© William Bunce and Lisa Jahovic for Mosaic

“We may seem like we have it together now, but we haven’t always,” says Bridget Perez. She and her 19-year-old daughter Gessie are leading a conference session titled ‘Parent/Child Journey: Building a relationship and finding acceptance’. They’re both wearing T-shirts that Gessie designed that say “Trichster” on the front. The room is packed.

Bridget recalls one morning when Gessie was 14 and sitting at the table eating breakfast. “I’m standing over her, and I go, ‘Oh my God!’, because there was a huge bald spot in the back of her head.” Gessie had always had very long curly hair. But over the ensuing years, she went from a “gorgeous long-curly-haired girl to having bald spots, to hiding the bald spots, to the hair thinning out and just kind of hanging.”

“I screamed, I cried. I yelled. I mourned the loss of her hair,” says Bridget. Like many parents, her first response was to want to fix the problem.

Unlike an earlier generation of parents, Bridget knew the word trichotillomania and was able to use the internet to find out information. They attended their first TLC conference several years ago, says Bridget. She realised: “It’s not about the hair. It’s about being there for your children. Supporting them, loving them, no matter what they look like.”

Gessie agrees the first conference was life-changing. Living with trich had been hard. Even today, she has no eyebrows and keeps her hair short, but she considers herself in recovery “because trich doesn’t control my life any more”. The pulling comes and goes, but she doesn’t focus on stopping.

“For me, cutting my hair, shaving my head, realising that I’m not defined by my appearance was…”

“Was pivotal,” offers her mother.

They both agree that trich has made them stronger, individually and together.

Gessie says that after the first conference, she used social media to share her story. People from all over the world have reached out to ask her questions and offer their support.

“I can honestly say that I am thankful for this journey,” she says. “These friends are so much better than having hair.”

For all the obvious good that the TLC conference does, it’s important to note that it isn’t necessarily easy to attend, especially for first-timers. One mother I spoke with described her first conference as overwhelming. “I cried a lot,” she says. “You think you’re going to come and fix it, and then you realise that you’re in it for the long haul.”

And that long haul is not clearly mapped. After all, when children are sick, you take them to a doctor. But when your child is performing an unusual yet soothing behaviour that lacks a simple cure, the choice of how to move forward is not clear cut. Parents may feel torn about how much financial and emotional energy to invest in treatment compared to accepting the condition and supporting their child in other ways.

These tensions can play out in adults, too.

For example, many people with BFRBs say that complete abstinence from picking or pulling is an unhelpful goal that may magnify self-criticism and frustration. Yet, one woman spoke positively about her experiences in Hair Pullers Anonymous, based on Alcoholics Anonymous. “We celebrate abstinence. Just think of any AA programme,” she says. They use the same literature and spiritual tools. She joined the support group in January and says in the three months since that, “My hair pulling is down so much – you wouldn’t even believe it.” She has a sponsor she can call if she feels like she wants to pull her hair. And she’s also working on self-care, a big emphasis of TLC. “Maybe that’s why I’m having success,” she speculates, “because I’m hitting all these things.”

At the conference, the last session I go to is ‘Standing Tall in Our Awesomeness’. It’s led by Christina Pearson, who left TLC in 2013 and founded the Heart and Soul Academy in 2014. Roughly 20 kids are sitting in chairs in a horseshoe shape. I take a seat next to the girl with the Maple Leafs sweatshirt. She’s here, along with the rest of the kids from the charcoal drawing session as well as others up to the age of 14.

Pearson comes in with a pink fascinator atop her head, holding feathery string puppets. “I’m the lady who grew up just like you, and I started TLC,” she says. She greets each child individually.

Then she asks each kid what they liked most about the conference. Among the most common answers: making friends, everything, all of it. To one girl, whom Pearson seems to have spoken with before, she says, “You have a huge heart and a sensitive nervous system.” The girl appears to be holding back tears.

Next, Pearson pulls out a ribbon, gives the end to a child at the front of the horseshoe, then asks her to hold it and pass the rest around.

“Feel the ribbon in your hands. It is connected to each one of you.” I close my eyes. The ribbon is smooth. I’m thinking of the girl in the Maple Leafs sweatshirt, just a bit older than I was when I started pulling. Unexpectedly, I find myself holding back tears.

Pearson leads us up out of our chairs, towards the door: “This is your world,” she says, as we leave the conference room. I’m walking, holding on to the ribbon, surrounded on either side by kids who are three-quarters my height. Surrounded by kids in hats, with bald heads, kids who pick their skin. We walk out through the hotel lobby, past the people dining and reading. And outside the hotel, to a startling view of the San Francisco Bay.

Pearson turns her back to the water to face us. The sun is slowly climbing. Planes are taking off from the nearby airport. She asks us to stand on the earth. Then she asks us to wiggle our bodies. “Close your eyes. What do you smell?” Then we do a wiggle again: “What do you hear?” We can do this any time, she tells us. Baby steps toward mindfulness.

Once we’re back in the room, Pearson asks the kids to write something that they like about themselves on a triangle of felt. Each goes around and says something.

One says, “Compassion.”

Pearson: “We develop incredibly deep compassion. Why? Because we know what it’s like to suffer. We know what it’s like to be different. And we can see that in other people.”

They start gluing sequins, puffy hearts, strips of ribbon on to their pennants.

Persistent. Wild. Compassionate. Brave.

“Here’s the thing about bravery,” says Pearson. “It doesn’t mean you’re not scared. It means you do something anyway."

In the UK and Republic of Ireland, the Samaritans can be contacted on 116 123. In the USA, the National Suicide Prevention Lifeline is 1-800-273-TALK.

Want to know more? Our brand-new briefing on BFRBs and more hand-selects the best links for further reading.