Sleep is a biological imperative, and yet it is not prioritized in national healthcare strategies. As the systems are still warming up to take sleep seriously, individuals with sleep disorders suffer in silence and, worse, get dismissed even when their issues are persistently vocalized.
Sarah [pseudonym] is one of the 3 million people suffering from narcolepsy worldwide who face the burden of an unequipped healthcare system. While society and healthcare systems do not consider sleep every moment, Sarah does.
I have narcolepsy, so I need to think about sleep every day. Sleep is required, but it’s often not prioritized. I have a love-hate relationship with sleep; it’s something I crave and need more than most people, but the sleepiness can also be a frustrating burden to my day-to-day life.
A LOVE-HATE RELATIONSHIP WITH SLEEP
Daytime drowsiness and napping in public places have always been a part of her life. Sarah would fall asleep in class at school, on the bus after school, on the bus before school, as a passenger in a car, in hotel lobbies. High school was rough for her. “I was fighting to stay awake during my “sleep attacks”. I was not absorbing anything in class, and I experienced a lot of brain fog. It would take all my energy to simply keep my eyes open, and I was often unsuccessful at staying awake, which made me feel guilty,” said Sarah.
Her ability to nap anywhere seemed like a superpower for some around her. “I have been told, ‘Wow, I wish I could nap as easily as you.’ While people probably mean well, this can be hurtful.” For Sarah, napping is a medical need, “it is not a fun, relaxing activity for me. Naps are refreshing, but they also take me away from work and social interactions. It interrupts my day, and it’s very frustrating.”
As a kid, Sarah had intense periods of sleepiness and a lot of energy by day, and was a “terrible sleeper” by night. She did not have insomnia, but “I had a very light sleep my whole life. I would fall asleep as soon as my head hit the pillow, but I would wake up over a dozen times each night for a couple of minutes. I had vivid dreams and would not feel refreshed in the morning. I thought this was normal until I received my diagnosis,” said Sarah.
Her parents, teachers, and doctors thought that she was just a sleepy kid until about the time she turned seven.
A DOCTOR’S PRESCRIPTION FOR UNNECESSARY TESTS
By the time Sarah was about seven, her parents realized that napping every day was unusual for a child at that age. Children should ideally outgrow habitual napping by approximately five years old. After her parents shared their concerns with her doctor repeatedly, he got Sarah tested for anemia, iron deficiency, hypothyroidism, mononucleosis via blood tests, and for Celiac disease via biopsy, all of which came back negative.
“There were a lot of unnecessary investigations, but he never referred me to a sleep test.” Being a happy 7-year-old, depression was not considered a likely cause of Sarah’s hypersomnia. “However, many teenagers with narcolepsy are told that they are depressed and hence they are sleepy, which delays their diagnosis,” said Sarah. “Many physicians do not consider that the hypersomnia may have preceded the depression.”
A couple of years later, while Sarah was laughing with her friends in the library, “suddenly my jaw dropped, and my speech became slurred. My knees felt weak, and I felt like I was going to collapse. This started happening more often when I laughed: my eyes would close, my jaw would go slack, and I would lose muscle tone, and my mum, who regrets it now, thought that I was doing it on purpose to get attention.”
At the time, she shrugged off the incidents as having a weird quirk, like how some people snort while laughing.
Thankfully, Sarah’s mother, not a doctor, pushed for answers and came across narcolepsy on the internet, which explained Sarah’s symptoms. It took a lot of advocacy and convincing from Sarah’s mother, but eventually, their doctor agreed to refer Sarah to a sleep study after seven more years.
Sarah underwent polysomnography, an overnight sleep test, and a Multiple Sleep Latency Test (MSLT), which tests how quickly one can fall asleep in the day and how quickly one enters Rapid-Eye Movement sleep. Sarah said, “My sleep latency at night was under two minutes. My REM latency was under five minutes, and on the MSLT, two out of four times I entered REM stage sleep right away, which is called a sudden-onset REM.” For context, people without a sleep disorder have an average sleep latency of 10 minutes on this test,
Sarah was fourteen when she got diagnosed with narcolepsy with cataplexy – a sudden, uncontrollable loss of muscle tone often triggered by strong emotions. “Everything made sense now.” She realized her strange reaction to laughter was cataplexy.
