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Our Challenge to You During Body-Focused Repetitive Behavior Awareness Week

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My name is Katie and I have been pulling out my hair since I was 8 years old. I am now 25. For most of my life, I was crippled by shame because of my behavior. Some days I spent five hours or more in my closet, pulling out my eyebrows and head hair until my fingers were calloused. I thought no one else in the world did what I did. I believed that if anyone else knew, they would no longer love me or accept me. I believed I was worthless.

woman smiling

Today I am bald and wear a wig. My hair pulling is as bad as ever, and there are days when I want to give up. Sometimes it seems that life is just unfair. But most days, I wake up and do what I do best: I work hard, I write and then balance that out with an episode of “The Bachelor.” I spend time with my family, I go out dancing with friends, and I watch Disney movies with my boyfriend (“The Lion King” still makes me cry). Most of those days, I pull out my hair. All of those days, I know something I didn’t before: I am not alone.

I know I am not alone because I have read, heard and witnessed the stories of thousands of individuals just like me: people, who happen to pull out their hair. People, who happen to pick their skin, or do related body-focused repetitive behaviors. Their voice has given me a voice. Their strength has given me strength, even with my continued vulnerability. I have learned I can be hurt and be strong. I can be vulnerable and be empowered. I am not cured, but I am healing. That healing comes from knowing I am not alone, not in my behaviors, and not in my suffering. 

Two out of 50 people have a body-focused repetitive behavior (BFRB). I have 484 Facebook friends, which means about 20 of them are pulling out their hair, picking their skin or doing a related behavior. Most of those friends have never received treatment, and many of them believe they are alone.

Hair pulling, skin picking and related disorders are common, and the suffering that is created by them is universal: pain, isolation and self-hatred. No one should have to feel shame for behaviors they cannot control. Now is the time to end it.

This year, the TLC Foundation for BFRBs and The Mighty are giving us a challenge: To share our voices. They are compiling words from members of the BFRB community to create a force of togetherness and empowerment. We may not have a cure yet for these disorders, but we do have a path for healing. By sharing your voice, you will help someone else feel less alone. You may allow someone a deep sigh of relief. Or, as a hair puller once did for me years ago, you could save someone’s life.

Share a word. A sentence. A story. Anything that you feel will make your voice heard in the way that feels right to you. At the end of BFRB Awareness Week (running from Oct. 1 – 7), The Mighty will create a story that compiles all of your words, completely anonymously.

Make your anonymous submission by clicking here.

Our goal is 100 voices heard by week’s end: that means about 14 of your Facebook friends will know they are not alone each day of this Awareness Week. Be a voice of communal suffering, frustration and ultimate empowerment. Allow yourself and millions more globally to feel a little less alone. I want to help others experience the healing that has saved my life — I hope you will join me, one voice at a time.

Watch the video below to learn more about the BFRBs community and how to find support for yourself and others:

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How 'Jeopardy' Saved My Relationship With My Daughter

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We have certain patterns we follow, like it or not. Night after night, day after day, we fall into our patterns of doing and being. In our house the patterns look a lot like water collecting at the edges. We go into our respective corners and we tend to tune one another out. We hibernate and we regroup. I do it, my husband does it and now my daughter has begun.

Over the course of this year, my daughter, a bright and shiny 11-year-old, began once again to transform. She was becoming a tween and in doing so, she was all at once building and setting sail on her raft, bidding us farewell. Emotionally, she was often miles away and my smoke signals were going wholly unnoticed. I stood on the shore, waving my arms, exhausted. I ached for communication, to know that she was hearing me, to hear her. Often, she sat down at dinner, crouched over a book, replying in clipped, one-word answers. Her door was exclusively closed for privacy in the evening. Even her TV watching had become private. “Get out,” she’d say when we poked our heads in. I missed her. I felt like I was racing across ice, slipping and falling sideways with every move I made as I parented. Where had the time gone? How did we get here? And how did it happen so quickly?

We’d been through a lot together. My own battle with anxiety and my daughter’s experiences with trichotillomania, they had all woven us together intricately. We recognized each other. I was awed by her strength. Feeling my daughter drift away left me out of synch, even though I recognized it as par for the course. She was, simply, growing up. I had to let her feel her space.

