Overcoming Trichotillomania: The Power of Awareness - Aneela Idnani (Transcript)

Here is the full transcript of Aneela Idnani’s talk titled “Overcoming Trichotillomania: The Power of Awareness” at TEDxFargo conference.

Listen to the audio version here:

TRANSCRIPT:

I have a secret to share. This is a secret that I’ve held on to for more than 25 years. When it began at age 12, even I wasn’t aware of what was happening. And that confusion led me to hide. From then until now, from parents to best friends to even my own husband, I made sure no one was aware of this secret.

I, Aneela Idnani, pull out my hair. My hair pulling was subconscious and compulsive. Have you ever heard of someone who pulls out their hair without being aware that it’s happening? It’s weird, right? Well, that’s what I thought as a 12-year-old girl growing up. I thought I was weird, and I thought I was wrong for doing this damage to myself.

I thought that I was wrong and damaged. As I grew into my high school years, I watched my father battle and lose to leukemia. And my own battle with hair pulling intensified. I felt alone, I felt afraid, but I am so far from it. One in 20 Americans are just like me, hurting in hiding.

Discovering Trichotillomania

That’s 100 people in this room who are just like me. I am not alone, and neither are you. As I grew into my early 20s, Dr. Google made me aware of the facts. My hair pulling was a coping mechanism for stress, anxiety, and boredom. It was a mental health disorder with the name trichotillomania.

Trichotillomania is part of a broader group of mental health disorders that includes compulsive skin-picking, also known as dermatillomania, and chronic nail-biting, also known as onychophagia. These collectively are known as body-focused repetitive behaviors.

As if this struggle wasn’t enough, I have to contend with all of these syllables. Do you know how hard it is to write body-focused repetitive behavior awareness tweets? I do, and it doesn’t stop me, because I know we need awareness of these disorders for my community to come out of hiding and into healing. Body-focused repetitive behaviors are the most common disorder you have never heard of. If it’s not you who is hurting in hiding, it’s someone you know, it’s someone you love.

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The Struggle and Awareness

We hide because we are ashamed that our hands are doing this to ourselves. We hide because we are scared of your judgment. “Ew, you do what? That’s gross, why can’t you just stop?” We hide because we are afraid. Our hands are the gateway to the mind. Our thoughts fuel our emotions, which move our hands. When you’re stressed, anxious, bored, maybe you reach for a cigarette, or maybe you reach for a bag of chips, or maybe you reach for your journal, or the sky, whatever you choose to reach for to cope, I see you.

I see you. For BFRBs, the uncertainty, the anxiety, the noise in our heads manifests in our hand movements too. It’s that we reach for our hair, our skin, our nails, the things that make us beautiful, not because we want to, but because we just can’t stop. And all I want is for you to see us.

I was finally seen in late 2013. I was on maternity leave with my three-month-old baby boy. Maternity leave was stressful and exhausting. I was blessed with a happy, healthy child who slept a lot.

A Turning Point

Maternity leave was also really boring. And the hormones were all over the place. Boredom and hormones. A Molotov cocktail for my mind. The hair-pulling urges exploded, and my hands became ever more uncontrollable. One day, as I was getting ready in the morning, I went to grab my partner in crime for the last 25 years, my black eye pencil, to cover up the damage I had done.

I bumped into my partner in life, my husband Samir. And with loving curiosity, he looked at me and said, “Aneela, where are your eyebrows?” In that moment, I saw him ready to be there for me, and I shared my hair-pulling secret, not with such confident vulnerability that I have here with you all today.

You see, in 2013, I was caught, frozen in shame, and I chose to stop sweeping my hair-pulling under the rug. Over the next few weeks, I let him into my world. His biggest question was why I didn’t just make him aware in the first place, why I was hiding and holding on to all that shame.

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Creating a Solution

And then one day, as we’re sitting on the couch and I’m mindlessly pulling, he gently grabbed my hand, and I gently resisted the urge to punch him. But in that moment, I knew what I needed to take control of my hair-pulling was awareness of where my hands were. Nothing existed, so he and I, with two full-time jobs and a newborn baby, decided we’ve got time for this. We’re going to set out and create a solution.

We built our team, the HabitAware team, and we built a smart bracelet that we call Keen. Keen uses custom gesture detection technology to bring awareness to where your hands are. You train Keen using our mobile app in a 30-second process that’s recording your specific scanning motion onto the bracelet, much like a voicemail.

When Keen senses a match, it sends a vibration, a hug on the wrist, to gently remind you, “Hey, your hands are not where you want them to be.” That’s enough to interrupt the pattern of behavior, allowing you to now make a choice. Now, with this power of awareness, you can choose healthier coping strategies. Will you all take a deep breath with me?

Growth and Acceptance

As I used Keen, I heightened my awareness and recognized that late-night working stress was my number one trigger. Now, I just close the computer and go to sleep.

Sure, the work is there in the morning, and the stress of it is there in the morning, but so are my eyebrows. I’ve not just regrown my hair, I’ve regrown my self-confidence, something I had lost for 20 years.

But in the beginning, I wasn’t sure of this power of awareness. But we’ve been met with overwhelming support from the BFRB community and funding from the National Institute of Health and the National Science Foundation in the form of research grants to further improve and develop our technology.

And in 2018, we were humbled to be on the cover of Time magazine, all of this a testament to the work we are doing, to the legitimacy and the severity of body-focused repetitive behaviors and the need for our solution. My 12-year-old self, she’d never believed that she’d be up here on this red dot, sharing her story with all of you, with all of her eyebrows and all of her eyelashes, let alone start a company that’s come to defeat the monster that once brought her so much despair.

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You see, growing up, my hair-pulling fed a vicious cycle of negative self-speak, lack of self-confidence, and more hair-pulling. In fear of being found out, I skipped out on pool parties and other social activities.

A New Beginning

Because I was pulling out my hair, I told myself I would never be good enough at anything and dropped playing saxophone. Despite my love for basketball and my skill for basketball, I skipped out on high school tryouts, afraid that running back and forth on the court would make me sweat and make my eye makeup run off. I was afraid I’d be found out. I was afraid my secret would be revealed. We with BFRBs, we give up on the things we love, or we don’t even go after them in the first place because we are so afraid and ashamed. But my work with HabitAware is changing that.

We are shifting the conversation from shame and blame to compassion and understanding. Through our stories, we are shattering that shame. And now today, you are aware. Now you see us. Now you can go and you can take this power of awareness home with you and finally see that someone you know, someone you love, is hurting in hiding from their excessive and compulsive hair-pulling, skin-picking, or nail-biting. With the power of BFRB awareness, your compassion can help them. And with the power of keen awareness, they can begin to help themselves. I wish you all love, strength, and awareness. Thank you.

Overcoming Trichotillomania: The Power of Awareness – Aneela Idnani (Transcript)