On New Year’s Eve, home from a party, around 3 AM, I happened onto a blog on a New York Times Nov. 7 article, “Curing Insomnia Without the Pills.”
599 people had responded to this article, which was one of those well-intentioned articles, “you can sleep without pills, just follow the simple rules,” and I sat there riveted, read through all 599 postings. There was no heat in the room where the internet connection is, I was freezing, bundled up sweaters and coats, and I sat there until 5 AM, reading every single posting. I was amused to come upon the comment, somewhere in the 400s, that if you’ve read this far, you know you’re a real insomniac. Yup!
There were so many voices on this blog that could have been me talking/writing. Here are a few:
I have tried these B-mod techniques, and they are probably good for someone with garden variety insomnia, but not for true sufferers. And it is hard to listen to all this light chatter… and once again have the blame cast on my behaviour problems. It just ain’t so. …
So please ease up on the cheery light approach to a very real, and disabling problem. One size does not fit all.
Great advice and easy to follow if you happen to live in an enclosed contemplative monastery. Any advice for the rest of us?
As a person who suffered for many years and consistently tried all of the “behavioral techniques” listed, I can’t even begin to express how annoying advice from people who don’t really understand the problem can be.
While I wouldn’t ignore the sleep hygiene advice, it is not an adequate answer for most of us. Just once I’d like to hear an honest “There isn’t much we can do.”
the article trivialized the pain, suffering, and potentially lethal consequences created by severe and chronic insomnia.
Don’t tell me to go see any more doctors who can’t get their heads out of the clouds because they think they know what it is I go through… Try and understand what it is a real insomniac goes through and let everyone you know that for people like me…we don’t care if Ambien is addictive… For us it is a small miracle that gives our lives normalcy.
I was amazed to hear so many people saying exactly what I said in the book—or maybe not so amazed, since if I hadn’t thought there were lots of us, I wouldn’t have spent six years writing Insomniac. I was heartened to hear so many sticking up for themselves, saying, enough is enough, we don’t want that same-old advice. To be fair, there were other voices, who said that behavioral modification did work— one guy who’d been to boot camp said he learned there that “it works.” And it does work for some—how many, and what kind of people, and what kind of insomnia they have, nobody knows.
I was also interested to see how many people said they’ve lived with insomnia all their life, had it since childhood—and yet childhood onset insomnia is said to be rare.
I’m always moved, when I read through postings from insomniacs, to see what people live with, how they manage. And also intrigued to find the things they come up with, ways they find of living with it. I recommend this blog—it’s good reading.
I have learned more about sleep from this lively discussion by many obviously experienced and knowledgeable readers then I would have had I gone to a sleep clinic.
I’ll keep this site—will not feel alone with my problem again” wrote a 74 year old woman, four hundredth something.
I got to leave the 600th posting, on the cusp of the new year, and to say Happy New Year.
And P.S., at the party I’d just come home from, I’d consumed nearly a bottle of champagne and several rich desserts. I then stayed up way too late, staring into a computer screen till nearly dawn, and with all that booze and sugar coursing through my system, violating every rule in the book, I dropped off and slept six straight hours, without a pill, something I manage maybe a half dozen times a year. Go figure. Of course, it might as easily have flipped the other way. I guess in a way that’s not very helpful, I’m sort of fatalistic about my sleep. Sometimes the sleep fairy visits, mostly she does not.
A few months after I came upon Tara Parker-Pope’s blog, March 21, my book Insomniac got featured on that same blog , “The Wretched Life of the Insomniac,” “Writer Gayle Greene’s new book, Insomniac, from the University of California Press, is both memoir and investigation into the world of insomnia.…. ”??http://well.blogs.nytimes.com/2008/03/21/the-wretched-life-of-the-insomniac/
I wish Parker-Pope had called this blog something other than “The Wretched Life of the Insomniac,” since that title is so untrue to the spirit or content of my book. It makes it sound like one long moan, when in fact I say clearly that I’m one of the lucky ones, someone who has the good fortune of being able to structure my own work hours and who sleeps better than many of the people I interviewed for the book. Besides, INSOMNIAC is not just about me. It’s about millions of people who have worse insomnia than I do, who are caught in a 9 to 5 world and impossible schedules, trying to get kids off to school. it’s about trying to understand the problem from scientific and medical points of view, about learning ways of living with it, about getting insomnia taken more seriously. It is NOT about my wretched life because I don’t actually have a wretched life.
