People struggling to sleep tell us how COVID-19 has exacerbated the problem or disrupted their path to healing
Tom Alexander used to sleep just fine before the COVID-19 pandemic. A year ago, the lockdown set in motion events that would lead to a struggle with insomnia. As with so many people, the pandemic introduced new stresses for the film industry executive. But it had a more significant impact on Alexander’s personal life.
“My relationship with my girlfriend started to disintegrate and physical and mental health became difficult,” says Alexander.
Out of respect for her family and privacy, Alexander won’t name his girlfriend, who died last year from heart failure. Before that tragedy, the pandemic exacerbated her mental health issues and their already fraught and difficult relationship. She had a history of sleep issues. Mood disorders and insomnia often go hand-in-hand, and the pandemic heightened her anxieties.
“On the best days she would be a half-conscious lump on the couch,” says Alexander. His teenage daughter moved out during this challenging period to stay with her mom full time. Several weeks later, Alexander’s girlfriend passed. And only a month after that, his daughter was dealt a second tragedy: her friend committed suicide.
“This is the stuff that keeps me up at night,” says Alexander, describing feelings of guilt and depression, and the five to six hours of erratic and inconsistent sleep he gets on the best nights.
“I’m concerned for my daughter, who is struggling with the one-two punch of two people close to her dying very suddenly, tragically and in close proximity. I’ve still got the lingering anxiety over the pandemic and my industry. I still can’t sleep in the middle of the bed. I still imagine what it’s like when the person’s here.
“It’s been tough to just get used to being alone.”
Alexander is the only one of several people NOW spoke to who only started struggling with insomnia during the pandemic. The rest have been living with it for years. For them, COVID-19 is a pandemic on top of a sleeplessness epidemic.
Doctors are currently studying how the COVID-19 pandemic affects people’s sleep. While the research is premature, early results indicate that some people are getting better rest – since there’s less demand to be places – while others are restless as their routines are disrupted. Most people who spoke to NOW say the COVID-19 pandemic has aggravated a struggle with sleep deprivation they’ve been living with for years, if not decades.
They describe what it’s like to be sleepless during and before COVID-19. They map out their paths to healing with endless remedies that often offer only temporary reprieve. They describe mental health struggles that come with sleep deprivation, and they consider the privilege it takes to sleep easy or seek help.
“It will take time,” says Alexander, describing what it takes to heal.
Social worker and therapist Jenna Dolly sees a lot of people with sleep issues, and has observed an exacerbation during COVID-19.
“We find that sleep issues are tied to other things that are going on in life,” says Dolly, listing the factors in sleep deprivation that COVID-19 makes worse: “high stress, anxiety, some depressive mood. We’re at home a lot. We’re looking at our devices a lot more and having more access to news. And the news lately has been very troubling. People are finding it hard to turn off at the end of the day.”
In May 2020, two months into the pandemic, Stanford University doctors Norah Simpson and Rachel Manber published an article in the journal Behavioural Sleep Medicine describing observations from treating patients at a sleep clinic virtually during COVID-19. The article, titled Treating Insomnia During The COVID-19 Pandemic, observes improved sleep among people enjoying the greater flexibility in their days, but diminished improvements in others who have little structure.
“There are some people who find their sleep is better,” says Adit Margaliot, a neurologist and sleep specialist in Toronto. “That’s because being able to work from home, not commuting… there are some who are less stressed. They are able to get a better night’s sleep because they don’t have to get up abnormally early.
“What’s not uncommon is now people don’t have a structured scheduled day. So their bed time and their rise time is all over the place. Once you start getting too fluid with that, if you don’t have a set time [to go to sleep], your brain doesn’t do very well with that. It needs consistency.”
At Ryerson University’s Sleep and Depression lab, PhD student Nicole Carmona studies sleep behaviour among young adults. Using an app that tracks how participants sleep, Carmona was able to compare data from the months before COVID-19 and the fall semester during the pandemic.
