9 Rounds of Electroshock Therapy. 6 Years Lost. All Because Her Doctors Got It Horribly Wrong.
She’s lying on a gurney in a white room, a blanket covering her body, an IV pinched into her arm. A nurse is sticking electrodes to the side of her head, like stickers. Soon they’ll send electric currents into her brain, inducing a seizure.
She’s aware that she’s been in this hospital before. Twenty-four years ago, she was born here.
Now she’s undergoing electroconvulsive therapy (ECT), a sort of last-ditch treatment for severe depression and other psychiatric issues that will attempt to shock her out of years of intractable symptoms.
She lies on the gurney. The anesthesiologist is here now, the drugs flowing into her veins. Her last thought before the room goes black is that this won’t work-she knows it won’t. Because she’s not depressed.
This story has been pieced together through Courtney’s* recollections, in addition to what she has been told by family and doctors. Because of her ECT treatments, there are significant gaps in her memory. Cosmopolitan confirmed the major details of this story with a member of Courtney’s family and via her medical records.
When Courtney was a senior in high school, she got sick with something like the flu-but her symptoms never left. An avid rock climber, she was suddenly exhausted after walking up one flight of stairs. She’d get dizzy when she stood up. She had bouts of sore throats and fevers.
A straight-A student who was on track to graduate valedictorian of her class, she also started having out-of-the-ordinary academic struggles. For the first time ever, she couldn’t fully focus or comprehend what was happening in school-it was like a fog had settled over her brain. Her math teacher even poked fun at her in front of the other students. He assumed she was just slacking off, since she'd already been accepted to Brown.
When her symptoms didn’t go away after a few weeks, Courtney figured she had mono. She doesn’t remember if a doctor ever explicitly tested her for it. But what else could it mean that she was now capable of sleeping for 18 hours straight? She missed days and days of school. Some classmates started a rumor that she was making it all up. She was too tired to care.
Still experiencing waves of symptoms, Courtney headed off to Brown that summer, hoping to study international relations. She didn’t want to delay college. Surely her mono-which can last six months or longer-would resolve soon. In the meantime, it was like something was blocking the words she was reading in her textbooks from sticking in her brain. Some days, she was too exhausted to go to class at all.
She started worrying that there was something else wrong with her-something bigger. “It became more and more frightening,” she says. A feeling of being trapped in her body, as if what she was experiencing would never go away.
Everyone-doctors, her parents-told her she was depressed. Never mind that she had recurring fevers of over 100 degrees. Depression doesn't do that. She took the Prozac anyway.
But when the meds didn’t work, she felt more hopeless. So hopeless that she left Brown without finishing her first semester-she just couldn’t keep up with the work.
Six years passed-the vast majority of it now filmy in Courtney's mind, like a dream she knows she had but can't quite recall. Her invisible illness had, in a way, made her invisible. Erased from the world. She slept most of the time, in bed with her cat and visited doctor after doctor trying desperately to find answers. Each new specialist offered new medications to try, "every single psychotropic you can imagine," Courtney says.
Her symptoms didn't budge.
“I couldn't bear such a barren existence, lying in bed all day, my body too weak to engage in anything physical and my brain too foggy to process most potential distractions," Courtney says. "I told my mom that I didn't want to be alive anymore."
And with that, her mom drove her to the psych ward.
Once Courtney was committed to the hospital, her struggle to get taken seriously continued. "I know at that point, I was still definitely saying, 'This isn't right, there's something else going on here,'" she says. "Why can't I think clearly?"
“Nobody was listening to me,” she recalls. “I had all of these symptoms that had nothing to do with mental illness, which is not to denigrate the severity of mental illness. But I'd say to doctors, You're diagnosing me with being depressed, but that's not what it is. I had a desire to do things, but I couldn't. That's different than having no desire to interact with the world." She would repeat her symptoms over and over-heart palpitations, fevers, aches.
For years, doctors had turned up no tumor swallowing her brain or breast, no mysterious lump or bump to investigate. She had been tested for a thyroid condition (nope). One psychologist said she must have suffered trauma as a child (also nope).
