Frances Koziar

Secrets and Sleep

I have a sleep condition called idiopathic hypersomnia. But let’s not talk about it.

I didn’t know the name myself until a few years ago. Before that, I just told people that I needed more sleep than they did. That went over well.

“Are you sure?” a co-worker asked once.

“Maybe you’re just getting too much sleep,” more than one suggested.

“Maybe you just need to try harder to cut back on sleep, and you’ll get used to it.” That one hurt.

Or my favourite: “You’re getting too much sleep,” stated with such confidence that I had to walk away.

I’m a long sleeper: someone cursed with needing 14 hours of sleep a night, rather than the seven and a half average, or five hours for short sleepers. I also get tired during the day, particularly when I try to remember information and especially when I read it. To use the most general term, I have hypersomnia.

Having hypersomnia means that you experience “excessive daytime sleepiness” even when you get enough sleep, or you need more sleep at night. Usually it’s a symptom of another condition, like sleep apnea or an iron deficiency. That’s secondary hypersomnia. Primary hypersomnia is a thing in and of itself; its most common form is narcolepsy. Kleine-Levin syndrome is a cyclical variant in which you only have hypersomnia for weeks or months at a time, while idiopathic is the grab-bag remainder category. The meaning of idiopathic? Unknown cause.

I’m not sure when my hypersomniac symptoms started, or if it ever really started but was just always there. I remember realizing, while at summer camp at age ten, that every time I slept for eight hours for more than a couple of days in a row I would catch a cold, but I don’t recall dwelling on that being abnormal or bad. Maybe no one had told me yet how much sleep most people needed.

By high school though, I was aware that I went to bed earlier than other people. Yet somehow I still wasn’t really comparing myself to others. The only people for whom I always knew when they went to bed were my parents and, like everyone else, they were always sleep deprived.

But by university I knew that I was different. I needed 10 ½ hours of sleep each night. It had increased since high school, and between the beginning of university and the end it increased by yet another hour. You can’t ignore something like that, no matter how hard you try. And I did try.

“Come on, don’t be a party-pooper. You can stay up once in a while.”

It was a summer during university. I was living with a group of fellow park rangers in a cabin off the Trans-Canada highway. My co-worker waited impatiently. I hesitated at the thought of the 7 a.m. wake up for work the next day, but I gave in.

“All right.”

It worked that night. We went out for drinks. I managed to wake up in the morning. But they kept going out and I kept accepting, and I couldn’t live on borrowed time.

“So we need three-and-a-half-foot sections,” I mused aloud, while working on building a bridge with another ranger.

“It’s a twelve footer…”

I paused. Normally I would have known the answer and the remainder without even thinking, but that time I had to ask. “How many can we fit?”

They still didn’t believe that I was extremely sleep deprived on nine hours of sleep. I guess that made less sense to them than the idea that I was normally dense and irritable.

I remember lying awake, hearing the loud voices and music of a party outside my door, probably at the embarrassing hour of nine or ten. I remember trying not to cry because I had tried, like that one co-worker suggested. I had tried to deny my condition, but I’d failed.

Condition. I hated that word, but it was better than disorder.

It’s a word that was handed to me in mid-university, when I finally decided to get tested. I met someone with an iron deficiency who would forget to take her supplements and fall asleep as I did, and for the first time I felt hope. But hope can be a dangerous thing.

I went to a doctor and asked for a blood test, naïvely confident that I had figured out my problem. Low levels of iron, thyroid hormone, and B12 all cause hypersomnia, but I had normal levels for all three. I could have stopped then, but I had to know for sure that there was nothing I could do. I went in for a sleep study.

The woman at the sleep study clinic stuck gooey electrodes to my head to measure my brain waves and plugged the cables into a blocky device that was laid on my pillow. They put a tube in my nose to measure my breathing, an annoying pulse reader on my finger, and patches on my chest to record my heart rate. They had an infrared camera in the darkness, measuring my movements.

And they woke me up at 6am.

I tried to reason my way out of the distress I felt upon waking – a distress that almost always seems to come from having my sleep disturbed by someone who doesn’t understand – and tried not to get angry at the woman who woke me up, but I still went home and slept another four hours.

They found two minor abnormalities - a minor increase in rapid eye movement (REM) sleep, and a higher than usual number of night-time awakenings, despite that I was unaware of the latter and considered myself a very heavy sleeper. It was years before I learned that these minor – and at the time unexplained – symptoms were an impact of past psychological trauma (PTSD).

REM sleep involves the paralysis of your body but the movement of your eyes, and it’s when all of your wildest dreams happen. It’s important for consolidating new information and for restoring your mental and emotional health, but technically it’s a very light form of sleep, and to feel rested, you need a balance of REM and deep sleep. Increased REM sleep is a red flag for narcolepsy, since narcoleptics go quickly and abnormally into REM sleep leaving them exhausted after a full night’s sleep.

So I was booked for a multiple sleep latency test (MSLT) to check for narcolepsy. An MSLT is what I call a nap test. It involves staying in a sleep clinic all day and attempting to have four naps. They record whether you fall asleep and, if you do, how long it takes. They watch for trademarks of narcolepsy – that you fall asleep quickly and reach REM sleep very early. They wake you up quickly. My test results were normal.

