Trichotillomania, Isolation and Anxiety: What to Do? – The New York Times

On a sunny Friday last month, 10 days into Australias coronavirus lockdown, Jayde Beaumont put her toddler daughter down for a nap, closed her bathroom door and started to shave her head.

It was a decision she had wrestled with for years, although it had little to do with how she looked. Ms. Beaumont, 27, has had trichotillomania a condition that has caused her to pull out her hair compulsively since she was 8 years old. For almost two decades, she would fall into daily trance-like states where she would systematically tug the hair from her head, strand by individual strand, a small pile forming next to her in minutes or even hours while she watched television or drove her car.

Anxiety and boredom have become common complaints in the coronavirus pandemic, triggering existing behaviors with potentially harmful effects. Ms. Beaumont said she picked up the razor after weeks of stress from frightening news headlines coupled with spare time from being cooped up inside. Although she had experimented with a range of treatments over the years, nothing had ever fully broken the cycle. Shaving her head had always felt like a last resort until now.

I just thought, What have I got to lose? Ms. Beaumont said. It is now or never. If I dont have hair on my head then I can try to train myself out of this. She recorded the moment and posted on Instagram.

I was scared but also excited, she said. Maybe if I had no hair then there would be no more irresistible pulling urges. Maybe then the relapses and shame spirals would finally go away.

There are a lot of unknowns that surround trichotillomania. Its hard to say (it is pronounced trik-o-till-o-MAY-nee-uh), and also difficult to recognize or neatly define, despite being officially classified as a disorder more than 30 years ago.

In recent years, experts have come to believe that it is caused by a combination of genetic, biological and behavioral factors. There is no one-size-fits-all diagnosis of either triggers or treatments, which can range from cognitive behavioral and habit reversal therapies to attending support groups or even trying to replace the pulling with another action like plinking an elastic band on a wrist.

Trichotillomania has never been taken seriously enough, said Dr. Fred Penzel, one of a handful of specialist psychologists in the field and the executive director of Western Suffolk Psychological Services in New York. For years it was simply seen as a bad habit or quirk and this has meant it hasnt been subject to the same research or widespread studies as many other disorders. It needs a great deal more attention and funding.

According to Dr. Penzel, studies show trichotillomania affects roughly two percent of the global population. That implies there are more than 150 million sufferers globally, who pull hair anywhere from their scalp, eyebrows and eyelashes to their body or pubic area.

I just felt so embarrassed and that no one understood, said Ms. Beaumont, who kept her pulling secret for years until balding gave her away. But no one really knew how to deal with it other than to tell me to just stop, which felt like the very thing that was out of my control.

Hair-pulling is often miscategorized as a form of obsessive-compulsive disorder, or O.C.D., a condition defined by recurring irrational thoughts and the repetitive acts that are meant to neutralize those thoughts. In fact, while they share similar characteristics, trichotillomania is a type of impulse control disorder that belongs to the behaviors group known as body-focused repetitive behaviors, or B.F.R.B.s. Unlike O.C.D. compulsions, B.F.R.B.s which include skin-picking and nail-biting as well as hair-pulling tend to feel soothing in the moment and sufferers rarely suffer from obsessional thoughts. Many describe entering a trance-like state where they arent fully aware of time or their actions when they pull or play with their hair.

Jennifer Raikes, executive director for the TLC Foundation, stressed that the true gender ratio isnt known and could be more balanced, given most men do not seek treatment or medical help. The TLC Foundation for Body-Focused Repetitive Behaviors is the most high-profile of the scientific evidence-based nonprofits committed to improving public awareness and understanding of B.F.R.B.s in everyone from medical professionals, hairdressers and teachers to parents and sufferers.

Quite honestly, nobody knows the exact answers yet to a lot of basic questions, Ms. Raikes said. Anyone who says they definitely know is probably making it up.

Sometimes trichotillomania can be triggered by a traumatic event, she said, and there was a clear interrelation in many cases between B.F.R.B.s and high levels of anxiety or depression. Just as often, however, people can be content and happy save for their compulsive habit.

The psychological and emotional toll wrought by hair pulling can be significant. While few sufferers report feeling physical pain from pulling, when repeated thousands of times it can result in everything from bleeding and skin infections to permanent hair loss and scars. Constantly hiding these consequences can also be exhausting.

Middle school was a rough time for me, said Taylor OConnor, 21, a psychology major from near Kingston, N.Y. She started pulling at her eyelashes and eyebrows when she was seven, around the time her father was given a cancer diagnosis. When she moved to a larger middle school, she pulled out most of the hair on her head while lying awake at night.

I had some good friends who stuck by me, but there was bullying too. Swimming classes were nightmares, said Ms. OConnor, who started wearing a wig daily from seventh grade.

Although sometimes uncomfortable, a wig didnt just hide her thinning hair and allow her to feel more comfortable in social situations; it prevented her pulling too. Therapy, and transitioning to college where she was able to be more open about her disorder also helped. Despite urges being strong during the lockdown, with nightly pulling sessions that hovered around the 15-minute mark it is my coping mechanism, Ms. OConnor said her natural hair had recently started to grow back. In some places it now went past her shoulders, a milestone that filled her with pride.