Then, I noticed it. I was dipping into my own guilty pleasure, watching the Real Housewives of Wherever while everyone was asleep, when I saw it scrolling through the DVR. “Jeopardy.” She was watching “Jeopardy”? I had loved the show as a kid and it brought me back. It felt like blinking lifeline, a raft I could jump aboard to reach her. The next night, I knocked on the door to the den after hearing the familiar opening, “Can I join you?” I said, pointing at the TV. “Sure” she said, confused. “You like ‘Jeopardy’?” And so began our new nightly pattern, our 7:30 date. One I looked forward to.

We became obsessed. We laughed, we rooted for contestants and loved it when anyone asked for a “true Daily Double.” We were invested. I felt myself as I paddled, getting closer to the island where she had set up camp. She was beginning to see me, and I could see her. The gap seemed smaller and we were slowly drifting away from our corners. We evaluated the categories; Science was always a winner for her, TV and Film, winners for me. I knew she was smart, but she got to show it off and we’d impress and surprise each other as we took chances, jogged our memories and came up with the right answers (sorry, Questions).

“Meet her on her ground.” It was a refrain I’d heard for years and tried, but this, this, could actually be her ground I thought. I dug in deeper. Having recovered from trichotillomania, my daughter had found lots of ways to redirect her desire to pull at her hair. One of her favorites was putting a little glue on her hand, letting it dry and then picking it off. I decided to give it a try and she was excited, like I was trying on her favorite shirt, and finding that it fit. We sat there, night after night with our glue and our “Jeopardy” and began to recognize each other, once again. We were both trying to stay grounded. I was on this island, I began to make myself comfortable.

As life does, the tide shifted and I’d find myself suddenly thrown off. “I need some time to myself,” she’d tell me. I was back in the water, watching her from afar, some days she was happy, others she had her knees pulled in closely, her head hanging low. She had come so far, I reminded myself, and it was a journey we had taken together. I couldn’t manage her emotions, just as I couldn’t manage her trich, and she had found her own strength battling both. I had also found mine.

Eventually, we would begin again, and just as quickly, she would send me away once again. It would become another one of our patterns, for better or worse. The swim to her, while sometimes exhausting, was making me stronger. While the tide continued to shift, I knew I could always find my way back. And while I despised the distance between us, it somehow brings us closer when I manage to find myself back by her side, breathlessly trying to keep pace.

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When Your Trichotillomania Doesn't Seem 'Bad Enough' to Talk About

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The trichotillomania community is strong. I mean, when you have a disorder that only affects two to three percent of the population, it’s tricky (no pun intended) not to feel a bond with someone else going through the same thing.

In so many ways, the community that has formed because of trichotillomania is wonderful. People with trich support one another, sharing stories of how trich entered their lives, of techniques that have helped them to stop pulling (or to pull just a little less) and of techniques that really, really didn’t work out. When it feels like the entire world is staring at the bald patch on your head or judging you for pinching at the hairs on your knuckles, it’s nice to know someone else out there just gets it.

However, there are consequences of this community. Because the percentage of people who have trich is so small, it makes sense that only a few stories about trich get widely spread throughout the community. A few people become the faces of trichotillomania, and a few stories become something of the “everyman’s story” of trich.

Now, these stories aren’t wrong. It’s crucial for people with trich to tell their stories, both to inform the greater population about this lesser known illness and to start to push aside any sense of shame there might be. However, when so few stories become well-known, those stories start to become the “bible of trich.”

For example, most stories about trich involve an early onset. It’s usually some time in elementary or middle school, maybe high school in a few cases. I started pulling my freshman year of college. When I Googled “pulling hair out” and found stories about trichotillomania, at first, I was astounded I could have a diagnosis. Then, I realized everyone was young when they started pulling. Does that mean my trich was somehow lesser than that of those who started pulling at a young age?

When I first started pulling, it only affected my eyebrows. I felt ashamed, but I knew I was able to simply draw them in with a pencil or let my bangs fall into my face to hide. I read about people who were balding because of their trich. Thus, I felt like my trich just wasn’t as serious and that I had no right to complain.

So, I stayed silent.

I was a silent observer of the trichotillomania community for more than four years, not because I had nothing to contribute to the conversation, but because I felt I just wasn’t doing anything that gave me a right to a voice in the community. Honestly, I just didn’t feel like my trich was “bad enough,” and that fear kept me from seeking help for more than four years. I waited until my trich had spread to the hair on my head, and only then did I feel like my trichotillomania was “real.”

