One of the first things I did after I was diagnosed with breast cancer was to join an on-line support group. I was diagnosed on January 15, 2008; my membership in the “community” at a certain major breast cancer website (which shall remain nameless here) dates from January 17.
I should say, first off and up front, that I found amazing support there during the period between my diagnosis and surgery, and all through my four months of chemo. I mean, really amazing. As in, collecting-my-mail-and-finding-a-surprise-package-of-post-surgical-camisoles-and-nightshirts amazing. I think I cried that day.
Up to then, my experience with on-line communities consisted mostly of a running site, letsrun.com, on which horny cross-country guys told one another how much they sucked, wily masters smacked them down, and spelling-and-grammar trolls prepared to pounce. It could be a very mean place. It was also, often, very funny. (Just thinking about certain threads – “Fanny pack in a 5K,” “Deer Kara Goucher” – still makes me giggle.)
So as much as I valued the kindness and support of this new community – and I honestly don’t know how I would have made it through treatment without it – I also chafed a bit at the constant, unremitting, niceness. Was I a horrible person for wanting just a little acidity to cut through all that sweetness? A newly-diagnosed woman would write something hysterical, making no sense whatsoever (I remember one post in particular, full of “omg’s” and misspellings and referring to chemo, I kid you not, as “tata juice”), and all I could think was, “imagine what the guys at letsrun would do with that.” Surely, someone here would offer some tough love: “Sweetheart, you need to get a grip and grow up. And for fuck’s sake, don’t call it tata juice.” But no. The warm, comforting responses would pour in, welcoming her to “the sisterhood no one wants to be a part of” and telling her that she had come to the right place. Not one word about the tata juice.
And I would feel thoroughly ashamed of myself. Still, I couldn’t shake the sense that this, too, was a form of loss. Cancer had already taken my left breast, my axillary lymph nodes, my ovarian function and my sense of invulnerability. Did I also have to give up sarcasm and bitchiness? Was I fated to a lifetime of signing notes “xoxoxo” and “gentle hugs”? (Which I still do, by the way, so I guess that’s a “yes.”)
As they say: be careful what you wish for.
The first cracks in my illusions about my new community appeared in late 2009. I was done with active treatment by then, but had been put on long-term anti-hormonal therapy, which raises its own issues. Beyond that, it felt good to be able to offer support to newbies who were where I’d been a year or so earlier. Plus, I just plain liked cyber-hanging out with the women I’d met on the site.
I knew in a general way that there had been some heated political threads on the site during the 2008 presidential election. Despite (or perhaps because of) my strong political views, I had always ignored them. I got all the politics I needed from my off-line campaign work, and then, after Obama’s victory, I found myself immersed in the challenges we all faced in those scary times, when a global depression seemed like a real possibility.
It had nothing to do with cancer – until we got to health care reform, which had everything to do with cancer.
One day, I responded to a question about access to mammograms (“does this new law mean I wouldn’t be able to have the mammogram that saved my life?”) in the kind, calm voice I’d learned to use on the site. I provided what I thought was helpful information and words of reassurance – only to be slammed in response. I was stupid; I was aiding and abetting death panels; oh, and did I mention, I was stuuuuuupid?
That was my introduction to the seamy underside of this warm, nurturing community.
It only got worse. Mean people, hateful people, dishonest people, racists, anti-Semites, Islamophobes, homophobes – they get cancer too, and suddenly, it seemed, cancer nasties were all over the site.
Now, I don’t think of myself as particularly sheltered. I’ve been screamed at in meetings, had doors slammed in my face, answered angry calls and letters – but I’d never experienced anything like this. Heck, not even my time on letsrun.com had prepared me for it. When it came to cyber-bullying, these women knew their stuff. There was the tag-team approach, in which a group of posters (or a single poster with multiple identities) affirmed and amplified one another’s words. There were stealth attacks, using the site’s anonymous “report this post” feature to have opposing comments deleted and their authors’ posting privileges limited or revoked. There was the insertion of extremist talking points into ostensibly non-political threads – so that, for example, a discussion of the concerns of breast cancer patients going through airport security became a diatribe on the TSA’s coddling of women in hijab, all because of that Kenyan Muslim in the White House. There was the cynical courting and manipulation of the scared and credulous, through poisonous private messages. There were middle-schoolish personal insults (my last name, which stretches out so satisfyingly into “ewwwwwwwwwww,” made me a favorite target). There was even a separate website – its existence was an open secret – in which insults too vile for what was, after all, a support site could be posted freely.
