Is There a Mental Health Misinformation Effect?
Is There a Mental Health Misinformation Effect?
From Memoirs to TikTok
My friends, I have some bad news.
(I think it’s bad news.)
I was hoping to traditionally publish my next book to get mental health recovery into the cultural conversation at a time when it is sorely needed. That book is a version of Cured, which I serialized here on Substack and the sequel to Pathological: The True Story of Six Misdiagnoses (HarperCollins).
But it turns out that traditional publishers only want books about mental health written by medical professionals. (As if medical professionals haven’t done enough damage.) Publishers are worried about lawsuits, liability, the dissemination of misinformation, etc.1
It makes total sense.
We live in the mental-health-misinformation age, an epoch of thirty-second reels recounting bipolar episodes and the five ways you know you have ADHD:
Mental health influencers give sketchy advice about everything from anxiety to autism and OCD to capital-and-lowercase-t trauma.
Young people self-diagnose on TikTok and Instagram and advise others to do the same.
A recent study found that 83 percent of mental health advice on TikTok is misleading, and 14 percent of videos include content that could be potentially damaging. Only 9 percent of TikTokers advising on the platform have a relevant qualification.
The effects of this Wild West mental-health frontier are perilous:
Diagnoses are reified, leaving people uninformed about their flaws and the ways they can act as self-fulfilling prophecies.
Stereotypes are reinforced when the one thing we know about mental disorders and mental illness is that it’s wholly individual.
Stigma has increased for many disorders, particularly those with psychosis as the primary symptom.
Here’s the thing: Mental health misinformation didn’t start with social media.
It’s deeply woven into the fabric of the mental health memoir’s history, including four seminal books, one by a psychiatrist:
William Styron’s Darkness Visible: A Memoir of Madness (1989)
Kay Redfield Jamison’s An Unquiet Mind (1995)
Susan Kaysen’s Girl, Interrupted (1993)
Elizabeth Wurtzel’s Prozac Nation (1994)
These books taught me that the mental health diagnoses I’d received were valid and reliable, as medically sound as cancer diagnoses.
They failed to tell me that the legitimacy of The Diagnostic and Statistical Manual of Mental Disorders (DSM) has been questioned time and again and that DSM diagnoses are, as Steve Hyman, Former Director of the National Institute of Mental Health put it, “scientifically meaningless.” They didn’t say that no DSM diagnosis is valid, i.e., no test or biological marker can confirm that anyone has a DSM diagnosis. Or that DSM diagnoses don’t have clear cut-off points to measure normal versus abnormal. Or that DSM diagnoses haven’t been shown to be genetic or chronic.
These memoirs didn’t explain that DSM diagnoses are rarely reliable, i.e., two clinicians can’t consistently diagnose the same patient with the same disorder. They’re based entirely on self-reported symptoms and the opinion of a clinician.
Like social media today, these mental health memoirs, while groundbreaking for their time, didn’t empower readers with information about the shaky science behind DSM diagnoses and the dangers of identifying too closely with a label.2
Styron’s Chemical Imbalance Myth
When I read William Styron’s Darkness Visible in my twenties, I devoured it the way today’s youth binge mental health content on TikTok—absorbing both profound insights and dangerous misconceptions without realizing the difference.
Darkness Visible is a raw, beautiful, harrowingly understated memoir. (I read the book in nearly one sitting.)
He writes movingly of his depression diagnosis—and gives us false information about it.
He taught me—wrongly—that depression is caused by a chemical imbalance, is chronic, and often ends in suicide—none of which is true.
He calls depression a disease, which it isn’t. To call a condition a disease, physicians must be able to give a patient a relatively clear sense of a diagnosis’s cause, symptoms, treatment, and prognosis—none of which we have for mental health diagnoses like depression.
To be fair, Styron believed his diagnosis was valid and reliable. He speaks with reverence of the DSM. Darkness Visible was published over ten years before the controversies surrounding the DSM crescendoed in 2013.
But the misinformation in Darkness Visible remains; it’s all over social media, which shows how persistent mental health myths can be—whether shared in a bestselling memoir or a viral social media post.
Jamison's Romanticized Diagnoses
I read Kay Redfield Jamison’s An Unquiet Mind (1995) two years before I received my bipolar diagnosis. Looking back, Jamison reminds me of the young people on TikTok romanticizing their diagnoses.
To Jamison, DSM diagnoses aren’t to be interrogated or shied away from. They’re the stuff of genius and creativity. Jamison writes of her manic-depression tenderly, almost lovingly. She describes having a sense of flying and touching Saturn during her manic highs and falling into “lacerating,” black moods during her suicidal depressions.
Nothing would have made me question Jamison’s authority. She is—and was—on the faculty of Johns Hopkins, one of the best medical schools in the country, and co-author of the classic textbook Manic-Depressive Illness: Bipolar Disorders and Recurrent Depression.
Jamison encouraged me to glorify my diagnosis. Little did I know how teens would later turn their diagnoses into status symbols, badges of honor, and proof of their uniqueness.
Kaysen’s interruptions
Kaysen’s Girl, Interrupted (1993) reminds me of today’s mental health influencers. The memoir tells of Kaysen’s experience as a teenager at McLean Hospital in the 1960s. It’s captivating but rife with misconceptions about diagnoses I didn’t catch until years later.
Readers would be hard-pressed not to take her claims about borderline personality disorder as factual. By including her medical records, Kaysen seems to report on her diagnosis as someone with first-hand experience.
