A teen’s battle with trichotillomania, a hair-pulling disorder, reveals compelling truths about shame, mental health, masking emotions, and the pathway to recovery.
Shame. Unfortunately, it’s one of the most potent side effects for anyone struggling with their emotional wellbeing. A number of factors may tempt individuals to give into this shame and cover up the problems they may be facing.
But what happens when the struggle can’t be hidden, or masked? What happens when everyone knows what you’re going through? And what if those people don’t understand mental health?
To answer these questions, Darby Allen, a high school student from southwest Missouri, bears her scars for all to see. Over the past four years, Allen has endured a long and arduous battle with trichotillomania, or hair-pulling disorder. In conjunction with tips and insights from doctors and professionals, she shares her perspective on living with a struggle that can’t be hidden.
- What is trichotillomania?
- Coping with a struggle that can’t be hidden
- “Beating” trichotillomania
- The importance of a strong support system
What is trichotillomania?
“Trichotillomania is when you have these really strong, almost impossible-to-fight urges to pull out your own hair, a lot of times from your head but sometimes from your eyebrows, eyelashes, or anywhere you have hair,” Allen shares.
Trichotillomania, sometimes shortened to “trich,” is a body-focused repetitive behavior (BFRB). While most people associate the diagnosis with hair pulling, it can also manifest as skin picking, nail biting, or other similar behaviors.
Dr. Raymund Tan, a psychiatrist who regularly treats adolescents with “trich,” adds that trichotillomania belongs to the category of impulse-control disorders. Dr. Tan notes that trich often has a high comorbidity with issues like anxiety, depression, and OCD. Most of us have bitten our nails now and again, but intensity and continuation of the behavior help differentiate a mild nervous habit from the bona fide disorder.
Why pull out your own hair?
People often ask Darby Allen and others battling trich to explain the appeal. Why pull out your own hair? On the neurological level, no one knows for certain what causes the impulse. Dr. Tan notes that some research suggests that genetic factors may play a role, while other studies have found a “change in gray matter densities that correlates with behavioral control.”
Allen stated that she finds the sensation pleasurable, but also that it offers some kind of relief when she is upset or anxious. This relief, however, is often short-lived.
“When I’m sad or anxious, I get more urges to pull. Consequently, when I pull, I get anxious and sad, because I’m thinking, ‘Oh no, everyone is going to see this’ or ‘Oh no, I just pulled and that’s a defeat,’” Allen said.
Certainly a vicious cycle to break out of, it can be surprisingly easy to begin pulling your hair or picking your skin. For Allen, the compulsion started small. When she was twelve years old, she accidentally pulled out a hair while satisfying an itch on her head.
“I thought, ‘Oh, that feels good,’ and so I kept doing it. Then eventually I got a bald spot, and I was like ‘Okay, this is a problem.’”
Allen, now sixteen, has fought trichotillomania for one-fourth of her life. She has learned, through many peaks and troughs, to grapple with trich’s self-oriented and public nature.
Coping with a struggle that can’t be hidden
Trichotillomania involves an uncontrollable self-focused behavior, directed at a highly visible body part. Publicly visible struggles like this can thoroughly perplex anyone, especially children and teenagers.
“I was definitely ashamed at first because… even though it wasn’t my fault, it was something I was doing to myself. And maybe I believed that it was my fault, that I was doing all of this,” Allen said.
In addition, unlike some issues that have a high comorbidity with trichotillomania, such as anxiety or depression, trich often demands to be suffered in public. As Allen noted above, the knowledge that everyone will see what she has done only worsens the humiliation she already feels after pulling.
“People still stare at me in public, and it’s degrading,” Allen said.
While navigating the highs and lows of middle and high school, Allen has weathered the cycles of her trichotillomania all in the public eye, when many members of the public lack understanding of this syndrome. If she enjoys a few months without pulling much, Allen’s hair grows thick and curly. After rough patches, however, she has approached complete baldness.
While grueling enough to handle in private, those in her community have witnessed this cycling, magnifying every development and the shame that accompanies it. In Allen’s situation, masking her struggle isn’t possible in the way that others might mask their depression or anxiety, for example.
Small town stigma
The public nature of Allen’s ailment forced her to speak up about her mental health struggles, something people living in small communities have historically found difficult to do. Masking is highly valued in these communities, while sharing struggles feels especially difficult. C. J. Davis, CEO of Burrell Behavioral Health in Springfield, Missouri, diagnoses the root of this issue.
“Rural areas are proud areas,” Davis said. “They are often more private. They don’t necessarily want to talk about what’s going on in their families. Family is sacred, and family secrets are sacred.”
A stigma or shame often surrounds the discussion of these traditionally private issues, along with a fear that one may appear weak or vulnerable by seeking mental healthcare. “As a parent, specifically in rural areas, you will take your kid for a physical every year. But how many times will you go get a checkup from the neck up, with a local psychiatrist or counselor? It hardly ever happens,” Davis shared.