Other women on the site – some of whom I already knew from various threads, some of whom I was just meeting – filled me in. How this had been going on for some time. How some women had been driven away by the nasties. How the bullying had, in a few notorious instances, migrated offline and into real life.
Bitches wanted war? They got it.
And here’s where it gets a little complicated. Because, you see, my friends and I gave as good as we got. There were major differences, of course, and I don’t mean to suggest some false equivalence. We were anti-racist, we didn’t use personal insults (well, not in public, anyhow), we didn’t try to censor opposing posts, and we based our arguments on facts. And for sure, we never tried to get a woman dying from brain mets kicked off the board (something that actually happened). But:
We baited, then pounced. We ridiculed. We posted stuff needling our opponents, then deleted our posts after we were confident they’d been seen, but before they could be reported. Some of us (well, me) came to relish our status as free speech martyrs, using emails and private messages to stir up outrage over yet another vindictive restriction on our posting privileges.
It was stressful and mostly horrible, but it also gave me something I’d been missing: a rush of adrenaline.
God, how I loved to hate the haters! And how deeply and fiercely I loved my sisters in the battle!
And – dare I say this? – how much fun it all could be when it wasn’t horrible.
There was the time a particularly annoying (and prissy) poster asked what “mofo” meant, since her husband wasn’t home to explain it to her – and was thoroughly schooled on its etymology and usage. There was watching in real time as the posts of one of the nasties (who was known to enjoy her wine) became less and less coherent over the course of an evening, until her last post for the night read simply
and we pictured her passed out at her keyboard. There was the epic meltdown after our site’s hapless and incompetent moderators invited members to review the parent organization on a site called greatnonprofits.org. The ensuing flame war really took off when someone on our side discovered there was no protection against duplicate user names. And so “Greta” bemoaned her own stupidity (“I am dumb. So, so dumb.”) while the Greta’s and Realgreta’s and Reallyrealgreta’s and Reallyandtrulyrealgreta’s multiplied in a spiral of delightful chaos that had us cracking up at our computers. (I wish I could post a link, but the entire “review” was eventually taken down.)
We might be tired, middle-aged women living with cancer, but when we sat down at our keyboards we were filled with the mischievous zest and creativity of 20-something hackers. Suspend judgment, put yourself in our slippers, and imagine how that felt: it was a serious fucking high.
And so, through 2010 and 2011, I careened between momentary highs, simmering rage (the attacks, particularly on Muslim women, were getting uglier and uglier) and a growing paranoia that was not entirely unfounded – I had revealed a lot of personal information on the site over the years, and it made me queasy to know that the nasties (not all of whom were completely dumb) had access to it. I thought about leaving, but I didn’t.
Why not? I was obsessed, that’s why – and I wasn’t the only one. Several of us discovered the value of taking screenshots to document particularly offensive posts. (Document for what? We didn’t know, but we kept right on building the case for some future prosecution.) We speculated on suspicious user IDs (was this an alter-ego? whose? do you think that one really has cancer?). We researched our opponents, looking for discrepancies in their posts (ha! I knew she was lying about her daughter’s Ivy League degree) and trying to figure out their real-life identities. (Not to do anything with that knowledge, mind you . . . just to know.)
I fully realize how insane this sounds; I fully realize how insane I was. I even realized it at the time, and tried to walk away – but then I’d hear from someone else about a new outrage, and I’d run back, just to see what it was all about.
Until, eventually, I stopped. I’m still not sure why. It certainly wasn’t because of the good advice I’d been given – don’t look if it upsets you, don’t let your enemies live rent-free in your head, etc. etc. – which, however well-meant, made me snort in derision. It wasn’t a conscious decision. I just got busy with other stuff, I guess, and by the time I realized how much time had passed, so had the urge.