She recorded her frustration in her journals from the time, which she shared with Cosmopolitan. "This is a whirlwind," she wrote. "Each doctor is giving me a diagnosis and it's adding up to nothing...Dr. G was harsh yesterday...He offered antidepressants and said that if I refused them, there was nothing they could do for me."
Even her parents agreed with the doctors. If something were wrong, wouldn't it show up on a test, a scan, on something?
Now in the hospital, her doctors suggested ECT, which is generally viewed as a last resort for severe depression and other mental health conditions (it does help some patients feel better). Courtney started observing her hallmates, some of whom were already receiving the treatments, searching for clues about what it might do to her.
In her journal, Courtney wrote about a man named Matt who seemed to be improving after ECT. But in another entry, she described a blank-faced patient named Ruby: "I knew right away that she was on ECT. Ruby walks into the bathroom, staring in the mirror, doesn't bother to close the door (so that I've come upon her a couple times unexpectedly) and she just stands there, stagnant. What is she looking for? Trying to recognize something that used to be there? She keeps one hand wrapped around the doorframe, resting on the light switch. Maybe so that if she suddenly and drastically realizes that she's seen enough, she can turn out the light."
When Courtney finally agreed to undergo ECT herself, she says it felt like a "sterile giving up."
"I think it was like, 'I'm desperate and nothing is helping,'" she says now. "I have no hope...there's nothing else out there-so I'll just do what they say.'"
Sexism in the health-care system-in both doctor’s offices and in medical research-is a well-known, persistent problem. Studies have shown that health care providers routinely take women’s complaints of pain less seriously than they do men’s and that women are more likely than men to receive a sedative or psychotropic drug for their aches, while men are treated with pain medication.
But it’s not just pain that isn’t taken seriously. When women show symptoms of hard-to-diagnose medical issues, some doctors use psychiatry as a dumping ground rather than seriously investigate their symptoms. “If a doctor doesn’t fully understand what’s going on, it’s a lot easier to put a label on it and say, ‘This is depression,’ instead of saying, ‘We don’t know,’” explains Carl Erik Fisher, MD, an assistant professor of clinical psychiatry at Columbia University. “Psychiatry then becomes a catchall for ‘women’s’ problems. Particularly if they present with difficult-to-understand complaints, they tend to get dismissed as complainers or as ‘psychosomatic.’”
Until a few decades ago, “female hysteria” was an official diagnosis. And while it may no longer be written in patients’ charts using those words, the idea that medical issues are all in women’s heads is still prevalent. In one recent study, women’s pain was more often categorized as “emotional,” “psychogenic,” and “not real” than men’s.
“Studies in the 90s suggested that as many as 30 to 50 percent of women diagnosed with depression were misdiagnosed,” writes Maya Dusenbery in her book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.
Women of color are especially likely to be disbelieved. A 2016 study that surveyed medical students and medical residents found that a whopping 50 percent of them held “false beliefs about biological differences between blacks and whites,” including that black people have “stronger immune systems.” Additionally, Danielle Ofri, a professor of medicine at New York University, writes that problematic, racist language found in the medical charts of people of color influences their medical care.
Once one doctor disbelieves a patient, it makes others more likely to do the same. Dusenbery says that a psychological disorder listed in a woman’s medical chart “heightens the risk that any other physical symptoms they have in the future will be automatically dismissed as psychogenic.” That’s true, she finds, whether the woman actually has a psychological disorder or was misdiagnosed with one. Either way, it can follow her around and influence the way doctors perceive her for years.
Sometimes patients do have psychiatric issues that prevent doctors from seeing their physical problems. Fisher says that many doctors incorrectly frame psychiatric and physical illnesses as an either or and believe that a symptom is either mental or physical in nature, not both. A patient may have low energy due to depression. But that may only account for a certain percentage of her fatigue-there could also be a physical illness at play.
Yet her doctor might prescribe Wellbutrin and send the patient on her way without looking for other contributing causes, Fisher says. Meaning, she will never fully get better.
Waking up in the hospital after her first ECT treatment, Courtney felt "like her brain had been washed in saline solution." As the general anesthesia wore off, she knew immediately that something wasn't right. There were holes in her memory-entire swaths of her life, vanished from her head (memory loss is a common side effect of ECT). She knew where she was, recognized her parents. She could remember most things from her adolescence, before she got sick. Prom...she had gone to prom. But there were lots of blank spots. Her time at Brown, a haze.
