The Connection I Have With My Mom Because of My Trichotillomania
Editor’s note: If you struggle with a body-focused repetitive behavior, the following post could be potentially triggering. You can find resources at The TLC Foundation for Body-Focused Repetitive Behaviors.
Since my early teenage years, my mom and I have been very close. I was incredibly reserved and had very few friends in school, so my mom was often my closest confidant and she sometimes was my only friend. When I first started struggling with trichotillomania though, it put a strain on our relationship. I started pulling my hair out at age 11. When I was 14, I had a big spike in my pulling, and for the first time in my life, I had pulled so much to the point of large bald spots.
My mom didn’t have the slightest idea how to handle it, and her actions most often harmed more than they helped. She would yell and reprimand me for pulling and comment on how “bad” my hair looked. I remember one particular incident, about a month or so after getting my first bald spot: I was sitting on the floor in the living room, while Mom sat above me on the couch. I had my hair up in a ponytail to hide the hair missing on the crown of my head. It must not have covered it well enough though, and Mom obviously noticed. She started feeling around my head and freaked out, sobbing and exclaiming, “Oh my God!”
Three years ago we were at a workshop for trichotillomania and related behaviors. My mom shared with the group that she felt a loss of my hair like she lost a part of her daughter — that her daughter was known for being the one with the beautiful curly hair, and for me to go from that to having bald spots was really painful to watch. I was sitting right beside her and I teared up when she said that. It was the first time I was hearing that; I didn’t know she had felt that way. However, it allowed me to see things from her perspective. I realized then that this was just as hard on her and she had her own struggles and emotions in dealing with this as a parent.
In 2015, we attended our first TLC Foundation for Body-Focused Repetitive Behaviors (BFRBs) conference. I was really excited. I got to meet other teens just like me, and Mom met other parents. I felt much less ashamed. I didn’t feel like a “freak” anymore because I knew I wasn’t “the only one.” I made so many close friends who deeply understood me, with whom I could rely on for support. The conference helped Mom and me tremendously in terms of acceptance. That weekend would forever change the course of our lives.
I think that weekend was when she finally “got it.” It all clicked with her. She now understood I couldn’t “just stop” pulling. She understood I wasn’t choosing this, and she understood the impact trich had on me. But perhaps the biggest impact of the conference was that the door of communication between us had been opened. From that point on, I felt much more comfortable confiding in her and talking about my trich, or about anything else at all actually. She started listening to me without immediately reacting on her emotions. I expressed how it felt when she commented on my bald spots or asked if I’d been pulling a lot lately. With my frequent insistence, she learned to refrain from making remarks about my appearance or pulling.
She has since told me that, as a parent, she felt helpless not being able to do anything to “fix” this, but she knows now that the best thing she can possibly do to help me is to simply provide me unconditional love and support. She sees that I am still beautiful and still her same daughter, with or without hair. And she sees that neither my hair nor my trichotillomania defines me.
We’ve been to every TLC conference since our first and it’s always such a special experience. Every April, we leave our suburban Long Island town and travel to another city across the country to spend an extended weekend with hundreds of fellow trichsters and parents. They truly are like family now. The conference has become the highlight of our year and our annual vacation. It’s held in a different location each year, so we’ve been to Washington DC, Dallas and just last month was St. Louis.
I’ve come a long way since that first conference … from the timid girl Mom had to practically force to socialize with the other teens, to the valiant young woman who delivered a speech to nearly 500 people; this year, at the closing ceremony, I spoke on a panel, sharing my story of my personal growth and recovery. Mom, who was sitting right front and center, was crying the whole time. Truthfully, I thought I would be too because I get so emotional over this stuff, but I managed to get through it only getting a little choked up. As soon as I returned to sit with Mom afterward, the well broke. We cried and hugged for what felt like an eternity. It was truly the most special moment in my life that I’ve had with her.
It’s unbelievable how far we have come — that all the fights and the yelling and tears in those early years feel like a distant hazy memory to me now (to be fair, we do still have a lot of tears now, but out of joy and relief). At the risk of sounding cliche, my mom has been my number one supporter through all of this. But you don’t understand though: words don’t even come close to doing justice in explaining how much stronger and closer we have become, because of me having trichotillomania. We’ve been through hell and back, but we were always in it together, and for that, we have such a unique and tight bond that far exceeds most. I am always telling her how grateful I am for her and everything she’s done for me. I wholeheartedly mean that every single time. And she’s always telling me how proud she is of me.
You see, the thing is, this is not just my journey, it is our journey. Together.
I love you, Mom, more than I will ever be able to express.
Editor’s note: This story has been published with permission from the author’s mother.
If you or a loved one is affected by body-focused repetitive behaviors, you can find resources at The TLC Foundation for Body-Focused Repetitive Behaviors.
We want to hear your story. Become a Mighty contributor here.
Images via contributor. Main photo courtesy of Photography by Jillian Clark, used with permission from The TLC Foundation for BFRBs.