As evidence, I can point to my last post on the site (August 19, 2013). There’s nothing to indicate it would be my last post, except the fact that it was. I was an infrequent poster at that point, but I checked back in when one of my friends and co-combatants died of her disease; it just seemed right to share remembrances on the site where we’d met. I hung around for a few days, cyberchatting with old friends, and then, without necessarily meaning to leave (no fanfare, no announcement), I left.
Those three years when I battled the nasties are a little foggy now, the way my chemo summer is a little foggy. When I decided to write this, I went back to the site for the first time in over a year. I knew that many of the most contentious threads wouldn’t be there – they’d been taken down by the moderators during the worst of the fighting, an ineffectual effort to keep the peace that only cheered and emboldened the nasties. Recreating conversations was well-nigh impossible because of all the pale blue bars (like the one that illustrates this post), signifying a censored or self-deleted item. In addition, when the site finally announced a crackdown on multiple user IDs, several of the nasties (along with their alter-egos) abruptly left the community and deleted all their posts (numbering in the thousands in some cases).
What’s left is an incoherent jumble, but it’s enough to bring back both the bad (the heart-pounding anxiety the first time I had a post “deleted by the Community,” the sickening rage when a beloved friend was suspended from posting on the eve of her whole brain radiation, the paranoia and obsession) and the good (God, Allison was witty, and I miss her so).
I’m not sure it’s enough to answer the question that’s been bugging me as I write this: did I turn into a cancer nasty, too?
On the basis of the fragmentary and incomplete evidence, I’d say the answer is “no.” In fact, I’m surprised by how mild my tone generally was. I was guilty of occasional sarcasm and of acting (more than occasionally) like an insufferable know-it-all, but I was never really mean. Tart, maybe, but not mean.
Of course, it’s not just about what I posted publicly. What troubles me most is how much hatred I felt. I loathed the nasties, really loathed them. I was able to muster a teensy bit of condescending sympathy for some of them (it must be hard to be that stupid and scared and live such a narrowly circumscribed life), but for others – well, I didn’t actively wish for bad things to happen to them, but if something had, I wouldn’t have been particularly upset. That’s a terrible thing to say. But then I think about what they did and said (and believe me, I haven’t gone into the half of it here), and I start to equivocate: my internal jury is hung.
Someone who’s smarter – and more objective – than I am could, I’m sure, draw some interesting and broadly applicable lessons from all this: about the way on-line communities come together and fall apart, how anonymity shapes our interactions with others (and even our own identities), what it is about the Internet that transforms mild and rational people into obsessive lunatics, etc. etc.. I’ll limit myself to three fairly obvious lessons, grounded in my specific on-line cancer support group experience.
Lesson #1: Don’t worry about losing your inner bitch to cancer. Surgery doesn’t cut her out, chemo doesn’t kill her, rads don’t faze her, and – for good or ill – she’s tougher than any tumor.
Lesson #2: That sweet, pink, fluffy cloud of love that surrounds you and your breast cancer sisters when you’re first diagnosed? It’s not real. Remember that, and if you sign up for an online support group, be cautious when you create your username. Don’t be an idiot like me and use something close to your real name.
Lesson #3, related to Lesson #2: There’s no universal breast cancer sisterhood. However, if you’re lucky, you’ll find sisters.
Oh, and if you’re a troll posting mean stuff on running message boards from your parents’ basement? There’s a 50-something housewife in a wealthy Oklahoma suburb who could teach you a trick or two.
Brilliant–as usual. Happily I still count you (EW. . . .) and a few others among the amazing friends that helped me get through that time. And yes, it wasn’t that easy for me either having to make-nice all the time but I like to think that I helped someone here and there.
There’s no doubt in my mind that you did.
Wow! I’ve been on some online support groups that seemed toxic but nothing like your old group. Under all that superficial sweetness were a lot of angry women. Maybe they couldn’t let themselves say how they really felt about cancer, having to be so sweet and positive all the time, and only let their inner bitches out on non-cancer topics. Glad to hear you are out of that one.