Its like chasing a high, said Ms. Beaumont, who estimates at her worst she pulls for four to five hours per day. As soon as I have played with what was the perfect hair, I need to start looking for the next one. Ms. OConnor added that she doesnt just pull out just any hair they have to feel coarse and out of place. Pleasure is partly found from the run-up to the pull itself. I always know when I find the right strand, she said.

Rebecca Richter, 19, a college student who lives on Long Island, N.Y., started pulling out her eyelashes as a child to make wishes on them. Soon, however, the compulsion to pull spread to her head. Lately, Ms. Richter went to the barber shop to get a shade buzzed into her pixie cut when she felt waves of temptation. But the shutdown made that impossible. So, like Ms. Beaumont, she too had shaved her head.

The pulling has always waxed and waned depending on whats going on in my life. But with all the craziness going on it just feels a little out of my control right now, she said, adding that many friends with the disorder felt the same way.

Ms. Raikes said that in recent weeks, and with many countries encouraging people to stay home for health reasons, the foundation had noted a major spike in online reports of increased pulling and picking binges, either on social media accounts or via the digital communities and forums that have flourished for hair-pullers.

Ms. Richter and Ms OConnor met as members of the TLC Young Adult Action council. To combat the recent flare up in her own symptoms, Ms. Richter said she was focused on reaching out to other trichotillomania suffers via the council network or social media. Like Ms. OConnor, she was studying psychology at college with a view to specializing on working with those with B.F.R.B.s. Both women said that being part of the TLC council, and learning to become more comfortable with openly acknowledging their disorders, had been cathartic. (Ms OConnor was on a hiatus from the council while she prepared for study abroad in the fall.)

I have gone through dark periods because of pulling, but I also have grown a lot as a person and can use what I have learned to help others. That feels particularly important right now, Ms. Richter said. Whenever she discussed the disorder with those outside the community, she added, there was often a light bulb moment; someone had an aunt, friend or neighbor who had shown symptoms. On one occasion, a girl said to Ms. Richter that she realized that she was suffering from trichotillomania herself.

Sometimes people dont seem to know they are doing it, said Ms. Richter. It goes on all around us, kind of hidden but also in plain sight.

According to Dr. Jon Grant, a professor of psychiatry at the University of Chicago who has studied B.F.R.B.s for twenty years, self-grooming is an act that connects humans to other creatures in the animal kingdom. All animals are primed to groom themselves, he said last week, with sliding scales of gratification found from the process.

There is keeping your eyebrows shaped, or plucking out a few gray or ingrown hairs. Lots of people do that. Then there are those who start and then cant stop pulling hairs compulsively, he said. Some people manage to keep control of those urges or have mild cases. But for others it can be life-altering in terms of mental health and self-esteem, with parallels to addiction.

Now, key areas of focus for researchers include what broader treatment goals should be. Should people expect to completely stop, for example, or just reduce their behaviors? Trying to establish what percentage of people respond to behavioral therapy, medication or over-the-counter remedies such as milk thistle also remain open questions. (Currently, there is no Food and Drug Administration-approved medication to treat B.F.R.B.s.) Identifying common threads is also important. Many sufferers have reported exhibiting similar habits that have strong sensory components, like favorite search areas, hunting for a specific type or texture of hair and a strange fascination with hair follicles. Still, many unanswered questions remain.

Sadly, one thing we can say is that people feeling unable to come forward has impacted our abilities to fully understand B.F.R.B.s and the amount of specialists and resources put toward tackling them, Ms. Raikes.

The TLC Foundation also organizes annual conferences in the U.S. for B.F.R.B. sufferers and their families. According to Ms. Raikes, creating new communities both on and offline has been one of the most significant steps in supporting hair-pullers of all ages. Teenagers especially appeared to benefit from meeting fellow pullers from around the world, at a time of life when many are desperate to feel like they fit in.

Based on his clinical observations, Dr. Penzel developed what he called his stimulus-regulation model, which has gained some attention. The model is rooted in the theory that hair-pulling is an attempt to regulate an internal state of sensory imbalance (which is often genetically inherited), satisfying a biological need yet proving physically destructive at the same time.

It has been my observation that people pull when they are either overstimulated due to stress or positive or negative excitement, or under-stimulated due to being bored or physically inactive and have nothing to do, he said.

With people laid off, not in school or college or just working from home, it makes sense that sufferers like Ms. Richter and Ms. Beaumont had seen a surge in their urge to pull. While both said the decision to shave their heads was unlikely to be a silver bullet, neither held regrets.

Ive spent so long feeling out of control and hiding my bald spots, said Ms Beaumont, who had tried everything from cognitive behavioral therapy to hypnotherapy and wearing a turban in a bid to stop pulling. I want people to understand more about this disorder. I want to tell them my story.

Continued here:

Trichotillomania, Isolation and Anxiety: What to Do? - The New York Times