Christina Pearson was 14 years old when she started pulling out her hair, creating bald patches on her head. She was taken to a psychiatrist, but in 1970 there was no name for her disorder, and certainly no treatment. The doctor issued a psychiatric discharge that removed Pearson from high school. At first, she felt relief. At school she had lived in dread that somebody might pull off her hat and reveal that her head was mostly bare – a possibility she found “so frightening that anything was better than that”.

In the ensuing months Pearson holed up at home, pulling out her hair and feeling, she told me, like a monster. Scared and searching for relief, she eventually decided to leave. “I hitchhiked across Mexico at 14 and was doing peyote out in the desert, all kinds of things,” she said. “I really lived a very fringe life.” At 15, she started picking her skin, until her body was covered with open sores. By 20, she was addicted to drugs and alcohol.

At the age of 30, Pearson finally got sober and started a business with a friend in Santa Cruz, California. In 1989, she received a phone call from her mother, who had just listened to a story on the radio about a study published in the New England Journal of Medicine. “There’s a name for what you used to do,” Pearson’s mother told her, not knowing that Pearson still pulled her hair. The news that there was a name for her condition – trichotillomania – was immense.

After decades of shame and isolation, she began to feel hope: it turned out there were others living with the same condition. Pearson launched a support group and appeared on a Seattle news network, where she spoke about her life and gave her own phone number as a trichotillomania hotline.

By the time she got home she had over 600 messages.

“People were crying and sobbing and begging for help,” said Pearson, who spent a week calling each person back. “It was the best therapy I ever had, because I heard my life coming out of other people’s mouths.”

One night Pearson made the decision to walk away from her business and devote her life to improving awareness of trichotillomania. “I was scared shitless. I’m a drug addict, I’m a small-business person, I’m in sobriety, I have an eighth-grade education, and I’m going to get out there and change the world and some weird pathological disorder?” said Pearson. “I was terrified.”

Step into any classroom or coffee shop and the odds are that at least one person in the room has a body-focused repetitive behaviour (BFRB), such as trichotillomania or skin-picking disorder. People with this disorder perform repetitive self-grooming activities such as picking, pulling or biting. These can cause emotional distress and damage to the body, but the people doing them can’t stop.

At their most extreme, these conditions are life-threatening. A significant minority of people with trichotillomania (commonly called “trich”) swallow their hair. Over time, it can block the intestine and require surgical removal. Skin-picking can lead to infections that require treatment with intravenous antibiotics or skin grafts.

These conditions take an emotional and social toll. They often begin in late childhood or early adolescence, while children are at school and vulnerable to bullies. One sufferer now in his late 20s found school an “absolute hell” because his classmates saw him as “the weird kid with missing eyelashes”. Another woman, now 30, recalled watching her classmates play catch with the wig they had snatched off her head.

Picking and hair-pulling are often a source of conflict between child and parent, which can heighten a child’s feelings of shame and isolation. In adults the condition can lead to fear of intimacy, missed job interviews, and hours lost each day to picking and pulling.

People living with the condition often keep it a secret, hiding the physical effects with makeup, wigs and layers of clothing. As a result, many are surprised to learn just how common these disorders are. Some experts estimate that 2-5% of people have trich, and roughly 5% of people have skin-picking disorder, also referred to as dermatillomania or excoriation disorder. Precise numbers are not available because there has been no large-scale global study.

Although trich has appeared in the medical literature for over a century, in the US it was not included in the DSM (the Diagnostic and Statistical Manual of Mental Disorders, the official classification guide published by the American Psychiatric Association) until 1987 – a full 17 years after Pearson made her first visit to a psychiatrist, and six years after I entered elementary school and started pulling my hair.

Facebook Twitter Pinterest Some experts estimate that 2-5% of people have trichotillomania. Photograph: Lucinda Ellery/Rex/Shutterstock

My mother took me to a dermatologist, who did not offer any advice. As it turned out, I was part of a subset of kids – including toddlers and even babies – whose symptoms simply go away without any kind of treatment. By the end of the school year, my hair-pulling had stopped. But for most individuals, the condition is chronic, lasting years, or even decades.