Anyway, there were some great comments left on this blog, such as,
I wish the medical establishment would do more to really address this and stop just doling out pills or advice I tried 15 or 20 years ago that did not make a dent in this. I believe this is as much a chemical imbalance as serotonin problems, and wish medical research would get to work on some real solution to this.
But the discussion got massively derailed by “Jack,” who, in comment #2, pointed to the glass of wine in my author photo as evidence that I hadn’t made all the necessary lifestyle changes (actually, since May I don’t even drink wine—not that it’s made any difference to my sleep). And Jack kept coming back, like a bad burp, accusing us insomniacs of wanting a quick fix, of whining, of choosing to suffer and enjoying our victim status.
I’ve met a lot of people like Jack. In my book I write about the negative stereotypes insomniacs so often come up against, from doctors, colleagues, friends, even family. Even in the scientific literature, I found insomniacs caricatured as neurotic, whining snivelers, chronic complainers. And along comes Jack, like Exhibit A, to make my point.
People in the rest of the blog called him a jerk, said he was just looking for attention, had self-esteem problems.
Jack, what is your problem? Have you never heard, “If you don’t want to help, at least don’t get in the way of those who do?” All you are doing is parading your own ignorance and tacky disposition.
Have you considered that seeking out a blog like this, just to comment that other posters are whiners, is also a form of whining?
Then other people came to his defense. Jack, in fact, provoked a lot more comments and got a lot a lot more attention than I did. His ideas, if you could call them that, were referred to again and again; mine got lost in the shuffle.
It was painful to see my book, which took me six years to research and write, get lost like this, and Jack, who hasn’t a clue what he’s talking about, get taken that seriously, making the discussion fizzle and dribble away. Why is it so hard to get on with the work we need to do? — to get people to recognize insomnia as a serious problem, seriously neglected, underresearched and underfunded.
Julie Deardorf, “Did insomnia kill Heath Ledger?” Chicago Tribune, Feb. 6, 2008
Insomnia medications were reportedly part of the prescription drug cocktail that killed Health Ledger, yet for some reason we still don’t take these drugs seriously.
What outcome can we hope for, from his tragic death? Tighter FDA restrictions? More education and caution on the part of people who take sleeping pills? Better kinds of sleeping pills?
Mark Loftin, “Heath Ledger and Personal Responsibility,” American Thinker, Feb. 9, 2008
“The idea that Ledger himself may be culpable for his death eludes the left. It’s easier to blame the US healthcare system….”
“For others who are unwittingly using dangerous combinations of sleeping pills and anti-anxiety drugs that were never intended to be taken together, perhaps Ledger’s death will prompt them to wake up – so to speak.”
Sarah Britten, “Heath Ledger played Russian Roulette with prescription drugs,” The Times, Johannesburg, Gauteng, South Africa
I want to know what you know about insomnia, where you think it came from, the impact it’s had on your life, your experiences with drugs, sleep clinics, cognitive behavioral therapy, alternative therapies, the ways you’ve found of coping, and any other insights you have that might shed insight on this complex condition.