Forced to talk about it
The cultural environment in many smaller communities facilitates the impulse to mask one’s struggles, but complicates the actual ability to do so. This community attitude provided the backdrop for the beginning of Allen’s battle with trichotillomania.
Without the option to keep her struggle a secret, she had to reckon with this damaging mindset and serve as the educator for her peers, all at the ripe age of twelve. “Being from a small town, not many people know what trich is,” Allen says. “I didn’t even know what it was until I had it.”
Though there were many topics she would rather discuss in the school hallways, she defined trichotillomania to those around her and explained her troubles over and over.
“People have asked me if I’m on drugs or have cancer,” Allen recounts. “Maybe I would have gotten these kinds of questions anywhere I lived, but it’s difficult to be different in a small town.”
The privacy of wigs — a matter of trial and error
Around two years into her struggle with trich, Allen decided to take “the wig route.” She wanted something that would not only cover the bald spots she had accumulated, but help her fight the urge to pull.
Many people with trich wear traditional wigs, often to mask their struggle. Allen, however, knew she would continue to pull alone or at night, when the wig came off. Thus, the hairpiece would only serve to cover up her bald spots, but would do nothing to help them go away. This prompted her to search for a different kind of wig.
With the aid of her parents, Allen discovered a salon that pioneered a hair system designed to help women with trich combat pulling and regrow their natural hair in the process. Their unique wig provided a mesh covering over the natural hair, prohibiting the wearer from being able to pull.
“It did make me feel better,” Allen said. “It felt refreshing almost — a new do. To go from being almost completely bald to having a full head of hair that I can’t pull out. It was nice, but it also had its downsides.”
After four months of using this hair system, the Allen family decided to discontinue the treatment. It was a lesson in the fallibility of masking attempts. The wig, though it provided Allen with increased confidence, ultimately couldn’t help her manage her trich long-term. In the ruins of this treatment plan, Allen felt discouraged.
“I thought, ‘If this couldn’t help me, what could?’”
The answer came from somewhere she never expected.
Not long after the salon technicians permanently removed Allen’s hairpiece, things began to change for the better. Allen felt great after she’d gone a day or multiple days without pulling. She always made sure to share this news with her parents and family, who celebrated the little victories. This drove Allen’s mother to make an impulse purchase — a mere three dollars at the drugstore — that proved more effective than any treatment method before it.
“I kept track of how many days I had gone without pulling with a whiteboard,” Allen said. “It hung on the door of my bedroom and every night I’d go without pulling, I would write the number. So it would say, ‘We have gone however many days without pulling.’”
For the first time in two years, Allen went weeks without pulling her hair. After a month, there was a celebration. After three, another.
After a year had passed, Allen and her family were thrilled. Her hair had grown back in a beautiful blonde, covering the memory of any bald spots once marking her crown. This prompted the biggest celebration of all. On Facebook, Allen’s mother proclaimed that her daughter had “beat trichotillomania.”
While she undoubtedly deserved this praise, even submitting Allen’s recovery process to further public scrutiny had its downsides.
“It felt good, obviously,” Allen said. “But also, what’s going to happen when all of her Facebook friends see that I have bald spots again? I don’t want it to be like, ‘Oh, I beat trichotillomania,’ and then all of the sudden, I didn’t.”
Not long after her 365th day without pulling, Allen began to feel the old impulses. She found them historically hard to fight off.
Relapse and the road to acceptance
“When it got close to a year, everyone started talking about it again, so the thought of pulling came back into my mind,” Allen said. “One day, I thought it would feel good to pull, and it did. I thought, ‘Oh, this is just one time. Let’s just forget about it and not do it again.’ But then it kept happening. I kept it secret for a while, but there’s only so long you can keep it a secret before bald spots start showing.”
This setback shattered Allen’s pride in herself. This, again, would have been difficult enough to endure in private. But everyone knew about Allen’s success story. Her bedroom door, her relatives’ social media accounts, and even her scalp proclaimed her triumphs.
The shame, which she had gone over a year without being pestered by, had crept back in. As stated above, Allen initially hid the resurgence of her pulling. This only paved the way for guilt.
“Keeping it a secret was bad. Everyone was saying, ‘You’ve gone a year without pulling. We’re so proud of you.’ But deep down, I knew that while I had gone a year, I was pulling again and hadn’t really recovered. Everyone was congratulating me and I was thinking, ‘I don’t deserve this.’”
While this relapse made her year without pulling no less of an accomplishment, Allen has had to accept that she may have to battle trich for life.
New goal: learn to live with trich
“Trichotillomania is lifelong,” Dr. Tan said. “Patients may have moments where they do pretty good, and then they may be exacerbated. The point is to stabilize it. If this can be done, it can make a really big impact on their quality of life.”
