From theguardian.com
By Courtney Maum
Insomnia is not a grievance made by difficult women. It’s a life-threatening condition that often stems from a physical issue many doctors refuse to see
In February, I taught memoir writing at a conference in Mexico where the faculty is traditionally put up with local hosts. Mine was especially communicative in the months leading up to my arrival, going out of his way to indicate affordable rooftop bars, the finest locations to view murals, and general best practices for the city he’d adopted as his own.
So when I told my host that I have chronic insomnia, I felt he’d take me seriously, given how generous he’d been in his emails. “I’ve travelled a lot throughout Mexico,” I wrote him. “And the one thing I can’t deal with as an insomniac is roosters.”
There was a rooster in the vicinity, my host admitted, but it was way off in the distance and shouldn’t be a problem; his home had thick walls and was well insulated against noise.
Colour me surprised when I arrived, a few hours shy of midnight, to the news that the rooster had recently relocated to the tree outside the guest bedroom where I’d be staying for the week. “He starts crowing at 4am,” my host explained, “and he just keeps on going.”
“He’s lucky we’re vegetarians!” joked a visiting friend of his.
I went to bed disheartened and prematurely anxious. In addition to teaching a full load of courses, I had a novel under consideration at several publishing houses, so my week was jammed with high-stakes editorial calls. I can barely sleep with someone breathing next to me, so there wasn’t a chance in hell I’d be able to sleep through a rooster crowing outside my window.
After a sleepless night, I fled the coop on day two, relocating to a poultry-free hotel nearby, which made me feel guilty – the host had been so kind. I was also frustrated, knowing he probably thought I was exaggerating, using the word “insomniac” to stand in for “sensitive”.
When I tell people that I have immense trouble with sleep, what they hear is that I’m difficult, neurotic, a diva with control issues. For nearly 40 years, every doctor I’ve pleaded with has announced that the problem is in my head. That I need to relax, take hot baths, do a lot of yoga. Or, you know, go back and be born a man, because ladies are high-strung.
But last year, at 45, I finally found a doctor who listened to my conviction that there was a physical root to my ailment.
This is the story of how I got through his office door.
As anyone trying to get through the day after a sleepless night will know, mental health is strongly linked to sleep satisfaction – and Americans are doing poorly in both of these departments.
A 2023 poll by the National Sleep Foundation found that “one in four adults who were dissatisfied with their sleep also met probable criteria for a depression diagnosis,” with women and the elderly suffering from insomnia, depression and a reliance on sleeping aids more than any other demographic. Last year, a fresh survey by the American Academy of Sleep Medicine announced that 12% of Americans had been diagnosed with chronic insomnia, the very condition I’m up against.
The message that I was overly sensitive, persistently hormonal and ‘keyed up’ was drilled into me so many times by doctors of both genders
My struggles with disordered sleeping started far younger than the national average. By age nine, I had entered the pattern I’m currently entrenched in – I could fall asleep but couldn’t stay asleep, usually waking up at about 4.30am, exhausted and disgruntled, unable to lure the sandman back.
I don’t think I knew the word “insomnia” at the time, but I knew something had shifted inside me for the worse. My home life was in shambles – my younger brother was suffering frequent, terrifying seizures and the stress of his undiagnosed illness was crumbling my parents’ already fractured marriage. When I complained to my mother about my sleep troubles, she gave me a “join the club” look. She brought home a pack of Sleepytime tea, but it only made me jealous of the narcoleptic brown bear on the packaging who could fall asleep wherever: in a lounger, in a hammock, in a field of chamomile.
The tea was the extent of my mother’s efforts to “deal” with my insomnia. My father doesn’t do emotions, so I stored up my complaints for the doctors I saw annually, giddy with the knowledge that they’d know how to “fix” me. My paediatrician, my dentist, the gynaecologist I started seeing as a teen, even the health counsellor the school sent in for sexual education – I told everyone in a lab coat that I was unable to stay asleep at night, that I was developing debilitating canker sores from sleep loss, that I didn’t understand why I couldn’t stay asleep like my healthy friends.
“It’s because of hormones,” was the common answer. “We see this in good students,” was another observation. “You should play more sports.” Then there was the MVP of answers: “It’s just a woman thing.”