“What we know is that the people who used the app during COVID lockdown spent more time in bed,” says Carmona. “They were also awake for a longer period in the middle of the night than people who used the app before COVID.”
Carmona says they tracked less variable sleep schedules, which was a positive sign. But, she explains, being in bed longer doesn’t mean more or better sleep. It can actually lead people to condition their bodies to disassociate the bed from sleep.
“It’s like you’re trying to stretch pizza dough into a pan that’s way too big,” says Carmona. “You end up with holes. That’s what we’re seeing with our data collection during COVID lockdowns. People are spending more time in bed and as a result, they’re also awake for longer periods in the middle of the night.”
Carmona also explains that anxiety and stress, whether due to health or financial concerns, increases our arousal systems, essentially activating our fight-or-flight instincts. To elaborate why that matters for the way we sleep, she uses the analogy of trying to nap in a cave with a bear.
“Our systems aren’t sophisticated enough to know the difference between anxiety and a bear,” says Carmona. “We internally respond the same way and that jacks our arousal system up and prepares us for essentially fight or flight. Now, the bear has turned into stuff that is mostly occurring within our own heads: worrying about the future, worrying about health, worrying about going back to work.”
“All of the monotonous daily tasks are now sometimes life threatening,” says film programmer Alicia Fletcher. She lists getting groceries, going to the doctor’s office or simply taking the TTC as daily activities that people now lose sleep over, since they all put you at risk of catching a virus and passing it on to someone who can die. “Someone spat on me on the TTC a few weeks ago. It happens. I’m sure I’ve been spat on before and not even thought about it. But in the pandemic, you’re like ‘fuck.’ You’re put in these situations where everything has become very stressful.”
Fletcher is one the people we spoke with who have lived with sleep deprivation for years and found the problem worsened during COVID-19.
Jason Bennet, who works in insurance and fashion, was hit hard in the past year. He lost three aunts to COVID-19 and another family friend who died in his sleep. Bennet started to experience chest pains soon after, which exacerbated sleep issues he’s been having since 2003, when his mother died.
“I’ve been up since yesterday morning at five,” Bennet writes in a text message he sends to me hours after we speak. “And I’m still awake at 2:22 am.”
Online radio host Barbara Goslawski has endured a gruelling 20-year struggle with insomnia. She started getting anxiety attacks during the pandemic and became wary of even trying to get sleep. “I started realizing that I was afraid to go to sleep,” says Goslawski, who says she later developed night terrors.
The pandemic interrupted the efforts Fletcher made to heal. Before the pandemic, she was finding that getting exercise in the morning or taking an hour-long walk to the office to expend energy early in the day was helping. But working from home disrupted that routine, especially during the winter months.
Fletcher also says the pandemic exacerbated what she calls “sleep deprivation bingo” – when you lay in bed unable to sleep and your mind dreamily wanders to events that happened months, years or decades ago. Conflicts with friends, family and exes become much clearer because with few new social interactions your mind can explore – or dwell.
“Fifteen minutes spent thinking about how you were right that one time; 20 minutes spent thinking about how that ex-wronged you; 20 minutes thinking about how you’re no good. That’s basically what I do when I can’t sleep.”
Not everybody who is struggling with insomnia is affected by the pandemic. For Thas Shanmugaratnam, who gets four to five hours of sleep on his best nights, COVID-19 hasn’t made a difference. The trucking industry dispatcher has lived with insomnia for 15 years, ever since his brother and then his father died in close succession.
“I’ll be sitting on a couch watching television and I’ll be exhausted,” says Shanmugaratnam, describing his nights. “My wife will tell me to go to bed because there are tears rolling out of my eyes when I’m yawning. But then I go lie down and my brain is wide awake.”
As with most of the people we spoke to, doctors sent Shanmugaratnam to a sleep study clinic. People with insomnia are often tested for sleep apnea by getting wired up so technicians can measure how they sleep. But Shanmugaratnam couldn’t fall asleep during the study, so the doctors were left without a reading.