Allen currently uses her old friend, the whiteboard, to keep track of her pull-free days. Presently, she has gone 21 days without pulling. She has learned to take things day by day, to keep on trying, and to forgive herself.
“People sometimes say that recovery isn’t linear,” Allen said. “They’re right, and knowing that helps.”
Above all, Allen has learned to accept that her susceptibility to pulling impulses is not at all her fault.
According to Davis, overcoming the shame that often accompanies mental health issues paves the way to recovery.
“Shame is a particularly prominent driver in the stigma of mental health, and the overall impact of that is that people suffer in silence,” Davis said. “The ultimate suffer-in-silence consequence is that people don’t access service.”
Davis explained that when a child starts exhibiting “psychiatric symptoms,” it statistically takes the family anywhere from six to eight years to provide them with treatment. He believes that this “delay in care” is one of the most alarming results of shame and stigma.
“If you didn’t treat an infection right when you got it, can you imagine what it would look like in your body six to eight years later? Mental health is the same way. If you neglect early onset of symptoms, over the course of time, when you go to then get treated, that treatment prognosis is much more guarded and difficult,” Davis said.
Luckily for Allen, she eventually overcame the shame she felt. She realized that “suffering in silence” just made her feel worse.
“I was really ashamed of it for a while, but after a while I just thought, ‘Why am I ashamed of it? It’s not like it’s my fault,’” she said.
Resisting the impulse to mask
While trich’s very public nature daunted Allen at first, she has learned to utilize it to her advantage. After two years of battling trich, Allen decided to use her own social media as a platform of discussion for the disorder. Instead of allowing people to speculate on her battle, she talks about it, herself. She reflects that being open about her struggles both empowered her and allowed her to make connections with others who battle trich.
“I just sort of embraced it,” Allen said. “I wanted to let people know that yeah, I might look different, but I’m not going to let that bring me down.”
Allen hoped she could help others struggling with their mental health in smaller towns to realize that they have nothing to be ashamed of. She wanted to encourage people to reap the benefits of reaching out to others.
The importance of a strong support system
Allen cites her parents and sisters as her main support system throughout her journey, but also emphasizes the importance of having good friends.
“It’s so important to have people who can one, hold you accountable, and two, support you if you’re not doing well. I would definitely encourage people to reach out to others,” Allen said.
Connecting with others also allowed Allen to overcome the stigma she felt was attached to her in her community. Finding people who supported and understood her boosted her into recovery and helped her release her needless shame.
“I haven’t gone as many days as I once did without pulling, but I do feel like I’m recovering. I’m not ashamed of who I am or what I’m going through anymore, and I have people who love me and listen to me. That’s enough.” If you have one understanding person to talk to, it’s easier to ignore the others who just don’t get it.
The science of support: effects on the brain
Davis confirms the positive effects of reaching out to others, citing loneliness as a major factor in many psychiatric conditions.
“Isolation and loneliness load on anxiety, load on depression, and load on suicidal ideations,” Davis said. “One of the reasons why supports and support groups have been so important for people over the course of time is to get that connectedness to others who are either going through similar things, or who can support what’s going on with them.”
Davis also explained what happens in the brain when one communicates their concerns to others. The right side of the brain handles the emotions that are often difficult to explain or put into words. When talking to someone else, however, the two hemispheres communicate, allowing the left side of the brain to give language to those emotions.
“Often when you’re supporting somebody, you don’t even realize this is happening,” Davis said, “but you’re actually a part of a neural, psychological process where people take unmodulated, raw emotions and transfer them to another part of the brain. Just being there for them and supporting them allows those really hard emotions to start to have words.”
Thus, speaking to others promotes recovery, as does abandoning shame. Allen wishes she had known this from the beginning. She now dedicates herself to making sure others feel comfortable sharing their struggles, no matter their location or cultural climate.
Allen’s advice: reach out
At age sixteen, Allen has garnered wisdom beyond her years. When asked what advice she would give to anyone struggling with mental health in a small town or insular community, she answered immediately and enthusiastically.
“You don’t have to conform to what a small community thinks is right,” Allen said. “Don’t pay attention to what people are saying about you… I think that’s the big one. Just don’t care. People are going to say things, so just let them say things. It’s their problem.” It’s not your job to convince people of reality, nor to tell them all about your struggles. However, talking to trusted others is the only surefire way to eradicate shame.
Allen’s assertion echoes Davis’s advice against suffering in silence. The catastrophic effects of shame are as verifiable and numerous as the benefits of asking for help and receiving support.
“Support is the essence and core of all pathways to recovery for almost all mental health conditions,” Davis said.
Trichotillomania, like any mental health struggle, often comes in waves. To weather its storm, be resilient, forgiving, and always anchor yourself in a solid support network.