Her vocabulary had also become strangely limited, even childlike. “I have a snapshot in my mind of me sitting at a computer, after ECT, trying to teach myself how to speak English,” Courtney says. “I was going to dictionary sites to relearn my vocabulary-words that I knew before.” In her journal, she wrote: “Words just aren’t coming fast enough to me. I lie in bed this morning rolling my mind over and over trying to get it to find the word 'voyeurism.' I tried everything.”
Her extreme fatigue, however, remained unchanged. And her fever kept spiking intermittently. Still, Courtney submitted to ECT eight more times in the ensuing weeks. This number of treatments is not unusual for patients who are severely depressed-but for Courtney, they didn’t help at all.
At this point she thinks she must have begged the doctors, again, to look beyond depression. Because one ordered a new battery of blood tests that turned up something interesting: elevated levels for Epstein-Barr (EBV), one of the most common human viruses and a cause of mononucleosis.
Many people get the virus in childhood, according to the CDC (Courtney probably first got it as a teenager), after which it goes dormant in the body. She remembers her doctors arguing about whether the finding was even significant, since elevated levels of EBV are common even in people who display no symptoms. But one psychiatrist thought it was worth looking into, and his persistence led to Courtney being diagnosed with myalgic encephalomyelitis, commonly referred to as ME/CFS, which is thought by many doctors to be related to EBV.
A debilitating autoimmune disease that affects multiple systems in the body, ME/CFS can cause up to 60 different symptoms, including extreme fatigue, fever, and foggy brain. Until recently, doctors have paid little attention to it, with some even believing it’s fake (its name was changed from chronic fatigue syndrome to ME/CFS to encourage the medical community not to write it off as baseline exhaustion). ME/CFS affects up to 30 million people worldwide. No surprise that four times as many patients are women than men.
In 2015, the Institute of Medicine published a report on ME/CFS that concluded: “Misconceptions or dismissive attitudes on the part of health-care providers make the path to diagnosis long and frustrating for many patients. Health-care providers should acknowledge ME/CFS as a serious illness that requires timely diagnosis and appropriate care.” (Research by the Open Medicine Foundation indicates that more than 90 percent of people living with the disease are currently undiagnosed, meaning that they, like Courtney, could be being treated for something else entirely.)
More than just ME/CFS, autoimmune diseases in general have been historically dismissed by doctors or categorized as psychological. Multiple sclerosis, for instance, was referred to as "hysterical paralysis." (It was only recognized as an autoimmune disorder in 1996 when MRI machines helped legitimize the disease.) Because women make up more than 75 percent of people who suffer from these conditions, some doctors blame medical sexism for the fact that we still know so little about them. In the 1970s, the FDA recommended that women of childbearing age be banned from medical research (in case they became pregnant during the course of the tests), creating a major information gap around the illnesses that predominantly affect women.
It took Courtney a minute to accept that she finally had an answer-that, after more than six years during which her life had derailed into a hell she didn’t recognize, she’d finally been vindicated: Something was physically wrong with her. She researched ME/CFS on her own before getting on board with the diagnosis. If she felt relief, she doesn't remember it.
Courtney now takes dozens of pills a day, including both prescriptions and supplements to decrease inflammation. One of the medicines that's been vital is naltrexone, a medication used for opioid- and alcohol-use disorders that some doctors use in low doses to help with autoimmune diseases. She’s started to feel more like herself again, with fewer of the fevers and other flu-like symptoms, although she still has serious issues with her memory and with retaining complicated ideas. There are days of exhaustion.
Because of this, going back to school doesn't seem like a realistic option. Instead, she runs her own entertainment-booking business, which allows her to make her own hours and work from home when she needs to.
One of the ironies of her experience is that the ECT treatment that claimed so many of her memories also rubbed numb a lot of her emotions around her ordeal. Today she talks about it matter-of-factly, as if recounting a story that happened to someone else. "I've sort of vaguely thought at times about writing a letter to the hospital where I received ECT," she says. "But it's easier to not feel angry now. I'm on a path to feeling better."
That's not to say she'll soon forget the doctors who doubted her for so long. That memory is one that's seared into her brain.
*Name has been changed.
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