He has since tried meditating, drinking camomile tea or warm milk before bed and counting sheep. He’s even tried Imovane, a common prescription sleep medication, which he put off because it leaves you groggy with a foul taste in your mouth. Imovane is the backup, not the plan, since repeated use means you will develop tolerance.
“I’ve just come to terms with it,” says Shanmugaratnam, resigned to live with insomnia. “During the day, I’m not walking around yawning and exhausted. My body is just used to it now.”
He’s not alone.
The sleeplessness epidemic keeps getting bigger in an era where everyone is constantly plugged in to their phones or computers.
Blue light from screens keep us aroused. And according to Margaliot, our attachment to our phones is affecting our brains. We constantly await emails, messages or notifications that trigger a dopamine response. Even checking our notifications before bed is “arousing neurotransmitters.”
“We’re always in a hyper-arousal state,” says Margaliot, “rather than going into our parasympathetic functions, which is rest and digest, basically telling your brain it’s okay to go to sleep and you don’t have to be constantly on the alert.”
Our wired state of minds and emotional triggers are just a couple of potential causes in a myriad that could lead to insomnia. You can find Facebook support groups, message boards and blogs where people go down the rabbit-hole of reading up on how high-histamine diets, hormonal imbalances or low iron, acid and vitamin D levels can affect sleep. They also trade tips and remedies, hoping to find solutions.
Everyone we spoke to is wrestling with various treatments, therapies or routine changes. Some work with therapists like Dolly, sleep doctors like Margaliot and even naturopaths, since diet and physical health issues can also lead to insomnia.
For Janice Lal, a parent trainer in autism services, the pandemic interrupted her routines to improve her sleep and made her insomnia more chronic.
“It just makes it so much more difficult to manage,” says Lal, who has been struggling with insomnia for four years. She follows doctor-recommended treatments and “sleep hygiene” practices, like using a weighted blanket, keeping her sleeping environment cool and making sure she avoids blue light from phones or TV before bed. She also makes sure she gets enough sunlight during the day to keep her circadian rhythm (our internal biological clock) regulated.
“Having too variable a sleep schedule could cause things like jet lag without travelling,” says Carmona, explaining why maintaining your circadian rhythm with structure is essential, especially in the long term.
Lal and Bennet also try CBD oil and melatonin. Bennet has also explored muscle relaxers, valerian root, sleep time tea and cognitive behavioural therapy.
The meditation and cognitive behavioural therapy route involves talking to a therapist and learning how to train your mind to see sleep as a reward rather than a requirement to function.
Fletcher adds meditation apps and podcasts like Sleep With Me to the list of remedies that may help, but they don’t work for everyone. The problem for her, however, is not falling asleep but staying asleep. She has tried treating that by getting out of bed to do a puzzle, since performing a menial task or activity is a doctor-recommended way to reset and avoid getting used to lying awake in bed.
“You talk to people about this, but you’ve probably tried 99 per cent of their recommendations,” says Fletcher.
Insomnia can be the result of poor nutrition and mental health issues, but it can also be the cause of those problems.
According to Margaliot, insomnia can lead to heart arrhythmia failure, dementia, restless leg syndrome, narcolepsy, vivid dreaming, sleep walking, sleep eating, night terrors and REM sleep behaviour disorder, which involves someone acting out a violent dream by punching or kicking in bed, which can injure the people around them.
“In a significant number of patients, the sleep difficulties come first,” says Margaliot. “That is a very important thing to try to fix along with treating the mood problem, whether its depression or anxiety.”
Personal traumas and mental health are factors in Goslawski’s 20-year struggle with sleep. But instead of meaningful treatment, she has had psychiatrists prescribe eight different medications, mixing small doses of Epival, which treats bipolar disorder, with the sleeping pill Imovane and Ritalin to help her pay attention at her day job. She describes it as a drug cocktail that left her unable to keep up with her day job because she was left in a fog for a couple of years.
“The most important thing is to function as a human and function with my husband,” says Goslawski, her sentences fragmented but her emotions bare as she shares a struggle that so many who suffer from chronic insomnia know. Sleep deprivation can feel like you are being denied the ability to just live.