Since I’ve reached that point, I realize I should’ve never felt ashamed for how trichotillomania affected me. There is no right way to have trich. Yes, we all struggle with pulling out our hair, but that is the only definite overlap. Maybe you don’t pull the hair from your scalp. Maybe you don’t find fidget toys helpful. Maybe you don’t feel the seemingly required sense of shame about pulling. Maybe you feel you’re “too young” or “too old” to have trich.

Don’t question your right to be a part of this community. You’re not dealing with trichotillomania incorrectly. All of your feelings regarding trich are justified, and your trich is no less important than mine or anyone else’s. Our battles are separate and unique, yes, but they are related. You’re entitled to the same amount of respect and support as everyone else in this community. Your battle is your battle, but you don’t have to fight it alone.

Image via Thinkstock.

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To My Best Friend, Who I Met Because of Our Trichotillomania

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Sarah and I attended the TLC Foundation conference for Body-Focused Repetitive Behaviors in April 2015. It was my first conference and her second. To say I was nervous would be an understatement. But I was also excited to meet other people for the first time who have the same disorder as me; a disorder that caused me to feel ashamed and isolated.

I made many friends at the conference. Sarah and I happened to sit next each other at one of the workshops, although we didn’t really talk. I added so many people from the conference on Facebook afterwards, and Sarah was one of them. We were also in the same Facebook group for teens with trich.

Immediately after the conference, I made a “coming out” post on Facebook telling all my family and friends that I have trich and where I was that weekend. Sarah is very vocal online about her experiences with trichotillomania and mental illness. As it turned out, we shared more in common than just having trich. We both also have struggled with anxiety and depression. Shortly after the conference, Sarah began making YouTube videos about mental health. Many of them resonated with me, and I started messaging her telling her how much I could relate to them.

In early 2016, my OCD and anxiety were at an all-time high and became debilitating. When I made a long post about it in the teens with trich group, Sarah privately messaged me and disclosed that she had gone through intensive treatment for anxiety the previous year, and she said she understood what it was like. It was then that I knew we had made a real connection. We attended the TLC conference again this past April. We were eagerly counting down the days. We were so excited to see each other in person again, since our friendship had blossomed in the time that passed since last year’s conference.

We spent that first night eating snacks in my hotel room, laughing and chatting as if we’ve known each other for years. We talked about the usual things two teenage girls would talk about, but somehow trich always ended up weaving its way back into the conversation. We totally understood each other, and it felt like it was a totally normal thing to talk about, because for us, it was. I can’t exactly talk pulling my hair out so candidly with my other friends.

Sarah told me she was glad I invited her to my room to hang out, being that she has social anxiety and doesn’t do well in big groups. The funny thing is I, too, have social anxiety and am the exact same way. The following morning we shared a long hug as I cried reflecting on my journey with trich. I have come so far in the past few years and trich has changed from a negative to a positive aspect in my life.

Since the conference, we have met up again in person twice. We both went to an awareness walk for BFRBs, and most recently, Sarah spent the weekend at my house and we went to the American Girl store in New York City.

We may live two states and over three hours away from each other, but our friendship transcends the ordinary. We may not always be able to see each other in person, but we text every day, and video chat often. For someone with social anxiety, finding people who you feel truly comfortable with is not an easy feat. Having trichotillomania and other mental health issues makes it even harder to connect with my peers. But with Sarah, I don’t have to give an explanation for being myself. Because she gets it. She’s gone through the same things herself.

In fact, we have more than a few things in common. We are the same age and our birthdays are just less than two months apart. We have the same middle and last initials. Obviously we both have trichotillomania, and have also dealt with anxiety and depression. We both received glued-on hairpieces from the same charity, Hair Club for Kids. The day after I switched to a clip-in hairpiece, Sarah also got a clip-in piece. A couple months ago I started shaving my head. Just recently Sarah also shaved her head. We share a similar perspective regarding trich and mental illness. And above all, we both have dreams of someday changing the world… I truly believe that we will.

We may have become friends because of trichotillomania, but our friendship has become about so much more than that.

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When Trichotillomania Leads to Bullying

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Hair twirling and fiddling is a common habit. But for many people the act of pulling hair is far more than just a bad habit — it is a clinical disorder known as trichotillomania. As a therapist who specializes in body-focused repetitive behavior like trichotillomania, or trich, I’ve seen how it affects people who have it. 

