Alone among millions: Finding MY cure for Trichotillomania

Alone with my “weirdness”

I pull out my hair. Hair pulling is a coping mechanism for stress, anxiety, boredom and other emotions. The behavior is often trancelike – characterized by a compulsive urge to pull out hair on the head, face or other parts of the body. It is a disorder medically known as trichotillomania.

But I didn’t know this growing up. All I knew was that it felt good in the moment and all I kept thinking was that I was weird and wrong for doing this “damage” to myself.

I always felt a calmness when I twirled my hair as a child. As I grew up, the twirling turned to pulling. It started when I was a tweenager, around the time puberty hit – and around the time my dad fell sick with cancer.

I felt so alone and afraid to tell anyone because I didn’t want people to think I was lesser than. I was already having a hard time fitting in at school. I already felt like an outsider. I didn’t want to give anyone reason to push me further outside the circle of normalcy. When people looked at me, I knew they could sense something was off, but they couldn’t put their finger on it. Kids can be cruel, regardless, so I did my best to hide my pulling.

The more I hid the pulling, the more I tried to hide myself. In fear of being “found out” I denied myself the chance to try out for our school basketball team, despite the encouragement of our school physical education teacher. I was too scared someone would see me in the locker room.  This same fear led me to skip pool parties and other social engagements.  It fed a vicious cycle of negative self speak & I grew up thinking I was “not good enough.” Looking back, I also probably wasn’t “just shy” the way everyone pegged me, but in reality was suffering from general and social anxiety disorders, which still have a small hold on me today.

Not knowing why I wasn’t in control of my thoughts or actions made my mind spiral even further!

Finding out the truth

As a young teen I had no idea the hair pulling “habit” I was dealing with was actually a mental health condition. I thought I was alone. Then, in my early twenties I searched “why do I pull out my hair?” online and found what is now the TLC Foundation for Body Focused Repetitive Behaviors (www.bfrb.org). This website was a wealth of information about trichotillomania and the start of my healing. I learned hair pulling was part of a broader group of mental health conditions known as body-focused repetitive behaviors (BFRBs), and included skin picking, cheek biting and even nail biting!

I also learned from TLCBFRB that scientific research indicates about 1 in 25 people experience trichotillomania in their lifetime. Some estimates put it at 20 million people suffering in silence from BFRBs.

The truth was I was not alone…And neither are you!

But that didn’t stop me from still hiding behind my black eyeliner. I still felt ashamed and still feared being judged by people close to me. I was scared I’d never find love. Knowing my hair pulling was an actual disorder was both a relief and an additional stress at the same time. As a post-college graduate, I didn’t have the resources or means at the time to take on the problem. It was easier to keep ignoring the pulling and sweep it under the proverbial – and literal – rug. I don’t know if I even really wanted to stop hair pulling back then.

Awareness of the problem is the solution

I’d probably still be hiding my hair pulling, if not for being caught! You see, although I finally did find love and although I vowed to have and to hold him, in sickness and in health, I didn’t share my trichotillomania with my husband, Sameer. He found out because he caught me one day, three years into our marriage.

One morning as I rushed to get ready for work, I turned around to get my black eye pencil and ran into him. He was standing there and with a surprised look, asked “where are your eyebrows?” I too was surprised, like a deer in headlights. “You caught me,” I said.  I couldn’t lie anymore. I couldn’t hide anymore. I couldn’t live in shame anymore.

I told the truth: I pull out my hair.

I showed Sameer how I pulled when I was frustrated, stressed, anxious, and even bored. I confided how I didn’t realize I was pulling until a few hairs wound up between my fingers. I shared how difficult it was to stop, even once I knew it was happening.

In sharing this secret, Sameer became aware of my struggle and I was able to embrace his support. I let go of 25 years of baggage and it allowed me to open up to him. Days later, as we were sitting on the couch and I was mindlessly pulling, he gently grabbed my hand. I turned to him and said “I wish I had something that could notify me and make me aware…that wasn’t you!” It was great to have his support, but I felt like a child being nagged, whenever he “caught” me!

Since we couldn’t find anything to help me with my awareness, we decided to build it!

With his love, support and desire to help me, Sameer and I set out to make a smart bracelet to help me break the subconscious trance and become aware. It was a 3-year process to prototype, test, iterate and bring our smart bracelet, Keen by HabitAware, to the millions hurting in hiding from hair pulling disorder.

Building awareness and practicing healthier strategies

Keen works by learning your hair pulling movements and then sending a vibration, as your “hug” on your wrist & your “self-care alarm.” The bracelets helped me learn to listen to my body and take stock of WHY I was pulling. It wasn’t until I started tracking my behavior with the HabitAware app that I found a pattern emerge: I pulled the most when I was up working late at night. With this new level of awareness I decided I would replace the pulling with something healthier: I would just go to sleep! Sure, the work would still be there in the morning, but so would my hair!  I now have full eyelashes & eyebrows and am just so much more aware of my mindset and where my hands are.

This is the same exercise we encourage everyone to do.  When you notice you are pulling, ask yourself:

• What am I feeling?
• What am I doing?
• Where am I?
• Who am I with?

The answers to those questions will lead you to the right healthy replacement strategy for you in that moment. As another example, say you are in college and notice you are pulling while you are alone, driving and that you are thinking about your school project that is due. This indicates your trigger might be stress. So in this scenario, you may turn to positive affirmations or deep breathing as you drive, to reduce the stressful feelings. You could even wear driving gloves to create a barrier and prevent the pulling.

When you have the presence of mind to pause and reflect, you have more power to choose not to pull. I am convinced it has the power to help others as well. The exciting thing is that others are having success as well and believe in this idea of the power of awareness. We currently have an NIH research grant to scientifically prove out our methods.

I want to be the change I wish to see. I don’t want hair pulling disorder to get in the way of me fulfilling my own potential. In this way, I want to inspire others facing similar obstacles to build their awareness muscles, reclaim their energy and fulfill their potential.

Guest writer, Aneela Idnani, is Cofounder and President of HabitAware (www.habitaware.com). HabitAware created its Keen smart bracelet to help people “Retrain the Brain” from unwanted behaviors, like hair pulling disorder (trichotillomania), compulsive skin picking (dermatillomania) and nail biting to healthier behaviors. Having grown up hiding her hair pulling disorder in shame, Aneela is now an outspoken advocate, raising awareness of these very common yet unknown mental health conditions. HabitAware is partly funded by a research grant from the NIH and was named a TIME Magazine 2018 Best Invention. Aneela is a mother to two young boys, aged 6 and 2 and loves replacing her hair pulling with arts and crafts!

*** CBT SoCal is grateful for Aneela Idnani’s contribution of this article to our blog, and for her work in founding HabitAware to help individuals suffering from Body-Focused Repetitive Behaviors. Including this in our blog archive is not an endorsement of HabitAware’s brand or products. ***