“Improving your sleep is an act of self-care,” says Fletcher, adding that trying to treat insomnia takes a similar motivation and initiative to seeing a therapist or jumping on an exercise bike for the first time, resolving for a significant lifestyle change. “Trying to fix your sleep habits falls into that category where sometimes it’s just easier to go with the norm because it’s safe and I’m used to it.”
Like Shanmugaratnam, Fletcher is tempted to just live with it, especially since she’s a highly functional insomniac. On the rare occasion that she does get a good night’s sleep, it disrupts her ability to work.
“My body doesn’t really know what to do with that and I’m destroyed the next day,” says Fletcher. She often makes television appearances and says she performs better without sleep because her brain has learned to function that way. “I’m worried if I’ve slept too much the night before I’m going to be on camera, because my body freaks out. That’s where I’m just like, ‘God, how do you even begin to undo that and be functional?’”
Despite her predicament, Fletcher also notes she has a certain amount of privilege that affords her the ability to work on her sleep.
“I’m employed,” she say. “I’m housed.”
Theatre actor Gugun Deep Singh echoes that sentiment. He has struggled to get his sleep schedule in order after decades of being a night owl due to occupation and lifestyle. Being able to focus on his sleep through cognitive behaviour therapy and meditation led to a positive shift in his mental health. But that has also made him consider the people who don’t have that room for improvement.
“There’s a lot of talk about what’s going on in the city with the homeless population and caring for those in a more unfortunate state right now,” says Singh. “Just having a place where you’re safe and secure – where you can rest – that alone is a massive advantage.”
When it comes to finding sleep, privilege can be determined by where you live – but also the skin you live in.
A 2013 Harvard study called Sleep And Its Relationship To Racial And Ethnic Disparities In Cardiovascular Disease (CVD), explores reasons as to why Black people in the U.S. are 43 per cent more likely to develop hypertension, 95 per cent more likely to have a stroke and 30 per cent more likely to die from CVD than non-hispanic white people. That study homed in on sleep disorders and insomnia as a contributing factor to CVD. The study acknowledged the need for more research, but also reported more cases of insomnia among Black people.
The study found the factors that could contribute to sleep disorders are pervasive for people of colour, like neighbourhood disadvantages, and psychosocial stressors like experiencing racism or discrimination.
Dolly concurs with those observations, saying that sleep deprivation can come from “having to constantly navigate spaces for racism that’s happening all day, every day.”
The Harvard report also pointed to occupational stressors like odd working hours or poor labour conditions. People of colour often work nights or variable shifts, unable to maintain a structured schedule and use sunlight to set their circadian rhythm.
“A lot of racialized people have multiple jobs,” adds Dolly. “You’re going from one thing to another thing all the time. So sometimes sleep isn’t a priority.”
According to the Harvard report, stressors are prevalent among marginalized groups, but access to treatment is not. In the same way the COVID-19 pandemic disproportionately affects marginalized communities, so too does the sleeplessness epidemic.
As with many issues, the pandemic has sharpened our focus on sleep issues.
“People have started paying more attention to their sleep,” says Carmona, discussing the effect the COVID-19 pandemic has had. “I think a lot of people have become more fixated on their sleep problems. But that’s more of an opinion rather than an empirical statement.”
Carmona adds that Ryerson’s Sleep and Depression Lab is recruiting for clinical trials and offering free cognitive behavioural therapy to participants struggling with sleep and willing to help the lab find solutions.
There’s light at the end of the tunnel when it comes to the COVID-19 pandemic thanks to vaccines. For now, the sleeplessness epidemic still has us tossing and turning in the dark.
Listen to Radheyan Simonpillai and Alicia Fletcher discuss sleep disorders with Norm Wilner on the latest episode of the NOW What podcast, available on Apple Podcasts or Spotify or playable directly below:
NOW What is a twice-weekly podcast that explores the ways Torontonians are coping with life in the time of coronavirus. New episodes are available Tuesdays and Fridays.