The Perils of Misdiagnosis
I am 23 years old, yet I have already lost five years of my life to the full-time job of being crazy. It began innocently enough; I went to my student health center at American University to speak to a counselor about some mild depression. The university counseling center was overcrowded, so I was referred to an off-campus psychiatrist in D.C. I vividly remember sitting on a stiff leather chair in a stark white office as this doctor asked me a list of questions from a sheet of paper. After less than 10 minutes, I was diagnosed with generalized anxiety disorder (GAD) and depression, and prescribed Neurontin and Lexapro. It was the reality of what happens when doctors dole out diagnoses without getting to know their patients.
My first summer home from college I sought treatment again. This doctor decided I was bipolar, and prescribed me a mood stabilizer and a different antidepressant. I immediately noticed a change; instead of feeling sad, I felt nothing. My thoughts were fuzzy and I had a hard time remembering to do simple things. One afternoon I went to see a movie with my friend and left my keys in the ignition with the car running and the doors locked.
My doctor decided to add Ritalin to the cocktail, and by the end of the summer I was taking 60 milligrams a day, the highest approved dose for adults. My life spiraled out of control when I went back to D.C. that fall. I was barely sleeping or eating. I felt paranoid sitting in class, so I stopped going. By October, I was forced to take a medical leave of absence, and lost my academic scholarship.
My story is unique, as is the story of every person diagnosed with mental illness. The stakes for me and so many others were not just about mental wellness. They were also about both my economic and educational future. I am still grappling with the financial consequences of misdiagnosis. My psychological maelstrom meant I lost my substantial academic scholarship. I was forced to pay hefty tuition costs after leaving American. I was ultimately shuffled into inpatient psychiatric care, which can cost as much or more than a private university. My credit score is abysmal from unpaid medical bills. Falling behind in school means having to wait longer to find a full-time job in my field. While some of my high school peers are finishing up their second or third degrees, I am just finishing up my bachelor’s. My monetary future at times seems bleak.
I didn’t know it at the time, but when I was initially diagnosed I was part of a larger trend. A study led by Mark Olfson of the New York State Psychiatric Institute at the Columbia University Medical Center shed light on the striking increase in diagnoses of bipolar disorder among children and young adults, and the number of Americans suffering from mental illness so severe that they qualify for government assistance has increased two and a half times from 1987 to 2007.
Of course, medication can help the mentally ill become productive, healthy members of society and we must continue to make sure that psychiatric help is available to those who need it. But what happens when we err too far on the side of caution and misdiagnose? It happens more often with poorer Americans. Patients from a lower socioeconomic status struggle to find decent mental healthcare, and without insurance it can be impossible to get an accurate diagnosis. According to a 2011 study by the Kaiser Commission on Medicaid and the Uninsured, 45 percent of adults with untreated mental illness cite cost as a reason for their lack of treatment. The Substance Abuse and Mental Health Services Administration produced a study with similarly bleak findings in 2013. While 43.8 million Americans suffer from mental illness, not all are being treated. Out of the 62 percent of untreated Americans surveyed with severe mental illness, half reported cost as the reason.
Private rehabilitation centers or psychotherapy is out of the question for these people, and many patients who can afford to seek help are relegated to free clinics or state-funded psychiatric centers. As a patient in one of these centers, I saw firsthand how difficult it was to receive treatment. We could go days or weeks without speaking to a doctor. Patients were given medication without counsel, and their doses could change without warning. In private hospitals, a patient’s length of stay is determined by their progress, and mental health assessment. In a state psychiatric ward, your length of stay is determined by two things. If you are a danger to yourself or others, you will stay. If your insurance runs out, you will go.
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Over the course of six months in 2011, I was prescribed Klonopin for anxiety, Seroquel and Lithium for mania, Trazodone for insomnia, and various amphetamines for chronic fatigue. The great irony of my story is that many of these drugs were prescribed to combat the effects of the others. If I complained about a side effect of a certain drug, the course of action wasn’t to lower the dose, it was to increase the dose of something else. At one point, I was taking seven pills a day.
I gradually got better, though not because of the drugs. What helped me was getting back into school, traveling, and starting a relationship with the love of my life. In the fall of 2014, five years after my initial diagnosis, I weaned myself off of all prescription drugs. I am now living a normal life.