Insomniacs are said to be “emotionally seclusive and socially withdrawn,” “mentally and physically inactive, uncomfortable, sleepy, indifferent, not enjoying themselves, and depressed.” They appear to be a “distressed, pessimistic, worried group who face the world with apprehension, anxiety, and self-deprecation.” They have “greater difficulty in interpersonal relationships,” “impaired social skills or negative social attitudes.” Since they have a tendency to deny psychological problems, “essentially considering sleeplessness to be the entire problem,” they have a “strong resistance to the physician’s exploration of problem areas; a need for control, as expressed in manipulation of medications and lack of compliance with general measures.” Even when they deny that they’re depressed and insist that sleeplessness is “the entire problem,” they are depressed. —Insomniac
I am really very tired of being told what it’s like to live in my body by people who haven’t a clue.–Insomniac
What time of life, childhood, adolescence, motherhood, menopause?
Childhood onset insomnia is said to be rare, but a lot of people talk of their insomnia as going back forever.
Adolescent onset insomnia is also said to be “rare.” And yet many people trace their insomnia to this time.
Researchers tells us that most insomnia is brought on by a stressful event or event which then settles in and becomes conditioned. Has this been your experience?
Do you think it’s related to childhood stress or trauma?
Does it run in your family?
Is it related to your hormonal fluctuations?
Is it related to the work you do? Job and money insecurities?
Do you have other health conditions—such as autoimmune or gastric or low blood sugar –you think are related to insomnia? (other than obvious things that would keep anyone awake, like pain—I mean, subtler connections between something going on in your body and sleep disturbance)?
“…if you want to know how you’re going to feel in a decade’s time, you should stay awake all night and go into work. It simulates 10 years of ageing…”
Laura Barton and Charlie Brooker, “Pillows, Pills, and Potions,” Guardian Unlimited, UK, Guardian.Co, Feb. 5, 2008
Are the people in your life, family, workplace, supportive about this problem?
Experiences in the workplace?
Do you think it’s bad thoughts that keep you awake, or biochemistry?
Dreams: good dreams, bad dreams, dreams that seem to wake you up?
Do you think you have more dreams than people you know who sleep well?
Do insomniacs have access to in-between states that good sleepers miss?
What therapies would you like to see discussed or developed?
What questions would you like to see research address?
What insights or experiences with insomnia would you like the world to know about?
Many of us have drug horror stories. We also have horror stories about doctors who’ve been too cautious or too careless in prescribing to us.
Some of us work out happy relationships with a particular drug, find a drug or a combination of drugs that works and keeps on working.
All sleep medications affect the sleep cycles; none gives “natural” sleep. All have next-day effects on memory and coordination. Some leave hangovers; some accumulate in the system, making the person become permanently drowsy; some are addictive.
Memory and coordination are the best documented side effects of the benzodiazepines. But there are others that are less well documented.
Ambien—though it works for me, as long as I keep the dose low and take it mainly in the last part of the night—has been associated with some pretty bizarre behavior, like sleepeating and sleepdriving.
I have a sense that the benzos and non-benzos and even Benedryl affect my vision the next day. When I’ve been in bright sunlight, then come in out of the sun, after doing something that speeds my heart and metabolism, like swimming or climbing the four flights to my office, I see a weird wavy effect off to the edge of my vision. It only happens after I’ve taken a sleep med. It’s hard to describe, something like the shadow a ceiling fan might cast against a fluorescent light; it strobes with my pulse. My vision is worsening alarmingly. I have a retinal wrinkle that puckers the visual field of my right eye so there are no straight lines on that side of the world. There’s also a “pseudo hole” in that retina that I’ve been told, grotesquely, to “keep an eye on”; and I do actually see it –on days after I’ve taken a sleep med— like a small, opaque contact lens that’s wandered off course, making a greenish dead spot; sometimes it zigzags across my line of vision.
Does anybody have anything like the effect I describe with vision?
Nobody knows what sleep medications do long-term because they haven’t been studied long-term.
–your sense of long-term effects on you?
Xyrem. Has anybody found this works for insomnia?