The message that I was overly sensitive, persistently hormonal and “keyed up” was drilled into me so many times by doctors of both genders, I eventually turned my disorder into a point of pride. Throughout my youth and well into my 20s, I hid my broken mental health by presenting a sharp and willing mind to my employers, colleagues, friends. By day as a copywriter, I was known as a fixer, someone who could deliver website copy for a luxury hotel chain on a moment’s notice. At night, I went into author mode – someone able to brightly chat about her latest novel at book signings even though she felt costumed in the body of someone no longer alive.
When I added “mother” to my growing list of responsibilities, the train went off the rails. By the time my daughter turned two, I stopped sleeping completely – even sedatives couldn’t turn off the neon light constantly buzzing in my head. I started shedding weight, developed irritable bowel syndrome, and was too out of it to drive. The canker sores that had always plagued me turned into mouth ulcers so painful I couldn’t speak or eat.
Most pointedly, I couldn’t “show up” and “power through” professionally as I’d been doing for so long. I missed the deadline for my second novel. There were mistakes in all my emails. Squiggles in my sight path. I was hearing voices, seeing things in corners. I’d always been told that my brain was the problem – that I alone was responsible for my inability to sleep. Therefore, I had to eradicate the problem. I started to fantasize about driving off the road in my rural, wooded town. Straight into a tree.
My husband put his foot down. Neither he nor my daughter could continue living with the human shell I had become. Either I got myself into therapy, or we talked divorce.
Cue a montage of fresh intentions. I found a talented therapist and a psychiatrist generous with her scripts. I started anti-depression medication and was prescribed an entire pharmacy aisle of sleeping pills. I went to a nutritionist, dropping a small fortune on new-agey supplements including valerian root and lion’s mane. I started acupuncture, hypnosis, reiki, and I took a lot of baths. I gave up coffee and tried to exercise more even though I was so sleepy, I didn’t register my limbs moving until they already had. I drank less alcohol; I ate my weight in food.
I also did the sleep hygiene thing, becoming even more rigid around the act of sleeping, which frankly made things worse. I bought expensive sheets. I bought expensive pillows. I enrolled in two sleep clinics to test for sleep apnoea; I failed both so was denied the CPap machine that I thought might help me rest.
These efforts – laborious, expensive – lasted nearly 15 years. And then, at 45, a new development occurred: I started snoring so loudly that my husband decamped to the guest room. How could I be snoring if I was barely sleeping?
After nasal strips failed to quell my honking, I posted to Facebook for snoring solutions, and a friend suggested that I see an an ear, nose and throat (ENT) doctor. Doctors and acquaintances have recommended everything under the sun – including the sun itself – for my insomnia, but no one had ever recommended this specific specialty, so I drove to the ENT Institute of Connecticut with something close to hope.
After asking me to perform a series of challenging jaw and tongue exercises, the ENT asked if I’d had braces as a child. Here we go again, I thought, slumping in my chair. “I had braces, yeah. Early, like age nine.” I held on to the information that this is also when my insomnia started and my family fell apart. If I admitted that, the consult would end like all the others – the problem was my brain, the problem was my gender; I needed to chill out.
“You have an anterior nasal valve collapse and upper airway resistance syndrome,” the doctor said instead, holding up a laminated poster of different mouth and throat types. “When you got braces, your jaw wasn’t done growing. Your tongue kept growing, but your jaw’s growth was stunted and now you can’t breathe properly, especially at night where you’re basically choked by your own tongue. This isn’t a mental thing; you have a real, physical problem. You haven’t been breathing properly for over 30 years and no CPap is gonna fix that. I’m recommending you for surgery.”
I cried when I got to my car, but not out of relief. After decades of medical gaslighting, hearing that my problems weren’t invented didn’t feel liberating or validating. I felt robbed of time.
I mourned the years where I could have been more comfortable, happier, healthier and rested; a better writer, better mother, a better friend and human. All those doctors, for all those years, declaring that my canker sores were unfixable and linked only to my menses? In the space of five minutes, my doctor had explained it all: my mouth wasn’t able to properly sanitize itself because I couldn’t breathe right. He also explained why my face turned beet red when I did the slightest amount of exercise (a tendency I’d been bullied for as a middle schooler): I wasn’t getting the oxygen I needed to run around the gym.
I got braces in the 1980s when American orthodontics was excessively focused on cosmetics. Today, there’s more awareness around orthodontics and otorhinolaryngology, countless articles, some podcasts; there’s even a 2024 documentary called Open Wide that explores the teenage rite of passage that is – or was – getting braces young. Accordingly, when the New Hampshire-based writer Sarah Canney was told by a dentist that her eight-year-old son’s overcrowded mouth, constant migraines and sleep troubles would be remedied by orthodontics, she had a tool that wasn’t available to my family: the World Wide Web.