I’ll never know what would have happened had I never been given that initial diagnosis. Certainly I was unhappy at the time, but was my unhappiness so great that it warranted mind-altering drugs? Could I have been helped by talk therapy alone? For years, I fed into what my doctors were telling me—I was manic, psychotic, lethargic, and anxious. The labels hovered over me as I went about my daily life. They became my identity.
I have a new identity as a college student, girlfriend and all-around healthy person. But sometimes I am reminded of life as an institutionalized person. At the county-funded hospital, nurses would open bedroom doors every 15 minutes to check on patients. It didn’t matter if we were sleeping, showering or getting changed. Of course, this level of attention is necessary for some patients. But a one-size-fits-all treatment plan is dehumanizing to those who don’t require such attention.
The patients who received the most attention were the volatile ones, those who screamed, hit or bit nurses and other patients. They would receive medication like Thorazine, an antipsychotic drug that would render them near-comatose. Sometimes, these patients would defecate on themselves.
By the time I saw a legitimate psychiatrist, I was so anxious to leave that facility I would tell the doctor whatever it took to get out. I was fine, I wasn’t having panic attacks, and I was ready for life on my own. I would hastily leave without a treatment plan, and rush back into the real world.
Investigative journalist Robert Whitaker explored the dangers of misdiagnosis in his book, Anatomy of an Epidemic. He believes the scientific literature shows that many patients treated for a milder problem will worsen in response to a drug.
And let’s take a look one of the most commonly diagnosed disorders for young people—attention deficit hyperactity disorder (ADHD). In 2012, the Centers for Disease Control and Prevention reported that more than 5 million children between the ages of 3 and 17 have been diagnosed with ADHD. According to the Mayo Clinic, ADHD symptoms include daydreaming, fidgeting, difficulty paying attention, and talking out of turn. If severe enough, these symptoms can be detrimental to a child’s growth and development. However most of these symptoms are normal in healthy children.
Children who are treated for ADHD are generally prescribed stimulants. If a child actually has the disorder, these drugs are believed to calm them down. When a child who does not have the disorder takes these drugs, the opposite occurs, and their behavior becomes erratic.
According to a 2005 study by Jill Norvilitis of SUNY Buffalo and Ping Fang of Capital Normal University in Beijing, 82 percent of teachers and 68 percent of undergraduates in the U.S. believe “ADHD is over diagnosed today.”
“The notion that a brainy, introverted boy might legitimately prefer the world of ideas over the world of people is hard for most people to accept,” writes Enrico Gnaulati in Back to Normal: Why Ordinary Childhood Behavior Is Mistaken for ADHD, Bipolar Disorder, and Autism Spectrum Disorder. According to Gnaulati, social stereotypes contribute to misdiagnosis—introverted adolescents might be singled out and diagnosed merely for not fitting in with society. Being shy might not make you popular at a high school party, but it is certainly not a mental illness.
David, a 26-year-old student who prefers his last name not be used to protect his medical privacy, remembers distinctly his first time sitting in a psychiatrist’s office as a child. “The doctor was asking me questions—‘did my brain feel like a pinball machine’—that he was reading from a sheet of paper, without looking at me,” said the upstate New York college junior. “My elementary school teachers thought I might have ADHD because I had trouble paying attention in class,” he told me, “But the pills they gave me made me not want to eat or sleep, and I still couldn’t focus.”
David was later diagnosed with depression, borderline personality disorder, and anxiety disorder. He believes his anxiety and depression may have been triggered by the early diagnosis of ADHD, and being given stimulant medication at a young age. “Just because someone is a little abnormal,” he said, “Shouldn’t necessarily mean they need to be labeled as having a disorder, and given drugs.”
Of course, many have been helped by psychiatric diagnoses. Treatment, counseling, and medication have saved countless lives. Untreated mental illness can lead to suicide, violent crime, and a lifetime of misery.
Still, for me and a number of others like me, diagnostic labels negatively altered the course of our lives when we were young. It would have helped if the doctors David and I and so many others saw understood a simple truth: that we can grow out of mental health issues without aggressive therapy and medication. Generally, doctors need to spend more time with patients before giving them a diagnosis and subsequently, a prescription. And even though there is no current DSM-5 criterion for “student debt,” mental health professionals should also be more aware of the economic impact of even the smallest diagnoses.
Q&A: Lisa Di Venuta
Lisa Di Venuta is a recent college graduate from SUNY New Paltz, and is headed to the New School to study creative nonfiction writing.
Co-published with Alternet.