Skin-picking disorder was added to the DSM in 2013. “We were ecstatic when it was given its own diagnostic label,” said Nancy Keuthen, director of the Trichotillomania Clinic and Research Unit at Massachusetts General hospital. An official label validates people’s experiences and encourages them to seek treatment. In the absence of a name, Keuthen said, the tendency had been to think: “I don’t know anybody else who has this, I must be really weird”.

Now both are included in the chapter on obsessive–compulsive and related disorders. On the surface, OCD and body-focused repetitive behaviour (BFRB) share similar characteristics: both involve strong urges towards repetitive behaviours. But unlike some compulsions, picking and pulling are soothing, even pleasurable. This distinction matters because the conditions benefit from different kinds of behavioural therapies; and whereas medication is a first-line treatment for OCD in the US, for example, there currently is no BFRB treatment approved by the US Food and Drug Administration.

In fact, compared with better-known psychiatric conditions, BFRBs remain markedly underresearched. “Historically, there has been almost no funding for these disorders,” said Keuthen. Funding usually goes to conditions that are seen as significantly affecting quality of life, or that make it difficult to function in the workplace. Although BFRBs can do both, they have been misunderstood as “bad habits that lazy people have”, Keuthen explained. This obscures the critical distinction between ordinary self-grooming (who doesn’t occasionally pick a scab or pluck a hair?) and a clinical case in which the behaviour goes on and on, causing distress or impairment, while the person feels wholly unable to stop.

Christina Pearson founded the Trichotillomania Learning Center (since renamed the TLC Foundation for Body-Focused Repetitive Behaviours) in 1991. Her goal was to help people, especially children, avoid the fear and secrecy she had lived with for so long. She wanted to offer authoritative information that could help people. There was just one problem: that information didn’t exist.

There was also a powerful stigma. At least some of this can be traced back to the medical literature of the 1950s and 60s, which tended to blame the parents, particularly mothers, of people who pulled their hair.

One report from that period examined 11 children with trich. The authors, who were professionals at the US National Institute of Mental Health, concluded that the children’s behaviour stemmed from intense conflict “between the child and the original love object, the mother”. The children, they wrote, pulled their hair “with large amounts of libido” and used hair-pulling as a substitute for an emotionally unavailable mother.

About the fathers, they wrote: “[They] can best be described as passive-aggressive individuals, mostly of a passive type who were persistently controlled by their spouses.”

When Pearson was taken for treatment, the psychiatrist asked her mother: “What are you doing to [your daughter]?” The question made her mother cry. “It was not good. It was very shaming,” Pearson told me.

This judgment and blame continued even after trichotillomania got its official diagnosis and was added to the DSM. Pearson began renting booths at medical conferences. In the early years, psychologists would walk by and make fun of her, pulling their own hair. One dermatologist warned her that people who pick their skin and pull their hair are “often psychotic”. She recalled one young man who had been told by a mental health professional that pulling out his hair was like public masturbation.

Something else that contributed to the misunderstanding was that trich was considered an exceedingly rare disorder. The first prevalence study wasn’t published until 1991, when the DSM criteria for trich were more stringent than they are today. To be counted as having trich, in addition to having a strong impulse to pull hair resulting in hair loss, individuals needed to experience tension prior to pulling and “gratification or relief” while pulling.

In 1990, Pearson attended one of the first professional talks about trichotillomania, given by the psychologist Charles Mansueto. At the event, she met a number of interested clinicians, including Carol Novak, a psychiatrist from Minnesota who had written a pamphlet about trich.

“Back in those days, we had no internet. Nobody knew the word trichotillomania,” said Novak, who went on to become the founding director of the TLC Foundation’s scientific advisory board. Around that time, Novak, Mansueto and Richard O’Sullivan, a psychiatrist who currently practises in Connecticut, attended a retreat Pearson had organised for people with trich. Novak recalled the participants expressing frustration and anger with the mental health field “because they had been so mistreated by professionals”. Soon after, more professionals agreed to join the board and conduct research in the field.

The causes of body-focused repetitive behaviours are still poorly understood, though individuals’ responses to different medications may provide clues to their biological underpinnings. Two small randomised controlled trials testing N-acetylcysteine (NAC), an amino acid that can be purchased in health food shops, resulted in marked reductions in both hair-pulling and skin-picking for roughly half of the participants (though some receiving placebo also showed improvements – 16% demonstrating reduced hair-pulling, 19% reduced skin-picking). NAC influences glutamate, a neurotransmitter involved in reward pathways. A small neuroimaging study also showed impairment of reward pathways in people with trich, but larger studies are needed to confirm these findings.