“There’s an unseen trickle-down effect of doing so much to a young mouth,” explains Canney, who researched extensively to find a doctor who wouldn’t force tooth extraction on her child’s overcrowded mouth, because she’d learned this practice can detrimentally affect mouth size, causing considerable problems as the patient ages. She says she went into that first appointment with her guard up, ready to protect and advocate her son, but she didn’t have to. The practice Canney chose takes a holistic approach to dentistry, looking at neck curvature and body alignment before anything else. Canney’s son is in phase two of what is looking like a successful orthodontic program, where the patient’s quality of life is prioritized over having perfect teeth.
The poet Christina Stoddard is the person who originally told me to see an ENT in the comments of my Facebook post, because she was saved from debilitating sleep issues by an ENT herself. For years, Stoddard was getting the recommended amount of sleep but was waking feeling like she hadn’t slept at all. Given that her father has sleep apnoea, she was certain she’d leave her ENT appointment with a prescription for a CPap – a continuous positive airway pressure machine that uses a combination of water and suction to help its user breathe. Instead, Stoddard was recommended for five different surgeries to correct nasal and laryngeal issues that were affecting her ability to breathe correctly, especially lying down.
Stoddard underwent the recommended operations, and though the recovery was gnarly, within a month she said the results were transformative. “I didn’t know what I’d been missing,” she told me on the phone. “I went to sleep. I stayed asleep. I woke up in the morning feeling like I wanted to belt out a Broadway song.”
I had three surgeries for my own breathing issues: a nasal valve repair, a septoplasty and a turbinate reduction, all of which I underwent in May of 2024. Unfortunately, the cartilage graft inserted to prop my nostrils open didn’t take on one side of my nose, so in November of 2024, I went under the knife again for revision surgery.
A lot of things have improved for me since my second operation. The headaches that used to plague my waking hours have completely dissipated, and my canker sores have gone from being a daily burden to a monthly one. My face no longer turns bright red when I exercise and I feel generally calmer, happier and more poised. For months after the second surgery, I was sleeping better than I have in decades, but at the time of writing, I’m experiencing a relapse: I haven’t slept more than four hours a night for three weeks.
Though I’ve finally identified and treated the physical cause of my sleep issues, I now have to go back and course correct my mind. After researching the benefits of cognitive behavioural therapy for insomnia (shorthand, CBT-I), I was given a list of local providers by my therapist, but I’m having a hard time finding a human being to treat me, given that most programs are online and self-paced.
The novelist Lara Prescott is currently enrolled in such a program, the Harvard-designed Stellar Sleep mobile app. Having tried every solution in the book for her lifelong insomnia, she’s sceptical that CBT-I will provide the life-changing breakthrough that she’s desperate for.
“Right now, I’m in a really cranky I-don’t-want-to-do-this mode,” Prescott admits. “Insomnia is such a lonely condition. You’re up and you’re so lonely and you can’t get back to sleep, and all you really want is for doctors to say, hey, let’s drop everything and help this person out. But most of the time, you can’t even get anyone to return your calls.”
While I wait for human CBT-I practitioners to return my own phone calls, I’m trying out new rituals to regulate my circadian rhythm and establish healthier thought patterns around my sleep performance. First thing every morning and last thing every night, I go outside and take in the sights, the sounds, the light. I’m supposed to do this for 20 minutes a sitting. (I don’t.) But even with modest time I give to outdoor meditation, I can see and feel the benefits of choosing to rise and set with the sun and moon, instead of my phone’s screen. I ordered a demonic acupressure mat that I endure nightly while listening to Ayla Nova yoga nidra podcasts. I’m slowly trying to replace my Ambien and Trazodone with edibles and tinctures, but I’m not quite off the pharmaceutical sauce.
Until a full night’s rest comes to me (which won’t be for a while, thanks to perimenopause), I find relief in connecting with people who understand that insomnia is not a grievance made by difficult, whiny women but rather a life-threatening condition that frequently stems from a physical issue many doctors refuse to see.
My complications were identified later in life than I’m comfortable with, but better late than dead. If you’re reading this as a fellow insomniac, I hope you find someone who hears and sees you, too.
Courtney Maum is an author who wrote about her sleep issues and related mental health struggles in her memoir The Year of Horses