Since narcolepsy symptoms are not always visible, individuals’ complaints may be perceived as “dramatic or exaggerating”. Sarah said, “Everyone is always talking about being tired, but how come everyone else could stay awake, while I was falling asleep? If I don’t fall asleep during the 15-minute appointment with the doctor, how can I prove to him that it is a real issue? And if you are high functioning” – as Sarah was – “doctors don’t take your symptoms as seriously.”
Sarah was the Valedictorian in her middle school; she always had top grades and eventually went on to pursue degrees in science and medicine. Sarah was extremely good at compensating and adapting, but “it doesn’t mean I was not suffering.”
My family doctor dismissed our concerns for years. All those years of frustration could have been avoided if he had considered a primary sleep disorder earlier on. We didn’t feel heard at all.
Lack of awareness amongst physicians and health care professionals is a systemic issue which needs fixing, but listening to patients’ persistent complaints with empathy and giving importance to lived experience is imperative.
TO DISCLOSE OR NOT TO DISCLOSE
In medical school and during residency, Sarah had a decision to make: to disclose or not to disclose narcolepsy. Due to societal and cultural beliefs about sleep and sleep disorders, Sarah was worried about jeopardizing herself after coming out.
“It is a double-edged sword: if I don’t disclose my diagnosis and someone sees me napping, they might think I am uninterested or irresponsible. In reality, napping for a few minutes while working on my patient notes does not affect my work or patient safety. But it “looks” weird and can be perceived as unprofessional. If I do disclose it, people will understand my need to nap, but I risk narcolepsy-associated stigma, stereotypes, and my abilities are often doubted, despite my track record of success.”
Sarah decided to share her diagnosis in medical school, and consequently, she had some negative experiences.
Sarah recalled her experience from when she shadowed a child psychiatrist for a routine follow-up with a child and their mother. At this time, she was not on medication that worked very well, and to keep her from involuntarily dozing off, Sarah would cope by snacking or fidgeting, which kept her more alert.
“During the consultation, I ate a granola bar because I didn’t want to fall asleep or leave the room. After the visit, the physician, who knew I had narcolepsy, said, ‘How dare you snack during a patient encounter? It is not a social hangout!’” Sarah was told that having a snack if you were pregnant or have diabetes would be a medically justifiable reason, which implied that narcolepsy was not a valid medical condition. Infuriated during our chat, Sarah continued, “If I don’t successfully hide my narcolepsy at all times, it’s seen as unprofessional, and it’s my fault. And if I do things to manage it, those behaviours are also considered unprofessional. I can’t win.”
Sarah re-lived these moments during our conversation. She had an unpleasant experience with another physician, as she had asked for a residency reference letter. “She had praised my work and knowledge multiple times throughout the rotation. But when I asked for a letter, she said, ‘Tell me first how you will manage residency with narcolepsy.’ Her concerns about how I would manage in residency were not related to my abilities she had witnessed but were based on her preconceived notions of what narcolepsy is like.”
Such an experience can seriously discourage someone from pursuing their dreams and believing in their capabilities, especially if these experiences happen to children and adolescents, who are still developing their identity and self-esteem.
“When I reported these experiences to my program, they said, ‘Well, there are some individuals from ethnic minorities in the class who probably get inappropriate comments from staff physicians all the time. It took 30-40 years to beat the stigma around epilepsy, so…’” Sarah continued in disbelief, “I wanted to bring this to their attention to protect other students with chronic health conditions from harmful attitudes. Instead, they made me feel like I was being oversensitive and dramatic.”
I wanted to bring this to their attention to protect other students with chronic health conditions from harmful attitudes. Instead, they made me feel like I was being oversensitive and dramatic.
Medical school, where unhealthy lifestyles are often praised and equated to your ability to excel, was not very amicable about Sarah’s medical need for daily naps. “People can be weird about sleeping in public. I sometimes compare it to women breastfeeding in public; it might make some people uncomfortable, but women should be allowed to feed their babies when they need to be fed. I can’t always control when I need to sleep, and if I worried constantly about how it made other people feel, I would be drowning in anxiety.”
