One night, in the summer of 2013, I woke up and couldn't fall back asleep. That in and of itself was not especially shocking — who among us hasn't occasionally found themselves wide awake at 3 a.m., panicked about a job, a relationship, or some socially awkward email they sent three years ago? The shock came when it happened the next night. And the next. Within a few weeks, it was clear that I wasn't just going through a rough patch; I had insomnia, a disorder that even health professionals struggle to fully understand. And that confusion about how to treat insomnia, especially among young women, can make the experience far worse for those who suffer from it.
According to the National Sleep Foundation, insomnia can be caused by anything from nasal allergies to depression to working a job with an inconsistent schedule. Mine was set off by extreme personal stress, but it soon took on a life of its own, outlasting and overtaking the original stress. For the two years following that first experience, I was lucky to get three hours of sleep a night. Though I experienced physical and emotional pain from my lack of sleep, my strongest memory from this period is the pain of feeling like no one understood what I was going through, or knew how to help me.
I wandered through doctor's office after doctor's office, collecting lectures about sleep hygiene or prescriptions for pills that did nothing. I gritted my teeth as well-meaning friends told me they'd had insomnia once, but they'd tried guided meditation and it had cleared everything right up. I felt confused, isolated, and desperate. I was convinced that I was broken, the one person in the history of the world who had forgotten how to sleep. And very little of the medical or personal advice I received did much to shake that belief.
It turns out that I am far from the only young woman to have this experience. Women are more likely than men to have insomnia, with one in four American women displaying some symptoms of the disorder, according to a study from 2011. However, it is often thought of as an older woman's disorder, tied to hormonal issues related to giving birth or beginning menopause. With younger women, there are fewer obvious biological causes, meaning the disorder is more likely psychological in nature (and thus, more difficult for doctors to quickly pinpoint and treat).
While only seven percent of women report seeking treatment for insomnia, those who do can still run into many problems getting effective help. Notably, younger women with insomnia are "underdiagnosed and often go untreated," Ginger Houghton, LMSW, CAADC, a therapist specializing in sleep issues, tells Bustle. In Houghton's experience, many young women who seek treatment for insomnia "feel like doctors assume that they are not taking care of themselves, or get brushed off as complainers."
Blair, 28, started having trouble sleeping when she developed a cough that regularly woke her up in the middle of the night. The problem lasted for months, through numerous misdiagnoses, until an ENT finally discovered a nerve issue causing her condition.
But even with the cough treated, the insomnia persisted; soon, getting effective treatment for it became an enormous struggle. "I've gotten sympathetic ears from professionals," Blair tells Bustle, "but their answers are just variations on the theme of 'sort out your sleep and then we'll be able to see what else might be going on.' Or worse: 'are you exercising?' (yes, goddammit) or 'Have you tried yoga? Have you tried meditation?' I swear to God, the next person who tells me to do yoga is going to get a swift uppercut to the jaw."
Sophie, 29, spent years dealing with insomnia so severe that she sometimes spent 22 hours a day awake at a stretch. She would "walk around like a zombie, losing large chunks of time I couldn't recall because the days blended together," she tells Bustle. "Day to day life with insomnia is unimaginably difficult. Time loses all meaning."
At the recommendation of her doctors, Sophie tried a number of sleep medications, including Ambien and Xanax, although they did not always lead to sleep. Sometimes, they left her awake but blacked out, "wandering around the dorms, sending bizarre text messages to my friends." It took Sophie's doctor two years to realize that her SSRI medication might be the problem (an uncommon side effect for this specific drug); as soon as it left her system, she began to sleep more easily. After two more years, she overcame her sleep anxiety and began to sleep normally on her own again.
How can there be this much misinformation, confusion, and misdiagnosis in the medical community and beyond about insomnia, an affliction that 60 million Americans experience each year? Erin Dykhuizen, LICSW, a clinical social worker who often treats women with insomnia, says that overwork among doctors may be a major factor. "Often, medical professionals are crunched on time and aren’t able to delve into a deep discussion on what is going on in women’s lives that might be underlying the issue," Dykhuizen tells Bustle.
Dr. Matthew Goldenberg, D.O. a clinician at New Vista Behavioral Health, agrees. As he tells Bustle, "Doctors often have limited time in the office appointments to address some of these points, because major and often times life-threatening situations take top priority."