One study currently under way is the BFRB Precision Medicine Initiative, which has been funded by TLC donors. It is taking place at the Semel Institute for Neuroscience and Human Behavior at the University of California, Los Angeles, the University of Chicago Medicine, and Massachusetts General hospital, an affiliate of Harvard Medical School. The goal is to test up to 300 participants using a variety of methods, including interviews, imaging and bloodwork.

Nancy Keuthen at Massachusetts General noted that researchers have tended to study BFRBs in narrow slices – a small brain-imaging study, for instance. While this approach could uncover an interesting abnormality, it isn’t especially helpful without a broader network of data to illuminate causes and effects. Additionally, larger sample sizes are needed to ensure that study results can be generalised to a wider population.

A pair of studies published in 2017 and 2018 were the first to report that individuals with BFRBs have higher rates of sensory over-responsivity to external sensations than the general population. In other words, they respond intensely to things like sounds and textures. The phenomenon – also referred to as sensory integration dysfunction or sensory processing disorder – was first described in the 1970s by the occupational therapist Jean Ayres. Since then, sensory over-responsivity has been most frequently studied in association with autism, and more recently in OCD.

One of the studies found that people with trich were twice as likely to have severe to extreme sensory over-responsivity to touch and sound. One participant described her struggle with clothing: “My tactile discomfort lies in how I feel in clothes. They always feel too tight and uncomfortable as soon as I step out of the house. For this reason, I only go out when absolutely necessary – school or work.”

In the early 2000s, the psychologist Fred Penzel introduced the stimulus-regulation model of trichotillomania, based on his work with patients. “It would appear that pulling might be an external attempt on the part of a genetically prone individual to regulate an internal state of sensory imbalance,” he wrote.

According to this model, a person with a BFRB is exposed to the same levels of environmental stimulation as others, but their nervous system is unable to easily manage it. “It is as if the person is standing in the centre of a seesaw, or on a high-wire, with over-stimulation on one side, and under-stimulation on the other, and must lean in either direction (by pulling) at different times, to remain balanced,” he wrote.

“Picking or pulling adds or subtracts stimulation,” said Karen Pickett, an Ohio-based therapist. “I have yet to find someone to whom this [model] doesn’t apply to some degree.” Why does this matter? Because the picking and pulling serve a purpose. This is why the behaviours can be so difficult to stop.

A number of studies have found that some people with BFRBs have difficulty regulating their emotions. A 2013 review notes that as a group, people with BFRBs have higher rates of psychiatric conditions such as depression and anxiety than the general population. In addition, many report that their pulling and picking provides relief from boredom, tension, anxiety and frustration.

On a Saturday in April, I attended the 25th annual TLC conference for BFRBs, in San Francisco. The conference is just one of the ways that TLC aims to help people directly. It was attended by around 500 people, including individuals with BFRBs, their families, clinicians and researchers.

One woman who struggles with high-pitched sounds told me: “I used to throw things at my brother, who was just regularly playing. I’d throw books at him because noises were too much.”

Several of the people I interviewed told me their BFRBs started during a period of negative emotion. Aneela Idnani started pulling her eyebrows and eyelashes as an adolescent, after moving to a new town where she felt like an outsider and was bullied at school. A couple of years later, Idnani’s father died of cancer. “I didn’t know how to deal with it,” she said. “[As a society] we don’t talk about uncomfortable things, and so we have to find ways to deal with them.” She hid her condition as she moved into adulthood. Three years ago, she started seeing a psychologist, who helped her understand some of her emotions.

Haley O’Sullivan started picking her skin at the age of 20, a year after a traumatic sexual experience. “It started with two hours in the mirror picking at ingrown hairs, like on my armpits or my bikini line,” she recalled. “It was also picking at zits on my face and other places on my body.” For several years, O’Sullivan led a support group in Boston, and she is working on starting a group in New Hampshire, where she lives. She was careful to point out that not everyone with a BFRB has experienced trauma. In her case, however, skin-picking is “my body’s way of trying to say, ‘Hey, I’m not OK.’” Skin-picking creates a positive sensation for her in the short term, but “obviously it doesn’t feel good emotionally afterwards when you’re like, ‘Oh man, look at this damage I caused.’”