“So the good news,” said my sleep specialist afterward, “is that you’re perfectly healthy.”  He paused.

I could fill in the other half. The bad news was that there was nothing I could do about my condition. I had a name for it now, at least, which I could brandish in front of the non-believers. It was a small consolation prize, but I took it.

The sleep specialist was confused by my case; he clearly didn’t expect to have nothing to say to me. Years later, my next sleep specialist looked even more confused. Time and time again, it seemed, I was either met with confusion, dismissal, or both.

The doctor who referred me for my first sleep study had heard of hypersomnia – the symptom at least, if not the condition – but she had dismissed it as a mild health problem.

“I can refer you to a sleep clinic,” she had explained to me at the beginning, “to try to figure out why you have daytime sleepiness.”

“It’s not really that I’m tired during the day,” I explained to her. “Or I am if I don’t get enough sleep, but I just need eleven hours of sleep.”

It wasn’t entirely true, but it took me years to realize how much more tired regular activities made me than other people in a society filled with sleep-deprived people.

My doctor turned her head to looked at me, fingers poised over her keyboard. “It wouldn’t be a problem if you only need a few more hours of sleep,” she said. “It’s only if that’s still not enough and it causes problems during your day.”

So I agreed to her terms and complained of daytime sleepiness, and was granted a referral for the sleep study. I would argue with her now though. Even if I were wide awake at every moment when I’m not sleeping, having so much less time every week than everyone else (twenty-five hours then, forty now) is absolutely a problem. It affects every moment of my life.

After my informal diagnosis – confirmed years later by a second specialist –  more people believed me, but many still didn’t. My father was one of those people. If I returned to my parents’ house and slept past 8:30 a.m. when he woke up, I was lazy. If I went to bed early, I needed to lighten up. So I learned that the best thing to do was to go to bed and wake up at respectable, hard-working hours and then nap in the afternoon. To nap in secret, that is.

The MSLT was the first time I had napped as an adult, and it opened up new possibilities for me. Most Westerners follow a monophasic sleep schedule where you sleep only once a day without a nap or siesta, but in the non-Western world that pattern is actually quite rare.

There was a study done in the 1990s by Thomas Wehr where a group of adults was put into darkness for 14 hour nights – something that would’ve been a natural scenario before the invention of artificial lights. At first, they got much more than eight hours of sleep because they were working off their “sleep debt,” or collective sleep deprivation. Soon, however, they developed a biphasic schedule where they would sleep for four hours, wake for one or two, and then sleep again for another four hours.

I began reading about people who live off of naps, sleeping for a couple hours a few times each day. The more I learned about different sleep patterns, the more sticking to a monophasic schedule – particularly when I needed more than eleven hours a night – seemed impractical.

So I learned how to nap. I learned that throughout the night your sleep gets progressively lighter, with longer REM periods and less deep sleep. I also learned that your deepest sleep of the night is shortly after you fall asleep.

It is crucial then, when setting an alarm for a nap, to be sure it doesn’t go off during that deepest period of sleep lest you wake groggily, if at all. Rather, you want it to either go off before you really start sleeping, or to go off at the end of a natural sleep cycle, which ends every 1.5–2 hours. With this knowledge, and a biphasic schedule as my new norm, I entered graduate school.

After my sleep studies and throughout my self-education into sleep cycles, I had stopped telling people about my hypersomnia. I never asked for an extension during my undergraduate years. I never considered my hypersomnia a valid excuse when my condition - and all it entailed - didn’t catch me by surprise. Besides, silence was always easier.

“You should tell her,” a fellow Master’s student told me, referring to my graduate school supervisor. But I refused.

“What good will it do?”

“Why don’t you want to?” he asked.

I shrugged. “Because it’s a secret,” I replied, half-jokingly.

I didn’t want her to think that there was anything I couldn’t do because of it. I didn’t want her to tell me I was getting too much sleep like the co-workers I’d had in university. However, as I thought about it more, I realized that the answer I had given in jest was more true than I had known. It was a secret. From myself.

It might seem unlikely that I could have managed to deal with needing so much more sleep for so many years without really thinking about it, but I had. And I had because I’d deliberately tried to do so. It wasn’t that I’d forgotten that I needed 11 ½ hours of sleep each night, but I’d chosen to forget that other people didn’t need the same amount.

I had certainly failed in this self-induced ignorance at times, like the night of the party at the park and on many similar occasions. Living and working in close proximity to other people made our differences obvious. There were nights when I lay in bed, my depression increased by my fatigue, and faced my reality: No matter what I do, I’ll never have as much life to live as everyone else.

So the thought of telling my graduate supervisor frightened me. It frightened me because it not only potentially exposed me to more disbelief or hearing that I shouldn’t be in grad school with a condition like mine, but because it meant that someone else would know my secret and speak of it to me. It scared me because with each person I told, a tear was ripped into the elaborate lie I chose to live for my own happiness. It was a palace of deception that I was constantly repairing, that told me that I was the same as everyone else and had the same potential.