What I wrote about it:
After I was up an hour or so, came this amazing clarity. I felt so alert I hardly recognized the condition: I had a day writing unlike any I could remember, when the words, the ideas, the images just came pouring out, and the energy lasted well into the night (too well, in fact—it didn’t turn off). I had a mind not stumbling and sluggish and forgetful of what I was thinking the second before, but clear, searching, focused. I think the initial grogginess may have come from having slept so deeply: my body was in a state of shock from so unusual an experience. I now take it once, twice, at most three times a week, and not every day is like that first, but many days are. There are other things I like about it: it always works, unlike the benzos and non-benzos, which occasionally don’t grab hold, which leaves me facing the day both sleep-deprived and drugged. And it seems sometimes to leave me less hungry.
When I wrote that, I was more enthusiastic about this drug than I am now. I take it hardly at all anymore. The last stretch of the book, I was on leave of absence from teaching, I was staying at home, writing. Xyrem gave me a kind of sleep that gave me terrific concentration. But it doesn’t work so well when I have to respond to a lot of things coming at me—as on a day teaching. I also don’t like the way I look after I take it—pale and puffy (I’m having more problems with salt than I did a year ago) And it’s not working as well. If I upped the dose, it might, but I’d rather not. ( I only ever took 3.5 g, in the second part of the night.) I do still take it occasionally on days I get to stay home and write, but for everyday use, I’m back to Ambien. (No, I’m not on the take from Sanofi-Aventis.)
I don’t know how many insomniacs feel as I do about their experiences with clinics, but I come across quite a few people who say they’d hoped to learn more about their problem but they hadn’t got anything by way of advice or medication that they couldn’t have got elsewhere, for a lot less money.
What I wanted was the research, to learn about my hormone levels. They don’t even look at hormones. There was a lot of borderline psychobabble and new age talk, make yourself comfortable, turn the lights off. I got told about sleep hygiene, told to get more exercise.
They gave me a pamphlet on sleep hygiene. You can read about sleep hygiene anywhere.
If you don’t have apnea, forget it. They have nothing for you. That didn’t stop them from taking my money. I was using my own money, and it cost quite a lot.
My doc said he’d refer me to a clinic if I wanted, but he said nobody he’d ever referred had got much out of them.
Were you helped by your experience with a sleep clinic?
The idea behind behavioral modification is that insomnia has been precipitated by a stressful event or events, and has then settled in, like a had habit. Like Pavlov’s dogs, conditioned to salivate at the sound of a bell they’ve learned to associate with food, insomniacs have developed wake-up associations with sleep and bed. “When the stressors fade away,” writes Charles Morin, leading proponent of behavioral modification and the author of Relief from Insomnia, some people “may have developed negative reactions to stimuli normally conducive to sleep (e.g., bed, bedtime, bedroom). What used to be a place and time for relaxation and sleep is now associated with frustration, anxiety, and sleeplessness… Over time, a conditioning process leads to a vicious cycle of insomnia.”
Behavioral modification is a group of therapies aimed at reconditioning us. Stimulus control therapy aims at getting the insomniac to associate the bed with sleep. Go to bed only when sleepy, use the bed only for sleep and sex, avoid naps and so-called sleep-incompatible behaviors, such as reading, watching TV, eating, talking, in the bedroom. Sleep restriction therapy requires that you restrict time in bed to the time you spend asleep. If you think that you get five hours sleep, you should go to bed at your usual time and set the alarm for five hours later. When you wake up before the alarm, make yourself get out of bed –some say after 10 minutes, some say 20, some give a “quarter of an hour rule.” Then go to another room and watch TV or read. When you begin to feel sleepy, go back to bed but if you don’t fall asleep in 10-20 minutes, repeat the process, getting out of bed and going to another room again. However little sleep you’ve had, get up to that alarm without fail, seven days a week. The idea is that by restricting time in bed to the time you actually sleep, you create what Morin calls “mild sleep deprivation, which results in more consolidated and more efficient sleep.” When you find yourself sleeping 90% of the time you spend in bed (i.e., attain 90% sleep efficiency) and sustain this for five consecutive days, you may extend your time in bed by 15 minutes. But if your sleep efficiency drops below 85%, reduce your time in bed to match your average sleep length for the past five days, but do not reduce it to less than five hours….