Martin Reed, a certified clinical sleep expert, notes that in addition to time crunches, many medical doctors don't have a deep knowledge of the disorder. "[They're] not familiar with the intricacies of insomnia or treatment options that do not rely on pharmaceuticals," he tells Bustle. As Reed points out, the average four-year medical school curriculum includes less than two hours of instruction on sleep disorders. Reed suggests that this lack of training can lead doctors to recommend ineffective treatments, like sleep hygiene techniques. While sleep hygiene — a term that refers to behaviors like avoiding excessive caffeine and having a relaxing bedtime routine — is healthy, "these techniques have not been proven to cure insomnia by themselves." Ginger Houghton agrees, saying, "sleep hygiene is not enough to change chronic insomnia."
This inability to easily find proper treatment isn't just frustrating and physically difficult; being unable to sleep impacts every part of your life, including your relationships with others. Sophie recalls that at the lowest point of her insomnia, she fell asleep during a college class. "We were watching a documentary and the next thing I knew, the professor was telling me to get out of his classroom. I was not only humiliated in front of my peers, but also devastated by how disrespectful my actions seemed. It was the first time I'd closed my eyes in over 24 hours, and I didn't even remember doing it."
Jennie, 36, has dealt with periods of severe insomnia since she was a teenager, and found that she couldn't talk about her problem without being deluged with unhelpful advice from friends, which made her unhappy and sometimes put stress on the relationship. "Of course, they were well-intentioned in their suggestions," Jennie, whose name has been changed to protect her privacy, tells Bustle. But, she says, "it was especially frustrating when people who knew I was struggling with insomnia would recommend that I try calming visualization techniques or yoga before bed. How was that supposed to prevent my eyes from flying open — and staying that way — daily at 4 a.m.?"
"Not sleeping (or not sleeping well) affects everything because it takes away your baseline functioning," says Blair. "I find myself asking myself (and my therapist) questions like am I genuinely stressed out, or am I just tired? Am I actually depressed, or just tired? ... Basically, the stress compounds in a way that's hard for non-insomniacs to understand: you don't sleep, which frays your physical self, and then you fret about not sleeping, which also makes it harder. It's vicious."
The stress can even lead sufferers to take to dangerous risks. At the peak of my insomnia, I found myself using three or four times the suggested dosages of sleep medicines, because I didn't believe that the correct dosage would work — and because I felt so awful and exhausted, I didn't care about the possible consequences. "The desperation that comes with not being able to sleep is indescribable," says Sophie. "I would have done anything just to rest my eyes for a few hours."
However, all of this doesn't mean that the situation is actually hopeless. There are several techniques that the experts I spoke to recommended for better treatment outcomes. Most notably, nearly all suggested trying cognitive behavioral therapy, which is also recommended by the American Academy of Sleep Medicine and the National Institutes of Health as the first line of treatment, before any medications.
Many people (like me) think of insomnia as an illness of the body, a misfiring of chemicals that must be tamed through medication; this is an idea often furthered by visits to general practitioners, who may offer us a prescription for sleeping pills before suggesting we seek out therapy. But often, says Reed, insomnia is about anxiety; we miss a few nights of sleep due to stress, then "find ourselves paying far more attention to our sleep than we ever did before ... and this leads to stress and even anxiety towards sleep." Cognitive behavioral therapy, says Reed, "helps address the thoughts and behaviors that usually interfere with sleep. Cognitive techniques help change the way you think about sleep to reduce the fear, anxiety, worry and stress associated with sleep."
Cognitive behavioral therapy is not available, accessible to, or effective for everyone, but it's not the only answer. Erin Dykhuizen says the most important step is to "find medical providers who have the time and ability to really listen. Often, this is not a medical doctor, but a psychotherapist who is skilled in assessing stressors and more complex psychological factors, like depression and PTSD."
There is, perhaps, the hardest step: remembering that this isn't permanent. "You never lose your ability to sleep," says Reed. "You just need to find the solution that is right for you." Four years ago, I would have probably laughed at that assessment (then had a meltdown over some burnt pancakes, then fallen asleep for 15 minutes in a supply closet at work). But today, I'm doing better than I could have ever imagined back then. My sleep isn't perfect, but through a combination of talk therapy, psychological medication, and adjustments to my sleeping environment, I'm having more good nights than bad. I'm doing so well, I've almost forgiven all those people who suggested guided meditation. Almost.