“It was a long, sunny holiday weekend. My brother and I were at aunt Karen’s for the weekend. It was a day like any other, fun and family. We have always had a large, close-knit family so that was what life was like for me at 12 years old.
I was sitting in the front seat, waiting for aunt Karen when that first hair was pulled. The hair that led me on a long, horrible journey that caused me to be almost bald at age 12. I don’t even remember why I pulled it but it didn’t hurt so I pulled another one, and another. Looking at the hair in the sun, I could see my plain brown hair turn golden. The spot I pulled from was my right side above my ear. It felt tender to touch. I kept rubbing it and playing with my hair around the edges of that spot…
Before I knew it, I started pulling my hair out at school, quickly picking it up thereafter in hopes that no one saw me doing it. I would pull in bed and it was months before my mom noticed my spots. But she would help wash my hair because of how long and thick it was, so it was only a matter of time. One day, she asked me, ‘What is going on?!’ I lied. I lied to her and told her I didn’t know. Doctors visits followed. There was test after test, various medications prescribed to stop my hair from ‘falling out’. I was so embarrassed to now come out and tell them I was pulling my own hair out.
Back in 1986, there was no internet, no way to know my dirty little secret wasn’t mine alone. Now, you can go online and Google anything, find someone else that has the same thing you do. You can see that there are lots of others out there that have that same shameful feeling you live with every day. Then, I was all alone.
This all started in grade 5. I had long, thick brown hair past my waist. At first, mom and dad thought it was the weight of my hair causing it to fall out. So, I had it cut, then cut it again. The summer between grade 5 and grade 6, I had no hair on the front of my head or underneath my neck. It was a horribly embarrassing time for me. Everyone was asking questions and I didn’t know how to answer them, though my family was very supportive. Grandma would take me to appointments, my aunt’s offered to buy me a wig. I declined. I remember them telling me things like, ‘If someone doesn’t like you for you, then they aren’t worth being friends with.’
At then end of grade 7, we moved from our small town to a new school, a new life, a fresh start. Unfortunately, that didn’t go so well. There was relentless teasing for many years and so many more appointments. I just kept going day to day. I decided that I didn’t want to do anymore medications including the carbon dioxide treatments I was getting. They were painful and my head would bleed. I missed school because it was so painful.
I went to dermatologist, and she did a punch biopsy and that was when I heard that the pulling I was doing had a name. Trichotillomania.
Trichotillomania (trik-o-til-o-MAY-nee-uh), also called hair-pulling disorder. It’s a mental disorder, a body-focused repetitive behavior that involves recurrent, irresistible urges to pull out hair from your scalp, eyebrows, or other areas of your body, despite urges to stop. Even though I tried to fight it, I had to admit to myself that this was me.
When I heard the word, I denied it. Again. I threw a tantrum; there is no other way to describe how I reacted. ‘Why would someone in their right mind pull every hair on their head out and act like they didn’t do it?’ I thought. But, since it’s considered a mental disorder, I guess I wasn’t in my right mind…
I went all through grade 8 and into high school with very little hair. I felt so hopeless. I was depressed and stressed and being teased daily only made it worse.
My grandpa used to tell me that I would never meet a guy if my hair was like this. Yet, in April of 1990, I met my now husband. I had just turned 16, had had a few boyfriends but never serious. I was always wonder if they actually liked me or if I was just somebody to be there for them when they were lonely. I couldn’t figure out why anyone would want to be with someone like me. So, I was cautious. When I met his parents, he was asked, ‘Why are you with someone like her?’ This only confirmed that people didn’t see the real me.
After a month, he told me he was falling in love with me. I still couldn’t believe I had found someone who DID actually love me for me. At 16, most people don’t find ‘the one’, but I did.
At 18, I had our first of 3 babies.
When he was about 8 months old, I started to wear a wig. I had anxiety about what people would say to him about my hair. Would he be teased because of me? I just couldn’t do that to him. So, I started an 18-year game of hide-my-hair, or lack thereof. No matter how much I pulled out, my wig would hide it. I could pull as much as I wanted because no one would see the damage. It was my crutch.
There were a few times it would grow fairly good without me pulling it, but it never lasted and my depression returned and all I wanted to do was sleep my days away. I didn’t feel I was good enough for anyone, including my kids. The medications she gave me for depression ended up having an effect on my pulling. In fact, I was hardly pulling at all. Not before long, I was feeling better about my life. I was so excited. It was an end to this horrible journey! But it would prove to be short-lived. My doctor soon changed my medication.