Taken together, cognitive restructuring, stimulus control, and sleep restriction are called cognitive behavioral therapy (CBT). Sleep hygiene is also important: sleep in a dark, quiet place, cut out caffeine, alcohol, big meals or stimulating activity late in the day, don’t exercise too close to bedtime.
Sleepnet.com tells stories of people who’ve used these methods to teach themselves to sleep again: it’s given me my life back. People who post here recommend readings that have helped them: Gregg Jacob’s Say Goodnight to Insomnia, Peter Hauri’s No More Sleepless Nights, Charles Morin’s Relief from Insomnia, and primarily John Wiedman’s Desperately Seeking Snoozin, which many insomniacs find inspirational because it’s written by someone they identify with, a “recovering” insomniac, as he calls himself, a man who has reformed his sleep by rigorously, religiously, adhering to what he and others call “the program.”
And yet, as Charles Morin acknowledges, “not many people are using CBT, it looks like.”
Sleep restriction is a crucial part of re-conditioning our sleep. Some people find this very effective, as a way of teaching themselves to sleep again. But some do not.
Your experiences with these methods?
“When you can’t sleep, get out of bed and do something else.” This also is crucial to behavioral modification. Does it work for you? Do you ever find that staying in bed is restorative?
**Some say that CBT hasn’t caught on because people don’t know about it and because the pharmaceutical industry is too powerful.
“It is in many people’s interest for us not to know about CBT as a treatment for insomnia. Because upon our anxieties, our insecurities and our feelings of inadequacy, a multi-billion-pound [dollar] industry is built.”
Laura Barton and Charlie Brooker, “Pillows, Pills, and Potions, Guardian Unlimited, UK, Guardian.Co, Feb. 5, 2008
Mainstream western medicine is good at fixing things, but for chronic conditions (which are by definition conditions that can’t be fixed), people seek out alternative therapies, where they find practitioners who take more time with them and who approach insomnia as though the body – our hormones, the foods we eat – plays a part in the problem.
I’ve tried (nearly) everything anyone has ever told me worked for them, and it’s taken me some strange ways: lathering myself in sesame oil, brewing a Chinese herbal tea so foul that my dog fled the kitchen when it steeped, concocting a magnesium supplement that hissed and spat like something out of Harry Potter. I’ve driven across two counties to a guru who claimed to have the secret of sleep. I’ve tried valerian, kava kava, chamomile, skullcap, passionflower, homeopathic concoctions, l-tryptophan, 5-HTP, GABA, melatonin… I took the talking cure with a psychiatrist and a psychologist, and though the psychologist helped me sort things out, she hadn’t a clue why I sleep so badly or what I should do about it. I’ve tried most of the benzodiazepines…all the non-benzodiazepines… I’ve tried acupuncture, biofeedback, meditation, hypnosis, self-hypnosis, relaxation tapes, ayurvedic medicine, adrenal support supplements, blackstrap molasses, wheat germ, bananas by the bunch, licorice root, SAME, St. John’s Wort, yoga positions, and at one point, I was swimming 3-4 miles a day. I’ve worn a magnet necklace. … I thought I’d tried everything there was to try, but when I started talking to insomniacs, I realized I’d missed a few: I have not consulted a psychic, hung in a flotation tank, done cranial electrical stimulation, slept with a cathode ion collector dish by the bed. I have not tried chelation treatment (getting the lead out), colostrom (don’t ask), sleeping with my head pointed north, or west, or Ordeal Therapy, unless you call vacuuming the house at 4 AM, which I used to do, “ordeal therapy.”
Vitamin therapies that have worked?
Herbs which are known to help sleep include passionflower, also called helmet flower, hoodwort, and mad-dog weed; skullcap, a member of the mint family (mint also may have sedative properties); hops, rich in vitamin B; chamomile, kava-kava, lemon balm, Reishi mushroom, and valerian. These are often combined in supplements available in health food stores.
