story and links to the articles. The media is hooked on what has been called the teen mental health crisis by the White House, the U.S. Surgeon General, The New York Times, and others. As The Times reports, it isn’t all due to Covid. Between 2016 and 2020, diagnoses of anxiety increased by 29 percent and depression by 27 percent in children and teens.

For a young person struggling, a psychiatric diagnosis can be a lifeline, but young people are romanticizing them on social media and elsewhere. Some diagnoses are “cool” and “trendy.” They’re memes. TikTok therapists advise about them, and TikTok videos convince teens they have rare ones. Self-harm has been glamorized on Instagram and normalized on Tumblr. In a Vogue video, Kylie Jenner hears from a clinician in real time that she has social anxiety. News blogs encourage self-diagnosis via symptom checklists. Anxiety and depression are merchandized. Teens are self-diagnosing via Tik Tok videos and other social media.

These teens aren’t faking their mental and emotional pain. They want a simple reason to explain why they feel the way they do, and diagnoses seem to offer that.

Occasionally, diagnoses are empowering, like in the autism community. They all could be if people knew the truth: They’re invalid and typically unreliable, not caused by a “chemical imbalance,” and none is necessarily lifelong.

I want to say to every young person entering the mental health system: Please don’t think of yourself as a diagnosis and use it to limit yourself. No matter what is happening, it is possible to recover. Please don’t let anyone tell you otherwise.

People adopt a diagnosis as an identity because they’re wrongly told psychiatric diagnoses are lifelong. If a diagnosis will always be with us, then it is us—or at least part of us.

If our mental health system followed the recovery model, not the maintenance model of mental illness that says the most we can hope for is to manage our symptoms, it wouldn’t be this way.

It shouldn’t be this way. William Anthony, psychologist and founder of Boston University’s Center for Psychiatric Rehabilitation, predicted that the 1990s would be the decade of recovery and patients’ rights.

Policy-wise, it was bookended by two landmark moments: the passage of the 1990 Americans with Disabilities Act (ADA) and the U.S. Supreme Court’s 1999 decision in Olmstead v. L.C. (Olmstead). Both protected the civil and human rights of people with mental illnesses in the community and treatment. President George Bush senior signed the ADA, which prohibited discrimination against people with physical and mental disabilities regarding employment, public services, and accessibility. Olmstead said that states have to provide services for those ready to transition out of institutional care; in other words, it’s unlawful to isolate and essentially imprison those who can participate in the community.

During this time, what’s known as the Recovery Movement gained notoriety and grew in numbers. The government’s Substance Abuse and Mental Health Services Administration (SAMHSA) awarded Judi Chamberlin, a figurehead in the movement, the Distinguished Service Award. Two seminal groups formed. Mindfreedom, an international organization open to anyone who supports human rights, and Hearing Voices, which argued that auditory voices characteristic of psychosis aren’t necessarily a sign of mental illness. The National Empowerment Center began its mission “to carry a message of recovery, empowerment, hope and healing to people with lived experience with mental health issues, trauma, and/or extreme states.” The Wellness and Recovery Action Plan (WRAP), which would become an integral tool used in recovery, started. The first National Summit of Mental Health Consumers and Survivors was held.

But instead of being the decade of recovery, the nineties was the “decade of the brain.” Legally. President Bush (the same President Bush) signed into law House Joint Resolution 174, which required all public officials and people of the United States (not kidding—that’s true) to engage in programs, ceremonies, activities, publications, and research that enhanced “public awareness of the benefits to be derived from brain research.” The patient no longer matters as much as the patient’s brain.

The first-ever Surgeon General’s Report on Mental Health came out in 1999 under the Clinton administration; it was monumental in that it was the first government document to mention recovery. But it stated—without evidence—that recovery didn’t mean full recovery. It also harkened to the biomedical model, heralding a “scientific revolution” that was more fantasy than reality. The answers to our mental health were supposedly hidden in the brain—any brain. Treatment was the domain of experts. The clinician dictates care because how many patients really know how the amygdala works anyway?

The brain-as-the-source-of-mental-illness-and-treatment idea undermined the most important factors in recovery: personalization, autonomy, self-determination, and hope.

It was never a fair fight: the person and their environment versus the brain and its neurons? The decade of the brain won.

My friend from high school, Anne, looks at me as we walk past the budding purple flowers along the nature walk. Like many of my friends from that time, I lost touch with her when I became a full-time patient of the mental health system at age seventeen. She looks the same as she did in high school: sweet face, chin-length dark hair, bright eyes. It’s like she hasn’t aged. I don’t remember ever seeing her upset or distraught or teenager-ish at all. To my mentally disordered mind, she seemed impossibly well-adjusted. I envied her for that.

But there’s a worried expression on her face. She doesn’t seem to notice the flowers as she says, “I don’t know what to do.”

I’ve always loved Anne’s voice. There’s an energy to it with just a slight uplift of joy; today, it’s subdued.

She’s in town visiting from Kansas City. We’ve been in touch on Facebook. She messaged me after she heard about my book. Her fifteen-year-old daughter was diagnosed with major depressive disorder and put on medication.

“I just don’t know what to do,” she says. “She’s struggling. What will her life be like? She may not be able to go to college.”

“Whoa,” I say. “There’s no evidence that depression is lifelong or even chronic.”

Anne’s eyes widen. “What?”

I tell her about the studies that have shown the falsehood that mental disorders are definitively chronic despite there being no evidence that the diagnoses we receive are lifelong. I reassure her that some people will have recurrent depression, but she’s caught it early and gotten her daughter help. She’s done everything right. Now, they can focus on healing. “Didn’t her psychiatrist and therapist talk to you about recovery and an exit strategy for maybe going off her meds as she recovers?”