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Sleep Starved: A site by insomniacs and for insomniacs who are looking for something new…
Mar
4

Networking

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?

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5 Responses to “Networking”

  1. Beverly

    I have now read most of the book Insomniac. I agree that we need to organize. But I have to say that I have little, if any faith in the research path. As far as I can tell, and Gayle does touch on this in her book, all research in the USA is profit-driven. As a result, it is common that when research findings are not what the corporate profit-driven machine wants, researchers are coerced into changing or selectively presenting their findings if they want to keep their jobs. This is not likely to change anytime soon. Robert Becker wrote a wonderful book based on his research experiences in healing that exposes this. I read something once that said 4 out of 5 researchers for the FDA said they were asked to change their findings at some point or other. I could be remembering this wrong, but I do remember it was a high number. At any rate we must question the motives of research.

    Having said this, I think we insomniacs are likely to find healing the way that some of us already have, which is through our own exploration. However, I think we can much improve on this by networking and organizing with each other so that we can benefit from each others’ experiences. Gayle does mention in her book that support groups are important. I think this is absolutely the place to begin. Computers are great, but can’t replace in-person contact and real life support. I am an LCSW and thinking of beginning a support group for insomniacs in my area of Humboldt County California. My vision is to develop a format where we can share experiences, present information to each other, bring in speakers, choose individual methods for coping with insomnia based on our personal stories and find ways to support each other (outside of group time) so that we can stick to our method and give it a solid try before deciding what works or doesn’t work. I would be curious to know if anyone has already done this. I am only aware of sleep groups that are given by the “experts” such as the one at Stanford (which is okay), but none started by fellow sufferers. My story with insomnia is under the “How this has affected your life” topic area of this website.

  2. susan

    I just came upon this sight after many years of suffering from insomnia never reading or doing any research on my own. I have been under the care of a psychiatrist who just keeps having me try all of the medications out there, none have worked. Oh don’t get me wrong they do help me sleep somewhat, but I am unable to function at work the next day, my productivity comes to a stand still & I am unable concentrate. I have to work, so in order to keep my job I can not take sleep medications. Being awake all night & having to go to work the next day is horrible too, my productivity & concentration is affected by the insomnia but not nearly as much as by the medication.
    When I came upon this website I started to cry because it is the first time in my life that I do not feel so alone. I think that I will stay tuned in to this site just to see if any groups start up in the area I live in which is Sacramento Ca. Networking is an excellent idea.

  3. Ann

    I just wanted to share my experience with finding a support group. The NJ Self-Help Clearinghouse informed me that not only are there no self-help groups for insomnia in New Jersey, but there is not one IN THE ENTIRE US! The person I spoke to also said that I am the FIRST person requesting this in all the years she’s worked there from 1988!!! Is this thing so deeply buried in the closet that no one is willing to meet to talk about it?! If there are any of you out there who would like to get together, please let me know. I live in central NJ.

  4. freerockspirit

    Ann I’m sure this is a common experience. I never found anyone who could really understand - let alone a self help group. See my posting which may be of help - under ‘what works what doesn’t’. If you want to talk more about it please e-mail me. Not exactly a self-help group but…

  5. seattlerandom

    Everyone knows a bit about not sleeping, but very little about chronic insomnia. “More aerobic exercise” is the latest from a family member who means well. My god I’ve tried more exercise, more running, more yoga, being vegan; and some of it helps around the edges. But I still get spells where the day after the third night of waking for good at 2-3, my life goes to hell. acupuncture has been my best tool but it is still not a “fix”. Mixed results with meds, I hate this. “I see kids orphaned in Iraq and think, “now they have real problems.” They seem to be fighting so hard to have a better life. But my zest and fight is waning.

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