Gathering on the internet, around their disorder

When I was first diagnosed with OCD, almost 9 years ago now, I remember finding someone else who also had fears of AIDS contamination. I gasped, and then giggled a bit, in relief. I wasn't alone. For the seven years between the onset of my symptoms and my diagnosis, I thought I was living in a delusional world, Population: One.

I wasn't. And it felt pretty good.

Many people diagnosed with a mental illness (or other condition) find great solace in virtual gathering places where they feel less alone, where their daily trials and tribulations are understood and honored. These places--websites, blogs, bulletin boards, chat rooms--can be incredibly healing.

They can also keep an individual stuck in their illness.

An article in this week's New York Times discussed a disturbing trend of websites that support the idea of mind control. In this case, sufferers of paranoia or schizophrenia who believe they are being stalked or that their minds are being controlled gather together on websites, where they swap stories and provide evidence of how they are all being stalked or controlled.

In the article, Dr. Ralph Hoffman, a psychiatry professor at Yale is quoted as saying:

“The views of these belief systems are like a shark that has to be constantly fed,” Dr. Hoffman said. “If you don’t feed the delusion, sooner or later it will die out or diminish on its own accord. The key thing is that it needs to be repetitively reinforced.”

You could easily argue, as was mentioned in the paragraph after this quote, that the pro-eating disorder websites are exactly the same thing.

A person with an eating disorder isn't generally delusional, except on the subject of food and weight. Then, all bets are off. And this gathering of people only feeds and reinforces the "shark" of the eating disorder. The solace of knowing you aren't the only person afraid of potential calories in Chap Stick is lost to the swapping of weight loss tips and out-and-out competition to lose the most weight.

Some have argued that these websites can be the only support these sufferers get, and so leave them up. But these websites aren't supporting sufferers. They're supporting the illness.

And that is the difference. It's why I participate in this blogging community, and not other message boards, including those deemed "pro-recovery." There, I often feel I am shouting into the wind, and that those sites only reinforce the illness. Why is this community different? Perhaps its people in recovery or actively pursuing it. Maybe it's because we don't just talk about the eating disorder.

Speaking of people believing they are being stalked or controlled: "These people lead quietly desperate lives,” said Dr. Jeffrey A. Lieberman, chairman of the Department of Psychiatry at Columbia University. “And if they are reinforcing each other and pulling people toward something, if they are using the Internet and getting reinforcement, that’s good."

And in this little corner of the blogosphere, I think, we are are really reinforcing recovery.


Tiptoe said...

Carrie, I agree with you that this blogosphere community does feel more recovery-oriented than standard message boards, even those who do emphasize recovery.

I really had to stop going there on a regular basis to move myself into recovery. I know at one point in time, those message boards were helpful to me, but as a firm believer in "evolvement," things just changed and I needed something different. It just got to a point of fueling the ED and constantly comparing myself to others there.

I still browse the topics, as interesting ones do come up from time to time, but I feel very removed in general. And that is a good thing.

Reinforcement for recovery in whatever way possible is a gold start in my book.

Anonymous said...

I think so too, Carrie. Your blog and others have helped me a lot. I don't have a blog so maybe I shouldn't identify myself as part of the blogging community but in an internet-y type of a way I feel as though I have found a kind of community...of people who identify with and understand each other. I mean that in the least cheesy and the most sincere way possible!

sarah-j :)

Carrie Arnold said...


No, I *do* consider you part of my community. And I'm glad it helps you.

People sharing and connecting over a common issue can be enormously healing, especially when it moves you forward and doesn't keep you stuck.

Kyla said...

I think that Something Fishy can be pretty helpful as long as the rules are followed. Good analysis of pro-ed sites. They are only feeding the illness.

hungry for hunger said...

high-five baby.

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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