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“I Really Don’t Want You to Know About My Disorder”

A recent study found that 66 percent of adolescents with ADHD “substantially underreported” symptoms because of the shame and embarrassment from mental health stigma. Doctors say this is a huge, persistent problem.

This piece was originally published on Broadly.

When I’m feeling so low that I cancel plans with people I love in order to binge-eat noodles with my hands, I feel like a jerk, and I definitely don’t want to talk about it. Symptoms of mental illness, including a lethargy so debilitating I can’t bring myself to grab a fork from the kitchen, can feel like personal failings. For me, it’s the sign of a mood disorder, and I’m not alone: According to the National Institute of Mental Health, as of 2015 about 18 percent of Americans suffer from some form of mental illness, but few seek treatment. A 2014 report from the US Centers for Disease Control and Prevention found that only 35.3 percent of people with severe depressive symptoms said they’d had contact with a mental health professional in the previous year.

People feel shame about their psychiatric disorders, in part, because they’re exhibiting symptoms that are generally considered “bad,” like sadness, inattentiveness, and irritability. Unlike the symptoms of strep throat or the weird rash on your knee pits, symptoms of mental illness are as terrifying to talk about as they are difficult to identify. In the years before my depression diagnosis, I thought I was just exceptionally sad, and the idea of disclosing this—and worrying family and friends—was so stressful it gave me gas. (Yes, stress gas is a phenomenon.)

“These are medical conditions that affect the very fabric of who we are: how we think, how we feel,” said Carol Bernstein, associate professor of psychiatry and neurology at the NYU School of Medicine. “People will say, ‘You’re depressed because of A, B, and C. It must be something you’re doing to yourself.'” The uniquely American pull-yourself-up-by-your-bootstraps mentality convinces people with mental illness that they aren’t doing enough yoga or eating enough omega-3s.

Talking about the inner turmoil that you yourself might not even understand is the key to finding treatment, but that is what people suffering from mental illnesses struggle with the most, according to a number of studies, including a recent one in the journal Assessment that found people with attention deficit hyperactivity disorder (ADHD) tend to underreport their symptoms; in that research, 66 percent of adolescents “substantially underreported” their symptoms, and 23.6 percent didn’t report their symptoms at all. The problem of “underreporting”—that is, not fully communicating, or even recognizing, your symptoms—is often caused by mental health stigma and its malicious cousins: negative self-talk, fear of being labeled as crazy, embarrassment. So people stay quiet, preventing them from getting the treatment they need.

“We receive no education about mental illness in school, and the media continues to portray extreme stereotypes,” said Larry Davidson, professor of psychiatry at Yale University and senior policy advisor for the Connecticut Department of Mental Health and Addiction Services, adding that only one in three people with a diagnosable mental illness will seek treatment. (Some estimates put this number closer to one in two.) “People assume mental illness only happens to other people. [They] don’t recognize the experiences they’re having as symptoms or manifestations of mental illness.”

This confusion is rooted in a widespread lack of education about the lived realities of mental illness—the ones that exist beyond mass-shooting headlines and brief asides in textbooks. “We have lots of data that suggests that people don’t want to tell people because they’ll just be told they’re crazy,” Davidson said.

It took Robert Lewis, a 26-year-old Washington, DC resident, years to receive a diagnosis for his major depression (2010) and generalized anxiety disorder (2014). For Lewis, the impact of stigma wasn’t that people dismissed him when he asked for help—he simply did not ask for it.

“I was concerned that whatever therapist I spoke to would have the impression that it wasn’t a big deal, that I was overreacting,” Lewis said. Unfortunately, his fear was legitimate—he’s visited inattentive, dismissive psychiatrists who don’t bother examining his medical history or listening to him carefully. Lewis thinks that receiving more mental-health education as a child would have pushed him to get help earlier.

“The only education about mental illness that I’d ever gotten before I sought help was from grade-school health classes. We only spent a week on all the mental illnesses,” he said.

In the years before Lewis finally sought help—and he suspects he’s been depressed since around age ten, to put the not-uncommon lag time in perspective—he assumed mental healthcare was just for “straightjacket people.”

People assume mental illness only happens to other people.

Clare Shepherd, a 29-year-old with bipolar II disorder with mixed episodes and rapid cycling, spent her early 20s without a diagnosis, not even seeking treatment, because of a traumatizing high school experience: When she opened up about how she was really feeling, she was committed to a mental institution.

“I worried that if I was up front about what’s going on with me, I might end up in a very bad situation,” Shepherd said. “That made it very hard to seek any kind of treatment, and even once I was there, it was very hard to be honest. Like a lot of bipolar people, I have a lot of suicidal thoughts and impulses that are just kind of like a constant, low-level hum. That’s obviously very upsetting to somebody who cares about me.”

Underreporting continues to be an issue even after diagnosis. “A diagnosis doesn’t really explain to a person what they’re going through,” Davidson said. Talking about this stuff, the only way treatment becomes possible, will always be daunting, but it should feel less isolating. Speaking one’s mental illness into existence—so it’s “real” like a broken toe—chips away at that silencing shame. Often it requires some digging from a professional who is sensitive to the difficulties of reporting symptoms.

Dr. Ellen Littman, a clinical psychologist, says she sometimes has to ask patients 15 different ways before they share their suicidal ideations.

“People’s sense of self is so vulnerable,” she said. “Allowing yourself to be vulnerable enough to tell someone what’s going on—in the face of self-talk like, ‘Why can’t you be like other people?’—is hard. That’s what makes people underreport. I can’t tell you how many suicidal people I’ve had to ask 15 different ways before they’ll finally say, ‘I actually do have a plan.’ They’re not going out there saying, ‘I’m depressed so please help me.’ Our society tells [people] to pull yourself up by your bootstraps.”

This past winter, Shepherd was more honest with her mother about her illness than she’d ever been. She’s glad she was.

“It’s hard for me to tell even in myself what are thoughts that should be worrying me,” she said. “I don’t want worry people if I don’t feel like I’m sure that I’m in danger. But I felt like I was.”

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