Sarah recalls her experience when she helped organize a medical conference at a medical institution. In the downtime during the conference, Sarah took a nap on a comfortable bench outside the conference room. “My colleagues, who knew I had narcolepsy, woke me up and said, ‘Some officials said that you cannot sleep here because it looks bad, even after we told them you have narcolepsy.’”
“Looks bad” was a justifiable reason to deny someone’s biological need in a medical institute. After asking if there was another place she could nap, given her sleep disorder, Sarah was offered uncomfortable chairs in the lobby.
COMMUNITY SUPPORT
After many years of handling her narcolepsy on her own, and with the support of family and friends, Sarah discovered Wake Up Narcolepsy (WUN). Through this community, Sarah felt supported, validated, and relieved. “It lifted a burden that I didn’t know I was carrying. I got great advice regarding self-advocacy and medications. People often questioned how I could be a physician if I had narcolepsy. Through WUN, I felt validated that there are other people in demanding healthcare professions who are also living with narcolepsy.”
Sarah was prescribed stimulants for narcolepsy since she was sixteen years old. “I still felt sleepy but also energetic. I thought this was how it would be. I hadn’t had a good night’s sleep since I was five or six years old. My idea of “fine” was skewed. I thought falling asleep standing up occasionally was fine. I was used to tolerating the symptoms.”
From the suggestion of her friends at WUN, Sarah started taking Xyrem and then Xywav. “I suggested Xyrem to my sleep doctor, and it has been life-changing. I feel refreshed and rejuvenated when I wake up in the morning – for the first time in my life since early childhood! I only nap once or twice a day, compared to up to ten times a day before Xyrem.”
What’s more is that Sarah now has a medical note indicating that she is fit to drive. She passed her knowledge test and received her learner’s license and is planning on completing her road test in the next few months.
I never thought I would be able to drive. Before Xyrem, it would not have been safe or feasible for me. I am excited about the freedom and independence that having a driver’s license will offer.
A NEED FOR CHANGE
Sarah’s story highlights the pressing need for change across healthcare, policy, and society for people living with narcolepsy.
- Diagnosis of pediatric sleep disorders: Pediatric-onset sleep disorders could be suspected when children have poor academic performance, learning difficulties, or behavioural problems. However, Sarah’s story teaches us that high-functioning children and adolescents, like herself, with persistent sleep complaints might warrant testing for sleep disorders. Early diagnoses can be made possible if those in contact with children are also taught to notice telling signs, such as teachers, parents, coaches, family doctors, and pediatricians. Perhaps, a consistently sleepy kid is not just “lazy”.
- Consider sleep in all health and well-being: Sleep should be included in all health policies.
Sarah said, “When we talk about health and wellness, we need to talk about sleep. We talk about exercise, smoking, alcohol, diet, but we do not talk enough about sleep. Driving when sleep deprived can be just as dangerous as driving under the influence of alcohol, but people do not often take sleep deprivation and fatigue as seriously.” - Beat stigma and stereotypes: Beating stigma is important not just for people outside of the medical field but also for medical professionals. Moreover, mischaracterizing narcolepsy and using it as a source of ridicule is sadly popular in media and movies even in 2025! Sarah raises a powerful point: “In the new Snow White movie, the dwarf Sleepy has narcolepsy with cataplexy, and yet, his sleepiness is still used as the butt of the joke throughout the movie. But they did not give Sneezy a diagnosis of seasonal allergies. Imagine if movies made jokes about epilepsy, inflammatory bowel disease, or cancer.” This is a food for thought!
- Education and awareness for doctors and the public: “I was alarmed about the lack of sleep education in medical school. They need basic education about sleep.” During medical school, Sarah designed a lecture that outlined an approach to the patient presenting with a complaint of sleepiness or fatigue. “We discussed what assessments to do and which questions to ask, taking an accurate sleep history, developing a list of possible diagnoses, and explaining the difference between fatigue and sleepiness.” This should be a routine in medical schools.
- Cost coverage: Some medication costs should be covered. Sarah said, “I pay over 100$ every 90 days for narcolepsy medications, which is a lot of money for anyone, especially when you are a student.”
Sarah’s story is a reminder that sleep is essential, and it’s time we started treating it that way.
