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?