“I know of a neurologist who might help you,” a woman I was living with suggested to me once, trying to be helpful.

“There isn’t a cure,” I told her.

“Well you should try to contact him,” she said. “They’re finding out new things all the time.”

I thought about what she said. Not about contacting the specialist, but about her lack of understanding. I realized it might seem a reasonable thing to suggest from the outside, if you didn’t understand how emotionally difficult the idea of hope could be, when I knew there was none. Other people knowing and hope were the two forces that could weaken my stronghold, and expose my secret for what it was.

School got increasingly busy, but I kept pushing myself to survive on ten or eleven hours a night. It was counterintuitive to go to sleep when I was so far behind, though I knew I needed it to be productive as well as emotionally stable. The hours I slept on the weekends increased to make up for the sleep deficiency of my weekdays. Fourteen hours at first. Then 15, a new record. Then 16, another one.

When, for the first time in my life, my time management skills couldn’t hold up against my lack of time and I told my supervisor, the extensions she gave me didn’t set me at ease.

Instead, it felt like I had failed somehow, to have fallen back on an excuse that, even after a lifetime of living with, still felt like a lie. I was uneasy with the knowledge that I had given her, uneasy with my need to rely on accommodations that I couldn’t count on for the rest of my life.

I had always had a career goal in mind (complete with backup plans), but I began to lose the certainty of my future. Was it possible to be a professor with hypersomnia? As with so much else, I tried not to think about it.

Once, I met someone who seemed to have the same thing. Her hypersomnia had recently gotten worse; she needed a handful more hours of sleep each night than I did. We bonded over our circumstances. But then she had a sleep study.

“How did it go?” I asked her afterwards.

“They found out I have sleep apnea,” she explained. “They gave me a mask. It’ll be attractive for when I have guys over,” she joked.

“But what about your sleep?”

“Oh, it’s back to normal.” I felt like I’d missed something.

“What do you mean? How many hours?”

“The usual six to eight.”

I was shocked for a moment, and then I congratulated her. I couldn’t imagine something so good ever happening to me, and I wouldn’t risk trying. I felt happy for her, but I also felt alone. I had lost the only person I’d ever met who had been the same as me, and in one moment she had changed to one of the everyone-else.

One in 1,800 people have some form of primary hypersomnia – narcolepsy being the most common by far at one in 2,000– but only 1 in 20,000 have idiopathic hypersomnia. Though there is medication for narcolepsy and daytime sleepiness, there is no effective cure for needing more sleep at night. As my first specialist told me through his silence: my problem has always been that I am healthy.

My denial caught up with me at the end of my first year of grad school. For months, I had been napping under a stairwell between classes, scheduling every hour of every day just to survive. When that first year ended, I crashed and burned. I went on medical leave and slept for six months straight, at the worst waking to an alarm after 22 hours. I felt like I was dying without the dying part.

When I recovered, my sleep had increased by an hour and a half, up to 13 ½ hours per night. For the first time, I accepted the fact that I was disabled and made accommodations. Refusing to give up on the Master’s program that I loved, I reduced my workload to eight hours a week, using stimulants to help me accomplish even that much. After medical leave, I had a lingering anxiety whenever I set an alarm.

Having idiopathic hypersomnia means that I’m constantly pacing myself – what I read, what I learn, what I do – to avoid daytime fatigue. It means that I pass up on social opportunities every single week, because they start too late or too early. It means that when I’m sick with a minor cold, my sleep increases by a few hours and I can’t work at all for weeks. It means that, despite my credentials, I plan to live on social assistance till the end of my days. It means that every week I sleep the equivalent of a full time job more than everyone else. It means that, in thirty years, I’ll have lost an entire decade of my life to extra sleep.

And because my disability is invisible, it means that on top of all of these struggles, I’m constantly battling with the dismissal and disbelief of those I do tell.

Denial is a balm for the wounded. Youth today are  told that they can accomplish anything they set their mind to, that if they have a dream and put in the work, they can overcome any obstacle in their path. For me, as a disabled person who did everything in their power to “overcome” their disability, this is akin to Santa Claus: wonderful when you still believe in it, and a source of magic and hope, but inevitably – and devastatingly – not true.

Hypersomniacs are regularly given easy “solutions” to our symptoms by ignorant, but often well-meaning people: we just need to eat different foods or exercise more; we just need to try harder and not be so lazy; we just need to have a more positive outlook.

I would love for them to be right.

But there aren’t many of us, and none of us have the answers we want. Except through online support groups, I have never met even met a stranger with an invisible disability, much less one with my own condition. But then, I suppose that, until recently, only a few people had known of mine. Without ever having made a conscious decision, I had settled into a façade of normality: the fewer people who knew, the less often I had to face the truth.

Maybe I have met other people with invisible disabilities but just didn’t know. Maybe they, too, had lovingly woven cocoons around themselves, hiding their vulnerabilities in order to protect their hearts, their hopes, and their dreams. Maybe they were making the same decision that I did – to be silent, to pretend, and to keep the secret – for the sake of everyday happiness.

read frances's biography

return to issue 5: August 2017