Mackensie hasn't stopped smiling since the Skype call began. "Oh my god, you guys are hurting my mouth so much."

One of the girls is sharing her screen with the other three, clicking through Facebook photos of a guy at her school. "He's into Muse!" the girl says. "Like, he has good taste in music too. He's everything I aspire to bang in one." They laugh and can't stop laughing.

Mackensie attended (and spoke at) her fifth TLC conference last week — she knows these girls from past conferences and from a Facebook group for teenagers with trich. They're making plans — when to buy tickets to the conference, what day they should arrive. Mackensie wants everyone to come early.

"Then we can have a whole day together! And we can go work out, 'cause, you know, 'working out with best friends.'"

The others — all slightly older — seem to adore Mackensie, the little sister of the group, teasing and praising her at once. They talk about getting through their schools' firewalls and looking at colleges and maybe going vegan, but the conversation always finds a way back to trich — to their annoying ingrown hairs or things their therapists recently said. The conversation isn't agonizing or emotional. It's often really funny. One girl shows off her hairpieces hung with Command strips to her wall. Mackensie says she used to keep hers on a stuffed bunny.

"Weed is actually so good for pulling," one of the girls mentions — she also knits to keep her hands busy. "It's not, like, perfect, but it's probably the best thing I've tried."

For another girl, exercise and NAC (N-acetylcysteine) twice a day has been the most effective — though the pill is awful to take. When she says she’s been “pull-free” for 17 days, everyone cheers.

Dozens of articles and TV segments feature trichotillomania every year. Usually a young woman is at the center of the story, and usually the headline is something like “I pull out my own hair!” The girls read or watch all of these pieces; they know that often, the stories can come across like carnival introductions to a mystery disease. "They usually don't make it out to seem like we're normal people," one girl says on the Skype call. "They act like it controls our entire life and every single second of it. I just don't feel like that's really how it is."

Trich provides a reliable mystery narrative largely because there’s no universal treatment or cure. How could there be, with such little understanding of the disorder? There's never been a large-scale impact study to determine how many people are truly affected by trich. And because it afflicts largely young women — or at least young women are the most vocal about it — trich tends to conjure this 6-o'clock-news-ready image of an average teenage girl harboring a dark secret.

The morning after her Skype call, Mackensie is scrolling through the Facebook group for teens with trich. Someone posted an image that says "Finding friends with the same mental disorder as you: priceless." Another person in the group just messaged her for advice on how to reach out to the media. Mackensie makes a face; she doesn't really want to share the spotlight.

She's still trying to convince herself that she's not the "girl with trich," and that trich doesn't define her — and yet it's given her a platform, and an identity at an age when it's hard to find one or keep one.

"I haven't really admitted that, but yeah, it does," she says. "And it's all just 'cause it's kind of a safe thing — something about me that I know."