Traditional remedies, Ayurvedic and acupuncture?
People find help in odd and interesting places, so it’s good to keep an open mind.
I hear about success with aromatherapy, especially lavender and cedar. I hear about a gizmo that tickles your scalp and makes you yawn, a shower with hard pounding nozzles in your back, and a jacuzzi. I hear about what one woman delicately refers to as “self-organized orgasm.” I hear about Infra red sauna therapy, which raises the body temperature 3 degrees for at least 10 minutes… I hear of successes with Craniosacral Therapy (cranio meaning head, sacral meaning the base of the spine). This is a technique that is said to manipulate the sutures of the skull, where the bones meet, to ease pressure in the craniosacral system.
Transcranial magnet stimulation (TMS), which uses electromagnetic pulses to stimulate neural activity in specific parts of the brain,
cranial electrotherapy stimulation, a technique begun in the Soviet Union in the fifties, the so-called “sleep machine.”
Brain music is made with a special computer program and the patient’s EEG. The EEG patterns are converted into music recorded on a compact disk; some say it helps you sleep.
EMDR, Eye Movement Desensitization and Reprocessing, is a fascinating therapy that originated in 1987 for the treatment of post-traumatic stress disorder. Therapists use hand movements or a flashing light to provide side-to-side stimulus for the eyes to follow; sometimes they use auditory stimuli, tones or tapping, that are made to alternate from ear to ear. While this is going on, the patient talks about the traumatic events, and somehow in the process, comes to see them in a less threatening light. Some say it’s worth months of talk therapy. Some say it helps sleep.
Mind machines, which provide goggles which flash lights and earphones which thrum and hum. Some say this is good for a racing mind.
Biofeedback devices give “feedback” through auditory tones or visual signals, on what’s going on in you physiologically, so you can learn to consciously regulate unconscious functions such as heart rate, breathing, blood pressure, muscle tension; they teach you to bring the autonomic nervous system under voluntary control.
I have heard insomniacs swear by hypnotherapy.
Brain music or other music therapies—anybody had any luck with these?
“Created to meet the needs of sleep sufferers, “Bedtime Beats®” was carefully programmed in accordance with research from Case Western Reserve University, which found that soothing music — specifically music with a tempo of 60-80 beats per minute (BPM) — resulted in significantly better perceived sleep quality, longer sleep duration, greater sleep efficiency, and more. The music featured in each set is specially sequenced and mastered to deliver a highly tranquil experience. People of all ages can benefit from the music, provided they listen daily for at least two weeks at the outset and begin listening to the CDs at least 15 minutes before bedtime.
Sleep is personal, sleep is interwoven into the fabric of our deepest beings. It’s not surprising, then, that we work out ways of dealing with sleep that are as individual and distinctive as we ourselves are.
What things have you found that help?
Foods you’ve found that help?
Techniques do you use to get to sleep? To get back to sleep after you’ve awakened in the middle of the night?
Hormone replacement therapy: does it help your sleep?
Your experience going on hormone replacement therapy? coming off it?
Findings are equivocal: some studies say that it helps sleep, some that it doesn’t, and a recent survey of the literature concludes that there’s evidence both ways.
Progesterone: have you found it to be effective with sleep?
The babbling mind—
“We talk to ourselves all the time,” writes Allan Hobson; “We cannot imagine thinking without telling ourselves things; plans for the day, reactions to people, abstract analyses… fantasies.” Hobson is not, to my knowledge, an insomniac, but novelist Anne Lamott is: “Left to its own devices, my mind spends much of its time having conversations with people who aren’t there. I walk along defending myself to people, or exchanging repartee with them, or rationalizing my behavior, or seducing them with gossip, or pretending I’m on their TV talk show or whatever.” In her novel Unless, Carol Shields describes “the lifelong dialogue that goes on in a person’s head, the longest conversation any of us has. O hello, it’s me again. And again. The most interesting conversation we’ll ever know, and the most circular and repetitive and insane. Please, not that woman again! Doesn’t she ever shut up?”
