Have you ever heard of trichotillomania or hair pulling disorder? While it isn’t a rare mental illness (apparently over 1% of Americans live with this disorder), most people aren’t aware of it or other body-focused repetitive behaviours. (BFRBs)
According to the Canadian BFRB Support Network, trichotillomania is “the compulsive urge to pull out hair from various parts of the body resulting in noticeable hair loss. Areas where pulling usually occur include scalp, eyelashes, eyebrows, arms, legs, and pubic area.”And a BFRB is an “umbrella term for a group of repetitive self-grooming behaviours in which an individual damages their appearance or causes physical injury.” BFRBs are also referred to as “impulse control disorders” and related to the obsessive-compulsive disorder (OCD) Spectrum. Other BFRBs besides trichotillomania include dermatillomania (skin picking disorder), onychophagia (nail biting) and trichophagia (hair eating disorder).
I recently sat down with a woman named Kala in order to get her firsthand lived experience with trichotillomania, in an attempt to learn more about it directly so I could use my blog and platform as a tool to raise awareness. Slay Girl Society is meant to help ALL people with mental illness – no matter their disorder.
When I met Kala at a local coffee shop in Toronto, it was actually her 30th birthday. She told me that she had been living with trichotillomania (or trich for short) since she was about 12 or 13 years old. According to Kala, women are much more prominent in the trich community and the female-to-male ratio is 10:1. The prevalence of woman might be because more women come forward with their illness and it is more obvious for women when their hair is uneven or when they have bald spots.
Mental health has always been on the forefront in Kala’s life – she studied psychology and social services and has worked in the industry. Beyond the trich, Kala also lives with anxiety and depression. She says those are a bit easier to explain and manage because they are more accepted and understood. However, it’s a bit of a “chicken and the egg” situation when it comes to treatment because it is unclear whether the “trich causes the anxiety or the anxiety causes the trich”.
A lot of people with a BFRB are very self-critical. “I have never met someone with one who isn’t a perfectionist and incredibly hard on themselves,” Kala said in our discussion.
From Kala’s experience, trich is a really isolating and stigmatized disorder, particularly during puberty. “Puberty sucks to begin with, when struggling with body issues – BFRB just adds an extra layer of shit on a shitty cake” Kala added. The harm in particular is that feeling isolated can lead to suicidal tendencies. A lot of people with trich have terrible self-esteem, particularly because there is the phenomenon of going “pull-free” and you see yourself as a failure and beat yourself up when you break your streak. Kala thinks it would be easier if people focused on moderation, rather than complete abstention.
While she says mental health awareness and treatment has come along a way, growing up in the East Coast was difficult. In particular because mental health is “10 years behind there”. The lack of knowledge around trich might contribute to the stigma, as it’s rarely discussed among the public, let alone mental health professionals. Kala told me that it’s only been in the DSM (Diagnostic and Statistical Manual of Mental Disorders) for 30 years. Often, she needs to tell her doctors about it. Growing up, her parents tried to be supportive but it is often common that parents can be hard on their children with trich since they don’t understand it. “It can be hard for someone who doesn’t have a mental illness to put themselves in your shoes.” Kala said. Parents often ask what they did wrong. “They didn’t do anything wrong. It’s my body, my chemicals, my brain.”
People often ask Kala why she can’t just stop pulling her hair out. However, for her and most others, there is not a lot of control involved. Most people pull unconsciously and some even pull in their sleep.
While a lot of people live in shame about their trich, Kala comes from an acceptance point of view. She accepts that she has trichotillomania and lives her life not worried about telling people. It was clear that she felt that it was dangerous to carry shame and not to be able to express yourself and tell somebody.
“I accept who I am with the disorder. I think I am a better person- more compassionate and understanding than most people because I have walked in these shoes that haven’t always fit very well. When I see someone that struggles with mental health, I get it. I’ve become an ally.”
When Kala talked about her trich, she made it very clear that she “lives” with the disorder. She doesn’t “suffer” and in fact hates when people use this word. Kala believes that you can have this disorder and excel and be happy. Many people feel broken and that they are not functioning in society.
Because of the stigma around the disorder, people often call those with trich “crazy” or they don’t respect them or treat them as “lesser”. But Kala emphasizes that trichotillomania has nothing to do with intelligence, mental capacity or the ability to deal with stressful situations. “I am capable of living a full and successful life.”
There is also a lot of stigma around trich and BFRBs because people see it is as self-harm. Kala asserts that there is a difference and that difference is intent. She herself engaged in self-harm when she was younger, and it was always to punish herself. But Kala does not pull her hair to hurt herself. It is a compulsion. There is a lot of shared stigma with self-harm because people blame the person as it is seen as they doing it themselves so they don’t deserve empathy or pity.
BFRBs can really impact your life. For one, they can be dangerous. You can get an infection from skin picking. As well, with trich, your hair might not grow back eventually or grow back properly or you might get gray hair quite early because the hair follicle gets damaged.
Kala’s trich can often keep her from doing certain activities. She uses a product to cover her bald spots, so she often avoids swimming. She hates going to the dentist because she often leaves product on the chair when she gets up. The same thing happens when she is doing yoga.
Dating isn’t easy, and although Kala is very accepting of her illness, it took her a while to tell her current boyfriend. Outside of work, Kala rocks her natural hair, but at work she wears a wig. This is mostly because she doesn’t want to field the barrage of questions that usually come when people learn about her disorder. According to Kala, wigs are “uncomfortable” and “hot as hell.” They can be really confining and can prevent her from doing activities where she feels too much heat.
What causes Kala to pull her hair? It is often when she is over-stimulated or under-stimulated. It often happens when Kala is studying, reading or watching TV. The happy medium between both is very small and finding a balance is incredibly difficult. Stress or illness also play a big role in causing the pulling.
“I could probably open some of my old books from college and there would still be hair in them,” Kala joked.
Is there a way to prevent someone from pulling their hair? Often, people can try cognitive-behavioural therapy (CBT), dialectal behaviour therapy (DBT), talk therapy or medication. For Kala, these don’t work completely in curbing the behaviour. A few techniques that people use to curb it are wearing a bandanna or hat or finding something to occupy your hand and help you focus when you are stressed or anxious. This could include a fidget toy or spinner ring. Some people paint or knit. Kala herself has recently tried cross-stitching.
There aren’t many resources dedicated to trichotillomania or BFRBs, but there are some. Kala refers to the community as “small but mighty”.
In Canada, as I mentioned, there is the CBSN. In Toronto, Sunnybrook Hospital has the Frederick W. Thompson Anxiety Disorders Centre, with professionals engaging in important research. In the United States, there is the TLC Foundation for Body-Focused Repetitive Behaviors.
Kala herself is very active with the CBSN, running support groups, writing on their blog and engaging in other awareness activities. It has been a driving force as an adult for her to interact with younger people with trich and talk to them about her experiences. She really wants to emphasize that it does get better. Helping others learn to come to terms with the disorder has been really inspiring for her and she wishes that she could work full time in making a difference for people with BFRBs. By getting involved in the community, Kala feels less alone.
I was really impressed with Kala and her candidness in describing her mental health issues to a complete stranger in the middle of a crowded coffee shop. I admire her openness and acceptance-based attitude and her ability to thrive.
Do you have trichotillomania? Please share your story in the comments below! Or reach out to me at firstname.lastname@example.org and we can collaborate to share your story as a contributor to the blog.