“Welcome. You’ve got mail.”: Recalling the early days of online support forums

I met my best friend (K) online. We “met” on an eating disorder-specific message board in late 2008. About a month into our friendship we were already corresponding on a daily basis, through emails, texts, and phone calls. We didn’t meet in person until nearly four years later when she came to stay with me for five days shortly after I moved to Los Angeles. We were scared it might be weird, but it really wasn’t. Today, seven and a half years later, she remains one of my closest and most loyal friends.

I used to be afraid to tell people how we actually met. I even lied to some people and told them we met at gymnastics camp or at a treatment center. Both of these were actually plausible as we were both into gymnastics as kids and we both had been to some of the same treatment centers, although never at the same time. I was afraid that if I was honest about having her met online, especially on an eating disorder site, people would get the wrong idea. You’ve probably heard about the “pro anorexia” movement and their large presence online. I was never into any of that, and neither was K. Still, people hear “online” and “eating disorder” and assume you must be talking about some graphic pro-ana site where you drool over emaciated pictures and trade tips on how to lose 15 lbs in 3 days. To people with actual eating disorders, this assumption is pretty insulting. I know others may disagree, but I don’t consider those people to have real eating disorders. They’re struggling with something, surely, but that something is usually completely unlike what I and most others like me have struggled with. I don’t want to give too much attention to this topic because it’s pretty irrelevant to what this blog is about. Anorexia is not a “lifestyle” that anyone should strive for and people who treat it as such are doing everyone a disservice by perpetuating ridiculous stereotypes.

Moving on… I’m no longer ashamed to admit where I met K. I wanted to write about my many positive experiences with online connections and support because so much of the talk around this topic is about the negatives. The truth is, the online world is a completely different beast than it was 15-20 years ago. Both K and I agree that what so many people with eating disorders do online today in the name of “support” is not at all conducive to real recovery, and is in many cases harmful. I’m not talking about pro-ED forums. I’m talking about the ever-expanding “recovery community” that exists on sites like Tumblr, Instagram, and to a lesser degree, Facebook. I want to keep the focus of this blog on the positives of online support, so I’ll save my discussion of the current Tumblr/Instagram situation for a future entry.

My first encounter with eating disorders on the internet was in late 1997 when I was 13. One of my teachers had recently picked up on my eating disorder and turned me into the school nurse, who then got the school psychologist and my parents involved. It was not a fun time for anyone. I had been secretly dealing with stuff for a while, but this was the first time it was “exposed” and people were labeling it as anorexia, or an eating disorder. That alone scared the shit out of me. I knew what anorexia was and I was convinced that was not what I had. I was nothing like the girls in the Lifetime movies about eating disorders. I didn’t start losing weight to look good in my prom dress or to impress a guy. I didn’t eat 3 sticks of celery a day or faint dramatically after a run. That was not me.

I knew there was something weird/wrong about me though, so I started doing my own investigating. This was before Google, but I managed to find quite a few resources, such as the AOL “support forums” dedicated to eating disorders. Yes, AOL; this was 1997. It wasn’t long before I realized how many people out there were dealing with very similar struggles. There was a close-knit group of “regulars” who I quickly got to know well. We were girls, women, and men of all ages from around the world, but we had no problem relating on the level of our shared struggles. I started waking up early so I could “check the boards” before school and more often than not I’d go straight to the computer after school and spend several hours catching up. Some would call this isolating, and yes, it kind of was, but consider that before this I would spend this time completely alone and depressed in my room. The few friends I had from school were not people I could talk to about this, and I never wanted to burden my parents. I started seeing a therapist but it was years before I trusted her enough to really let her know what was going on. My “boardies” as we so cheesily called each other, were my biggest confidants.

AOL

The following summer I went to a routine doctor’s appointment only to be told I was being admitted to an inpatient facility that very night. They gave me an hour to go home and pack my bags. To say I was terrified would be an understatement. This would be my first encounter with out-of-home treatment and all I could think about were the horror stories I heard from my friends online about these places. “If you refuse to eat, they’ll put a tube up your nose and feed you high-calorie liquids all day. They want to make you fat. You can’t do anything unsupervised, even take a shower or go the bathroom.” This was my absolute worst nightmare; I begged everyone to give me one more chance and not make me go to such a prison.

Once I realized it was a done deal I knew I had to “check my boards” one last time before leaving. As soon as I got home I threw a bunch of clothes and (unbeknownst to me at the time) contraband in a bag and ran down to the family computer. Lucky for me, one of my closest “boardies” was on good old ICQ, which was a super old-school instant messaging system for all you youngin’s reading this. I told her what was happening and she assured me it would be okay. She told me not to believe all the horror stories about treatment; it wasn’t all that bad. Maybe I’d even get something out of it. And hey, I was finally going to have “permission” to eat! I made it through that first admission, I believe, partly thanks to the support I knew I had back home via my snail speed dial-up.

Through the years the forums themselves came and went, but I continued to find similar online support. The longest stretch of time I continued visiting any particular forum was from about 2004 to the very recent present. Many of the people I met on this board became close friends, including K, the person I consistently refer to as my best friend. I gradually stopped visiting this board over the past year or so, mostly because I found it had changed greatly from the board I originally fell in love with. Even without regular visits to the actual forum, I still remain connected to many of the people I met on this board. I actually have plans to meet up (for the first time in-person) with a long-time friend from this forum soon, as she happens to be in town.

I won’t pretend my experiences with these forums were always 100% positive. There was the inevitable competition and drama you find in any group of disordered individuals. There were the compulsive liars, the manipulators, the bullies. We also witnessed the unfortunate deaths of many; that’s what happens in a community of 900 people with eating disorders and other mental health issues. However, none of this was any different than what I would have experienced had I known these people “in real life.” That’s what a lot of people don’t seem to understand. The way we conversed online in these contexts was completely different from how people converse online today. Today people do nearly everything from their smartphones. We’re connected 24/7 and it’s not uncommon to be replying to emails in the car, in line at the store, or even while simultaneously holding several other conversations. We’re not just sending each other words but pictures and videos, often highly edited to ensure everyone sees us in our very best light.

“Back in the day,” I remember staying up until 3 and 4 in the morning on my clunky laptop having in-depth conversations with people. We didn’t have constant internet access that followed us everywhere we went. Connecting to others through this channel was a truly special and treasured thing. I got to know people online better than I knew most of my day-to-day acquaintances from school, work, or other “real life” places. I may never have met 80% of them in-person, but they were my core lifeline over many years of depression, hopelessness, and interspersed crises.

These days, most of my interaction with people is through “real-life” scenarios. I’m thankful for that because it means I’ve finally built a life for myself outside of my disorder. I no longer have to rely on secret online forums to be validated, understood, and engaged. This wasn’t always the case though, and I will never forget “where I came from” and all of the good that came from those avenues of support.

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