10-15% of the U.S. adult population suffers with insomnia chronically. Yet in 2005, the NIH (National Institutes of Health) spent a mere $20 million researching insomnia. That same year, Sanofi Aventis spent $123 million advertising Ambien.
I’ve had insomnia as long as I can remember. I remember my parents trying to wrestle me to bed at what they called a “normal” hour, meaning any time before 1 A.M. “But I can’t sleep!” I’d wail. “Nonsense,” said my father, “of course you can sleep. “Everyone knows how to sleep. It’ s the most natural thing in the world—just close your eyes and relax, you’ll get sleepy. If only you’d listen to your mother and go to bed earlier. If only you wouldn’t get so wound up.” So it was something I was doing wrong, some obstinance of mine that I could change if I would.
My father was a normal sleeper and to the normal sleeper, sleep is “the most natural thing in the world.” He was a doctor, an old-style family practitioner who carried a black bag and delivered babies at home, one of a heroic vanished breed—but that didn’t mean he knew a thing about sleep. Sleep was no part of the curriculum when he was in medical school; it is barely a part of medical school curricula today, when doctors get as little as an hour or two instruction in sleep or sleep disorders. So the advice I hear from doctors these days is a lot like the advice I used to hear from him. “Just lie there and relax,” “don’t worry,” “go to bed earlier.”
What I mainly hear is that insomnia is a psychological problem, that it’s caused by worry, stress, depression, anxiety, some kind of neurosis or psychopathology. When I protest that I’m not particularly depressed or anxious, except about my sleep, that my lifestyle’s no more stressful than that of people I know who sleep fine, I’m offered an antidepressant. When I say, I think it’s hormones, doctors aren’t interested in my hormones. It was as though they already know, they’ve made up their mind, that it’s a psychological problem, something I could change if I’d change my attitude or ways. I then get told to avoid caffeine and alcohol, get more exercise, take a hot bath, warm milk, sleep in a dark, quiet room.
So I decided to find out what is going on, that I’m still hearing the same advice I heard fifty years ago. I started talking to the researchers, to find out about the state of the science, and talking to the people who live with the condition, to find out what they know. I think that people who live with conditions have inside information about these condition. We live in our bodies. Women have always known that hormones affect sleep, that insomnia is worse at certain times in the monthly and life cycle, though it took researchers till the late nineties to catch up to this realization. If someone had asked us, they might have figured it out much sooner.
I wanted to hear what insomniacs have to say, their hunches about how they came by insomnia, what they’ve found that works. I tracked down everyone I’ve ever heard of or known who has insomnia, friends, friends of friends, relatives of friends, acquaintances, colleagues, students. I placed ads, I spent late night hours on the Web, surfing message boards, blogs, newsgroups. And I learned that, sure enough, insomniacs have fascinating ideas about where the problem came from, and wonderfully imaginative ways of dealing with it.
I started going to the sleep meetings. Yes, there are such things, and they’re a big deal—more than 5000 people attend the annual Association of Professional Sleep Societies, where scientists, physicians, psychotherapists, nurses, geriatricians, social workers, epidemiologists, sleep technicians, drug company representatives, gather from around the world to share the latest in research and treatments. At these meetings I learned how little is actually known about insomnia—and how little is known about sleep, for that matter. I realized that insomnia can’t be written off as a psychological problem, when so little is known about it, and when so much about sleep behavior—how much sleep we need, whether we’re morning or night people—is inborn and genetic.
I wrote the kind of book I wish I’d had all these years dealing with insomnia, a guide through this territory that normal sleepers barely know exists. Insomniac is not a self-help book, but a self-enabling book, says an Amazon reader. I don’t offer a “program” but I do describe things people find helpful, ways they might think about their problem and approaches they might try, a potpourri of methods and approaches gleaned from living with the condition and talking to others who live with it, not listening to “experts” who’ve never had a sleepless night.
Some of what the experts tell us is very true and important, like being careful about caffeine and alcohol. But nobody can tell you “the sure rules to sound sleep.” You have to find out for yourself what works for you. Experts say, don’t read in bed or watch an exciting DVD close to bedtime. In fact, many insomniacs find that reading in bed helps them sleep—and I find that a DVD helps. And the more dramatic and vivid it is, the more likely it is to send me to sleep with visions of other places, other lives, dancing through my head—and all the more likely it is to help me sleep. (Nothing violent or too depressing, of course.)
There are many routes to insomnia and many routes away from it, ways as individual and idiosyncratic as we ourselves are. Different strokes for different folks. That goes for meds, too. Don’t assume that the first drug your doctor offers you is going to do the trick. I’ve learned about managing sleep medications through a long, painful process of trial and error. What I write about meds may spare others that pain.
You have to find your own way. Do your own research. Read widely, my book and other books and what’s on the web—find out what works for other people, learn all you can. Try things out, then cobble together something that works for you. There are no one size fits all solutions. There is only what you can find that works.
And communicate. Come out of the closet. Let people know—friends, families, employers—that this is a serious problem, seriously disabling, that it’s not going to go away with a hot bath or warm milk.
“Maybe sometime in the future, around the year 2000, say” wrote Douglas Colligan in Creative Insomnia, in 1978, “we’ll have toll free hotline number 800 NO-SLEEP for the National Information Network of Insomniacs Anonymous. It’s a brutal fact of life that while people who are victims of everything from schizophrenia to hay fever have some group to turn to for help, the insomniac has to rough it alone.” I wonder, if Heath Ledger had had such a hotline, might he have reached for the phone instead of for another drug…
But the year 2000 is long past, and no hotline exists. Insomniacs still have no patient-organized advocacy groups to put pressure for more research, no support groups other than a few on-line chatrooms. There are national organizations for sleep disorders that are far rarer than insomnia—narcolepsy, apnea, and restless leg syndrome—and for just about any other problem you can name, but there are no patient-organized groups for insomnia.
Have we been so talked out of our experience, so shamed out of it, that we’re not sufficiently on our own side to organize on our own behalf? Maybe it’s time we find our voices.