Maybe it’s louder in some people than in others (loudest in writers?), but I bet it comes with the territory of being human. Man, the speaking animal, the babbling animal. No other creature is like this. Language is what makes us human. Language enables thought, the kind of thought that leads to further thought, that propels us forward to conceptualize, reflect. It serves us well, in most respects, pushing us to higher-order activities of abstraction and imagination, but then it gets out of control, it won’t shut up, to the point that we can be sitting on an idyllic beach, and we go on babbling. The Buddhists call this the chattering monkey that scrambles from thought to thought. Anne Lamott compares her mind to a spider monkey on acid: “I wish I could leave it in the fridge when I go out, but it likes to come with me.” …
Is this clamor louder in writers than in other people? So many writers are insomniacs— Marcel Proust, Franz Kafka, Mark Twain, Alexander Dumas, F. Scott Fitzgerald, Jorge Luis Borges, Rudyard Kipling, Victor Hugo, Edgar Allen Poe, Vladimir Nabokov, Charles Dickens, Joyce Carol Oates, Jacqueline Susan, Rick Bragg, Ann Lamott, maybe even Shakespeare—that it’s practically an occupational hazard. For all I know, I came by my insomnia just by hanging around this illustrious lot. Do people who deal with words all day long sleep worse than people who deal with visuals—do artists have less insomnia than writers? —Insomniac
How to get the mind to shut up?
Anybody but me see a connection between wakefulness and words, and visual imagery and sleep?
Visualization techniques you’ve found that work?
Why are so many writers insomniacs? Are more writers insomniacs than artists?
Books you’ve read that have helped?
Things people have said that have helped?
What is the smartest, most helpful think a doctor has ever told you?
What is the dumbest, least helpful thing a doctor ever told you?
The up side to insomnia?
You are not alone, and it may help to know this, because insomnia is the loneliest of conditions: you’re awake when the rest of the world’s asleep, no matter who’s by your side, and then, when the world’s awake, you’re too wiped out to reach out and make contact. If we find each other, we might help each other.
“If you look at where the research funding goes,” as a doctor friend tells me, “It’s where the advocacy groups are, places like breast cancer and AIDS. That’s where things are happening. Where people are making noise.”
“Would it help draw attention to the problem if insomniacs got together and became activists?” I asked Peter Hauri, pioneer sleep researcher and author of No More Sleepless Nights.
“Yes,” came the response, unhesitating, emphatic. “That has happened in other areas. But insomnia patients have never been that well organized.”
“Why not?” I asked.
“They don’t want everybody else to know they have insomnia; also, they still lead productive lives, they have no time. Mainly, I think, they don’t want to expose themselves.”
It’s not easy to make a movement when the stigma attached to your condition makes you want to hide it rather than publicize it, and when it’s all you can do to get through the day. But women a lot sicker than we are have done it. A few decades ago, breast cancer was a well-kept secret, until women decided they could no longer trust the professionals to look after their best interests and made advocacy groups that brought this condition attention and funding. Patient advocacy groups have formed around Restless Legs Syndrome and narcolepsy, sleep disorders that affect far fewer people than insomnia. Yet none has formed around insomnia.
Research breakthroughs require research expenditure. Maybe it’s time we recognize that insomnia is not a problem we’re bringing on ourselves that we could change if we’d get a grip, but a condition that’s serious and debilitating and needs more and better research.
Wouldn’t it be great if we could organize the way other diseases have, says my friend Roberta, have a central organization that would speak for our interests, ride herd on Congress to make sure there was research money, check in with researchers to find out what they’re doing, make a newsletter or a journal? Other disease groups have done this. Why not us?
But it’s not true….
Gayle Greene, “Bring the agony of insomnia to light,” Providence Journal, projo.com, Feb. 15, 2008. Read more….
“Snooze Alarm: What the deaths of celebrities can teach us about the dangers of insomnia,” Opinion, Los Angeles Times, March 30, 2008