Trichotillomania affects people of all ages. It is characterized by an irresistible urge to repetitively pull one’s own hair. Although the most common place to pull is the scalp, people can focus on any part of the body where there is hair, be it the eyelashes, eyebrows, even pubic hairs. This causes tremendous shame and embarrassment for the person who has it. The world has always been preoccupied with aesthetics, with human value and worth often being judged in society by our conformity with what is viewed as attractive or beautiful. This is particularly significant in the preteen and teenage years when self-identity is still being developed and social conformity and belonging is of great significance.

Unfortunately, this is also a time when bullying behavior is rife. With the advent of the cyber-world, bullies have increased access to their victims through social media communication. Anyone who is perceived as “different” to their peers is vulnerable as a target for bullying, and a condition like trichotillomania is no exception.

The Target of Bullying

Repetitive hair pulling can lead to baldness, or the person may even have no eyebrows or eyelashes. The negative impact on the person’s appearance often leads to the individual going to great lengths to cover up their hair loss. While covering up may hide bald patches, dressing in a manner that is not in line with the latest fashion trends or is frowned upon within the individual’s peer group can also be a target for bullies. People who have trichotillomania also often withdraw from social environments where they feel their appearance may be harshly judged, such as going to the beach, public pools or parties. This can lead to the individual being labelled as nerdy, socially awkward or introverted. These labels are also popular targets for bullies. In my online therapy program, I have come across many people with trichotillomania who express feeling alone and socially isolated because of this condition. This further perpetuates the cycle of pulling as it is often triggered by the experience of negative thoughts and emotions.

Dealing With Bullies

There are numerous websites and support programs worldwide trying to tackle bullying in schools. One website lists a few simple strategies offered by students who have been bullied on dealing with these situations.

Of course these are general strategies that do not address the specific issues that someone with compulsive hair pulling may be dealing with. If you are struggling with trichotillomania and are being bullied, the most important step you should take is to seek help and support for your condition first. Having someone you trust who can support you in dealing with this condition will have a positive impact, while simultaneously providing you with support for the bullying.

One young woman named May Brown decided to break free from the silence of this condition by uploading a video confession expressing what she had been going through. May had been nicknamed by her classmates as “Baldy” because of her bald patches. To hide her bald patches, she’d wear hair slides or hats. Since her video confession, she has received messages from people around the world asking for some pieces of advice on how to cope with this condition. Others would also share their trich stories. May has found strength in this new found support system and her openness about her condition has also helped her deal with being bullied in a more assertive way.

If you’re being bullied because of your trichotillomania, don’t be afraid to follow in her footsteps and speak out.

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Please Don't Tell Me to Stop Pulling Out My Hair

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Body-focused repetitive behaviors (BFRBs) are like a mixture of an anxiety disorder and obsessive-compulsive disorder (OCD) without quite fitting into either category. The most common BFRBs are trichotillomania (hair pulling or picking) and dermatillomania (skin picking). BFRBs can happen consciously, where the person recognizes their behavior but cannot stop; or unconsciously, where the person doesn’t realize they are performing a behavior; or some combination of conscious and unconscious.

I have lived with an extreme case of trich for 14 of the 22 years of my life. I have lived with dermatillomania for longer than 14 that, but the derm I experience is mild comparative to the trich.

I am writing this post because I am fed up with people telling me to stop pulling at my hair.

Before I was diagnosed with trich, my parents would occasionally tell me to stop pulling at my hair. They didn’t do it a lot because I think they knew it embarrassed me to be caught doing a behavior I had been told was “bad,” “not normal,” etc. They no longer tell me to stop pulling at my hair because they learned that telling someone to just stop a behavior doesn’t actually work.

When you tell a person with trich or derm to stop a behavior, it often does more harm than good. Because our society identifies these behaviors as “abnormal,” many people with trich or derm hide them and then feel shame about performing them, even if they have little physical control over whether they perform them or not. When you tell a person with trich or derm to stop a behavior, you are calling attention to their disorder, acknowledging that you see them doing this behavior and that it is not good.* This is often shameful for the person and will not stop them from doing this behavior in the future; it may, however, encourage them to find new ways to hide this behavior.

Approaching someone close to you about a behavior you find concerning can be tricky (no pun intended). Like with any health disorder, knowing how to talk to someone you are concerned about isn’t easy. The two most important things, from my perspective, when speaking to someone about trich or derm are: 1) Let them know you are only pointing them out because you are concerned and want them to be healthy and 2) Ask what they want from you. Maybe they want someone to talk to who is empathetic, or maybe they would prefer to keep this part of their life between them and their doctor.

*This situation may be different if this person has specifically asked you to help them identify when they are pulling or picking.

Image via Thinkstock.

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