Facebook Twitter Pinterest For many people, picking and pulling serve a purpose – this is why it can be so difficult to stop Photograph: Alamy

O’Sullivan has seen several therapists and been successfully treated for post-traumatic stress disorder and depression. But she said she feels stuck with BFRBs. She has done a lot of research but lacks access to a specialised clinician. There simply aren’t enough therapists with expertise. Once you find a clinician, they may have a long waiting list, and health insurance might only cover a handful of sessions.

Marta Isibor, a graduate student from Scotland, sought help for her own skin-picking disorder in her late 20s. The UK lacks specialist clinics and expert BFRB researchers, said Isibor. After publishing a study on skin-picking disorder as a mature student, Isibor travelled the UK presenting posters at conferences run by the Royal Medical Society and the British Psychological Society, among others. Most of those present had never even heard of BFRBs, she said. It is still a very isolating condition.

“You come to a place like this [the conference], and you’re finally with people who understand,” O’Sullivan said. “But you still can’t escape the fact that once you leave here, people don’t know what it is you have.”

Currently, the treatment for BFRBs that shows the best results is a type of cognitive behavioural therapy called habit-reversal training, developed in the 1970s as a treatment for tics. During this therapy, a person learns to recognise the context in which pulling or picking is most likely to occur. With this awareness, people can then plan to substitute a competing response. For example, when faced with an urge to pick, someone might instead make a fist, or play with a fidget toy. In some studies, more than half of adults with trich achieve short-term improvement. However, some find it difficult to maintain the results over time.

The Florida-based psychologist Omar Rahman recently conducted a promising study of habit-reversal training in children with trich. He says that the goal of the therapy is to give the brain an opportunity to become habituated to the urge, meaning you can ignore it or respond with a substitute behaviour. Over the years, Rahman has come to believe that there is no real way around this if you can’t learn to manage the urge, which may explain why habit-reversal training doesn’t help everyone, or why improvement doesn’t always last.

For this reason, researchers and clinicians have increasingly sought to augment habit-reversal training with other means of helping people with their urges. For example, mindfulness-based strategies can help a person observe and accept negative emotions, sensations and urges without needing to act on them by pulling or picking.

Christina Pearson stumbled into mindfulness in the early 1990s after a series of therapists and medications were unable to help her. She started paying attention to her sensations, observing her thoughts, feelings and muscle movements.

Around this time, the psychologist Charles Mansueto had been seeing BFRB clients and developed the Comprehensive Model for Behavioural Treatment (ComB). This model recognises that a variety of triggers may cause someone to want to pick or pull: thoughts, emotions, sensory experiences, specific body movements (such as stroking one’s hair) and environment. Today, Mansueto and his colleagues are in the process of running a randomised controlled trial to test the approach.

Bridget Perez and her 19-year-old daughter Gessie were leading a conference session for parents and children. They were both wearing T-shirts designed by Gessie that said “Trichster” on the front. The room was packed.

“We may seem like we have it together now, but we haven’t always,” said Bridget.

She recalled 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.” 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,” said Bridget.

Like many parents, her first response was to want to fix the problem, and so she looked online for information. They attended their first TLC conference several years ago. “I realised it’s not about the hair,” said Bridget. “It’s about being there for your children. Supporting them, loving them, no matter what they look like.”

Gessie agreed that 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,” offered her mother.

After the first conference, Gessie shared her story on social media. Since then, people from all over the world have reached out to ask questions and offer support.

For all the obvious good that the TLC conference does, it can be a difficult experience, especially for first-timers. One mother described her first time attending as overwhelming. “I cried a lot,” she said. “You think you’re going to come and fix it, and then you realise you’re in it for the long haul.”

And that long haul is not clearly mapped. Parents may feel torn about how much financial and emotional energy to invest in treatment, or whether to accept the condition and support 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, a support group that uses the same literature and spiritual tools as Alcoholics Anonymous. In the three months since she joined, she said, “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, which is an important part of the TLC Foundation’s message.

“Maybe that’s why I’m having success,” she said, “because I’m hitting all these things.”

This is an edited version of an article first published by Wellcome on Mosaic, and republished here under a Creative Commons licence. Sign up to the Mosaic newsletter here

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