And to be seen that way.
Ten interviews from the social margins.
About six months ago, I found myself talking to a woman who was absolutely terrified of vomiting. The 23-year-old hardly left the house, ate only a few foods, and could barely relax enough to sleep. She wasn’t the first emetophobe I’d spoken to—curiously, every one of them had grown up with a sick parent, though not necessarily one prone to vomiting—nor was she the first stranger with a strange life I spent hours in conversation with last year. For a series of intimate interviews on Science of Us, I’d found myself spelunking into the bowels of the internet, seeking out real outliers willing to talk frankly about their experiences living with radical difference—with superhuman memory; a disease causing slow loss of vision; a hormonal imbalance generating a full beard on a woman’s face. The conversations about sexuality attracted the most interest when they were published online—a “zoophile” in a long-term sexual relationship with a horse; a 58-year-old virgin. That interest is one reason we’ve included a few in this selection, which features interviews already published and new conversations with a fresh cohort of outliers. But, believe it or not, prurience is not our goal here. We’ve been publishing “What It’s Like” interviews regularly since the fall, but we also wanted to examine them altogether—to see what the project could show us when we looked at it whole.
We started “What It’s Like” as a sort of serial inquiry into the fringe of human experience—a kind of anthropology by anecdote, exploring how people with rare conditions, disorders, and proclivities actually live in a day-to-day way. Looked at one after another, though, the interviews took on a whole second cast. They were quasi-ethnographies of lives lived in unique ways, yes, and narratives revealing a range of universal themes (loneliness, abandonment, self-doubt, fear, and resilience). But they were also a study of the social ecosystem of the internet, where bullying and trolling live alongside intimacy and support and you can always find a like-minded community if you dive deep enough. Even 20 years ago, so many of these subjects would have found themselves isolated, if not shunned. But for almost everyone, the web was a kind of salvation—a place to talk to others like them and learn from them, to find confirmation, affirmation, information, and support like they got nowhere else in their lives.Keep Reading Below
“Last time I was tested, my IQ was 168, but I still have no common sense.”
Having a high IQ doesn’t mean you are going to be successful. It just means your brain works faster.
“I lost my virginity to a horse.”
Everybody else was stealing their dads’ Playboy magazines, but I had The Big Book of Horses.
“Body odor is such a taboo subject.”
I have an ammonia-like scent that comes out of my armpits and groin. My breath varies between eggs and garbage.
“I would rather face death than vomit.”
My main focus in life is to not get sick. It’s in my head every single minute of the day, especially when I’m alone.
“Why are you wasting your life sleeping?”
I get three or four hours sleep a night, and I never get tired.
“I can see up to 100 million colors.”
The grocery store and the mall are a color assault. There’s too much of everything and too much that is not naturally beautiful.
“I want to have my left leg amputated, just above the knee.”
I have an unexplainable desire to do something that most people would dread.
“When I’m asleep, I’m aware that I’m dreaming.”
My dreams leave impressions that are as strong or stronger than anything I experience when I’m awake.
For some, that private support was crucial. Which shouldn’t surprise: Many of us need the cover of shadow to find our path, to discover even those shady corners where it’s possible to live openly and honestly in manners that defy convention. Whatever we tell ourselves about the age of social media, we aren’t a dribbling mass of public oversharers: A construction worker who thought constantly about amputating his own leg with a chain saw or cement mixer waited almost 70 years before he told anyone who knew him about the thing that had most shaped his inner world for his entire life. That emetophobe let her doctors believe she was anorexic rather than explain that her fraught relationship with food had nothing to do with her weight. She was elated to find an emetophobia subgroup on Reddit. “At long last, I wasn’t alone.”
The internet was also where I found them. Before setting up interviews, which unfolded in painstaking detail often over many days, I would explore various communities and moderated groups on platforms like Yahoo. I heard people with obsessive thoughts discussing how medications designed to help them have affected their moods and creativity, describing the way their conditions often make them weep or consider suicide. On Reddit, I searched the network’s subs, where I heard people with a range of phobias, psychological conditions, and biological quirks talk about their obsessive rituals, avoidance strategies, and physical symptoms. There were many who simply shared experiences, treating the web as a raw interactive confessional. And some were out and proud, like that woman with facial hair, who has her own YouTube channel.
But, of course, the internet has many depths—it’s like an ocean that way. And the inquiry took on yet another cast when we actually published our interviews, exposing the more underground subjects to an entirely different level of attention. The experience was not always so great for them (even though we kept many of the conversations anonymous, some subjects were recognized within their communities, and we’ve included a few follow-ups in the pieces that follow). Those interviews dealing with unusual sexuality generated special vitriol and disgust—a sign that our reflex for moral outrage is still pretty strong, even in an increasingly libertine culture. And though we didn’t set out to make the interviews sympathetic, by their very nature and form (long, confessional) they became that way, which didn’t sit well with a lot of readers. Roughly half of the hundreds of commenters responding to my interview with the zoophile were repulsed—a ratio that was even higher in some other interviews. In one, I spoke with an 18-year-old who had begun dating her estranged father—a case of what’s called genetic sexual attraction, a common-enough phenomenon that it’s occasioned academic studies. (We haven’t included that interview in this selection, but you can read it and others here.) The response was enormous (the Los Angeles Review of Books called it “a national and international sensation”), much of it outraged. “ ‘Consensual incest’ is rape,” declared Samantha Allen for the Daily Beast, and on TV shows like Dr. Drew On Call, the affair was described as horrifying.
Lost in all the vitriol was the fact that however concerning most of us might find her story, in it she described herself in no uncertain terms as the happiest she’d ever been and in the best mental health. At first, after it was published, she told me she was amused by the response, insisting readers were jealous of the unique love she had found. But she had been hoping to finally come out and live in public, and when her story went viral, it prompted officials to consider rewriting the lenient incest laws in New Jersey, meaning the one state she’d seen as a sanctuary preemptively turned her away. Not to mention the vicious commentary online. “I regret this so much,” she told me during an emotional late-night chat.
The 42-year-old man who is in love with a horse (which is included here) experienced his first panic attack when the interview went live, despite the fact that he has blogged about his experience and discussed it online for years (his interactions read like a microhistory of social networking, stretching back to the 1980s on BBSs and then Usenet groups such as alt.sex.bestiality). “It was my life story all in one place, and I had never seen that before,” he told me. After calming down, he followed up to let me know how well his interview was received by the zoophile community. “There are those who think I should have kept my mouth closed, but mostly the reaction has been very positive. There is some talk of sending flowers, but I suggested a basket of toy animals might be more appropriate.” Sure enough, a few months later, I received a horse-themed hamper and a neatly handwritten card, thanking me for “objectively reporting a zoosexual relationship.” For him, the exposure was worth it.
*This article appears in the February 23, 2015 issue of New York Magazine.