But BPD didn’t exist when Kaysen was at McLean. It didn’t become a DSM diagnosis until 1980. In 1967 and 1968, staff would have viewed mental illnesses as neurotic responses to life events—not “brain diseases” as Kaysen describes them.
I’m struck by how Kaysen’s memoir prefigures our current social media landscape. It’s raw and relatable, sure, but it also perpetuates misconceptions about mental health diagnoses that can mislead vulnerable readers who are desperately searching for answers.
Our Prozac nation
Elizabeth Wurtzel’s approach in Prozac Nation (1994) is eerily similar to that of today’s mental health influencers on social media. She presents depression as an unquestionable biological disease, encourages self-diagnosis, and finds a strange comfort in the permanence of her condition.
I didn’t read Prozac Nation until after I was diagnosed with major depressive disorder. Surprisingly little of the book is actually about the SSRI Prozac. The drug only appears as the deus ex machina at the end.
Most of her memoir is about her diagnosis of atypical depression. Wurtzel establishes authority by citing statistics; using medical language; and stating that her diagnosis is genetic and biological. “Clinical depression is a disease,” she writes. “One that not only can but probably should be treated with drugs.” Picture that on an Instagram reel with captions.
Prozac Nation encourages self-diagnosis. Though more in-depth than an Instagram reel, the memoir ticks off flawed diagnostic criteria for us to identify with, telling us that if we overeat or undereat, lose weight or gain weight, oversleep or have insomnia, experience mood swings or a loss of interest—symptoms nearly human can identify with—we could be diagnosed with depression, too.
And much the way social media messages lack context and nuance, Wurtzel latches onto her diagnosis. It allows her to avoid looking at other possible causes for her suffering, e.g., drinking, drug use, and her profound immaturity. (Wurtzel is a charming and snappy writer with a strong voice, but oh, the solipsism.)
There is one moment when Wurtzel almost questions the validity of her diagnosis. Wurtzel’s brief moment of doubt—quickly dismissed—feels like a missed opportunity and a lot like watching a TikTok creator almost grasp the complexity of mental health, only to fall back on oversimplified explanations that their followers eagerly consume.
It’s hard to fault the authors of these memoirs. Much like Darkness Visible, Girl, Interrupted and Prozac Nation were written a decade before the DSM-5 came under fire.
Jamison’s spin in An Unquiet Mind feels more deliberate. As a professor of psychiatry (she doesn’t have a medical degree but holds the title at Hopkins), she knew the flimsiness of DSM diagnoses and could have explained it to readers. Though it’s still hard to believe malice was involved. Jamison proselytizes the biomedical model despite the complete absence of evidence for it. Sadly, An Unquiet Mind is still billed as a classic.
The question is what do we do with memoirs that contain inaccurate information? Should publishers add disclaimers?
Should we ask Kaysen and Jamison to write new introductions explaining the controversies and doubts surrounding the DSM? (Kaysen hasn’t commented on that aspect of the book though she has expressed her dislike of Girl, Interrupted for other reasons.) (Wurtzel passed away from cancer in 2020.)
We could rifle through every mental illness memoir ever written and fact check them.
It would be much easier than trying to get every person on social media talking about mental health to do their due diligence. It seems that the worst thing we could do is stop publishing mental health memoirs, whether written by a medical professional or not. We need to hear from people with lived experience of mental illness.
And the public needs something to counter the noise on social media and elsewhere. The beauty of publishing is that it's contained, to some degree. There's a permanent record. There's a trace of what we're saying. There's recourse. So what do we do? Is limiting the number of mental health memoirs really the answer?
I’d love to hear what you think.
P.S. The trend not to publish mental health memoirs may not be as prevalent as I think.
, , Kate Mckeon at , , and others—thoughts?To read Cured (!) and get everything, become a paid subscriber. Get the annual discounted subscription for $30/year—the equivalent of purchasing one hardcover book.
Buy Pathological: The True Story of Six Misdiagnoses (HarperCollins) here:
Yes, plenty of mental health memoirs have been published of late, some bestsellers, but it typically takes a year or two for a book to make it through the publishing pipeline.
I realize that many people find solace in making their diagnosis their identity, which is great. If it works for you, go for it.
I was just writing a post on the lack of depth and breadth that we seem to tolerate in this digital age. I suspect we are experiencing a growth spurt in how we view mental health as we come to grips with how much we don’t know. The complexity of the human mind means that our current diagnostic tools are only a starting point. While it's true that mental illness diagnoses often lack the rigorous scientific evidence we see in other medical fields, it's also true that these diagnoses are evolving. Mental health professionals strive to understand and categorize mental health issues better, and this process includes acknowledging the limitations and working towards more comprehensive, evidence-based approaches. The ongoing research and development in neuroscience and psychology aim to bridge these gaps and provide deeper insights into mental health, ultimately leading to more effective treatments and understanding.
Hi Sarah. I couldn't agree more. The only time a diagnosis helped me was when I was suffering excruciating panic attacks in the 1970s and until I understood the panic disorder diagnosis I thought something had attacked me from the outside (like outer space) and that I was just going completely crazy. I was lucky though...the masters level student counseling me actually explained to me why not having an official diagnosis was a good thing (I was paying via sliding scale vs. insurance). I once read that if you put very few people in a room who had all been diagnosed with borderline personality disorder there could be as many as 250 different symptoms. I hope this all changes one day.