At that time, we had two boys and a girl. I was working full time, had just moved into a new place, and my grandma had passed away. I was devastated. I was quickly seeing that stress was a huge factor in how much I was pulling. Wearing my wig became a nightmare. It was hot, it was itchy, and I hated it. I hated that I couldn’t ride a bike with my kids, that if we went swimming I couldn’t horse around with them. I was a prisoner of my own body, and I put myself there.
In 2008, I started to do some research into trich. I knew I needed to figure out a solution.
I found a website that described everything I was feeling and experiencing. I learned that there were other people who were suffering from it too. I printed off some pages, showed it to my parents and husband, and asked them if they thought that was me. They all agreed. So, I made a doctors appointment. I took my sheets with me and showed her. She had never heard of Trichotillomania and had to research it before we went any further. I was sent to a therapist who helped me come to terms with my pulling. Some of the things he wanted me to do bothered me. ‘Imagine a wall at your shoulders. Your hands aren’t allowed above that wall.’
If I was going to stop pulling, I needed to live life normally but keep it under control. So, I started journaling. Along with the medication I was out on, and a lot of family support, I started my recovery.
I started by looking into the 12 steps of AA and tried to apply them to my situation. I wrote a book about everything up until that point, and printed it for my extended family. I became accountable to all those people. If I screwed up, I would feel like I failed them all. I had a lot invested in this… it was my life and I needed to change it.
I always had a low self esteem, hated what I did to myself every day for years and years… I wasn’t skinny, I wasn’t pretty (in my eyes). I wore a wig and I just felt horrible about myself all the time. I hoped by being able to stop pulling, it would make me feel better about myself overall. When I got married, I wore a wig… I couldn’t go get my hair done, I couldn’t do so many things in my life because of what I was doing to myself.
After I started journaling, I realized how much stress was in my life.
I wrote about my day, how I felt throughout the day, any stress I had, how much I pulled, when and where. I had a tally of how many hairs I pulled that day at the top of the page. I began to see progress. I never really found out what the initial trauma was that triggered my pulling to begin with.
I asked the doctor one day after a few months of not pulling, ‘What happens now? When I am cured, how do I come off the medications?’ I was told that once I started to come off the medication, I would have to go through all of the struggles but without the help of the drugs that suppressed the urges. I decided I didn’t want to do it twice. I wanted off the medication once and for all. He told me that wasn’t a good idea, I had done so well. ‘Why do you want to stop now?’
Nonetheless, I weaned off the medication and struggled with small setbacks.
My family was my rock. If I had my hand in my hair, they told me or made me aware of it. I became so very conscious of my hands that I was able to stop pulling and grow my hair out to all one length.
I had set my goal date to throw my wig away on July 1, 2009. Easter weekend was around the corner, my neighbor had a friend that cut hair and was always coming to cut her kids hair. I asked her to see if she had time to cut mine. I walked out, tossed my wig in the garbage bin, and proceeded to get it cut. The first actual haircut I had had since I was 12 years old…
That Easter Sunday, I walked in to my family gathering, for the first time in 17 years, without my wig. I was proud, I was scared, and above all else, I was happy!
It’s been 33 years since that first hair pulled. I have been married, have 3 kids, 2 grandchildren and I’m loving life. I love myself. I love that I was able to beat trich and I am willing to do whatever I can to bring another mental disorder to the public eye so people who have this won’t have to hide.
I have realized that trich doesn’t define me. I am open to talking to people about it now. I’m not embarrassed. I just want to educate people. I still have my bad days, but I can control them now. I can stop myself and not beat myself up about pulling a few hairs.
I remember the day I went swimming with my kids after I threw my wig away. I dived under the water and cried. I cried when I rode a bike with them and felt the wind in my hair. It was such a simple thing, but I missed it.
Letting life be controlled by something like trich is easy. Figuring out how to overcome it isn’t. My aunt told me once that she believes someone needs to want the help in order for something to stick. I was at rock bottom when she said that to me. And I believe it. You have to want to quit pulling and commit to whatever needs to be done in order to be successful. Everyone is different and something that helps me won’t help someone else.”
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