I pull out my hair. I knew I wasn’t supposed to, but I didn’t know how to stop. It started with hormonal changes during puberty, at 10 or 12 years old. I was grossed out after watching a video in science class about the mites in our eyebrows. It brought attention to my embarrassing bushy eyebrows. I pulled to thin them out and it just felt good. After my dad was diagnosed with leukemia, my hair pulling got worse. My only consolation was pulling out every eyelash and eyebrow hair I had. It somehow eased the pain and became my main way of coping with stress caused by schoolwork, bullies and his sickness. We were so concerned with his physical health, and I hid it so well using black eyeliner that no one ever really noticed. What I didn’t know is that I had developed Compulsive Hair Pulling Disorder.
In my 20s I learned that Compulsive Hair Pulling Disorder is a mental health condition, medically known as Trichotillomania. I learned that Trichotillomania is one of many Body Focused Repetitive Behaviors (BFRBs), the main category for conditions in which a person repeatedly and involuntarily self-grooms as a coping mechanism for stress, anxiety, boredom and other mental states of discomfort. Other BFRBs include excessive skin picking (Dermatillomania), nail biting (Onychophagia), cheek biting (morsicatio buccarum), and nose picking (Rhinotillexomania). I was no longer alone, but the stigma around mental illness forced my silent suffering and I clutched tighter to my secret.
If it is not you, it is someone you love.
It’s this shame-fueled secrecy that makes BFRBs the most common mental health disorder you’ve never heard of. BFRBs do not discriminate. Mayo Clinic estimated that 1 in 20 (5%) are affected to a debilitating degree by BFRBs and a 2020 study found new evidence to show that men and women are affected nearly equally by trichotillomania. Additionally, the COVID-19 pandemic led to an increase in distress and symptoms for nail-focused BFRBs and skin picking or hair-pulling disorders. In a small 2012 study of three large medical colleges in Karachi, they found BFRB prevalence to be as high as 22%! BFRBs cause distress, visible cosmetic damage, fear of judgment and increased social isolation.
[Read Related: Mental Health Affirmations for Accepting big Changes]
From pain to purpose.
I hid my Compulsive Hair Pulling Disorder for more than 20 years. A few years ago, my husband caught me without eyebrows. When I shared my trich secret, he met me with compassion. Very quickly we had an ‘aha’ moment and we came up with an idea to help build awareness and take control. Together with two friends in Minneapolis we co-founded HabitAware and invented a smart bracelet, Keen, to detect specific hair pulling, skin picking and nail biting movements.
When Keen senses the trained wrist-based motion, it vibrates as a way to gently bring attention to the unwanted behavior. The vibration is a cue to pause and choose a healthier soothing strategy, allowing you to take control of unwanted hair pulling, skin picking and nail-biting. Priya Ramanujam, Ph.D., a Psychologist at Children’s Program in Oregon who treats children and teens with BFRBs, shares “The HabitAware bracelet…has been another promising tool (for) developing awareness to try when families are feeling hopeless.”
My mission is to raise BFRB awareness and encourage hope and healing for the community.
BFRBs and Brown Culture
Our hair, skin, and nails play a significant role in our culture and religious rituals. Understanding these nuances is important for effective care. UK-based Anthropologist Bridget Bradley, Ph.D., stresses “It is crucial for Body-Focused Repetitive Behaviors to be considered from a social and cultural point of view. We must take stigma and family dynamics into account. We cannot assume that scientific medical models apply to all people across the world…it is essential that BFRB care and support be tailored in culturally-specific ways so that each community and culture receive care in a way that makes sense to them.”
Dr. Ramanujam shares similarly, “A large part of why I became a psychologist was to reduce mental health stigma in the South Asian Community. I strive to communicate to my patients and their families that the body and mind are inextricably linked, and just as one would treat an illness of the body, the same applies to the mind. It’s important to understand the relationship between their thoughts, emotions, and behaviors, and how each impacts the other…so they can focus on building a more meaningful life…”
[Read Related: Thriving, not Surviving — a Conversation on Resilience]
My advice to anyone suffering from a BFRB is simply this: Be brave and share. It’s the only way to change the culture around it. As one friend put it, “the world did not end” when she took her hat off in public for the first time! It is only with your voice that we can lift the stigma. You have a choice to take control of this disorder, rather than let it control you. That choice lies in a willingness to change and awareness.
Speaking of awareness, October 1-7 is BFRB Awareness Week. Please share this article, or my TED talk, with others to help spread awareness and build compassion for those in the South Asian community who are hurting in hiding.
You can learn more about HabitAware:
If you need mental health support, please reach out:
- 988 Suicide and Crisis Lifeline
- BRFB Support Group Directory