Understanding Trichotillomania: The Do's & Don'ts
Updated: Aug 1, 2020
I’m sitting at a desk, where I should be writing, researching, computing, or creating, but I can’t. I’m stuck. My arm is sore from holding my hand up to my head. My head feels like it’s on fire. My fingers have woven themselves through the roots of the hair on my head, in search of their prey. One hair feels wiry and coarse, unlike its soft and thin neighbors. My thumb and middle finger wrap around the hair, feeling from end to follicle, twisting to separate it from the other hairs around it. An unexpected pop of pleasure releases as a follicle disconnects from the scalp. My brain, oblivious to what’s been going on, now turns its attention to my misbehaving fingers, begging them to stop. It consciously orders my fingers to feel around my scalp, evaluating the damage they have done. One side of my back hairline feels more thinned out than the other, and I begin to worry that the lopsidedness will draw attention. My fingers take care of that for me before I have even finished the thought. I look up at the clock, realizing I’ve just lost 5 minutes of my life to a battle between my mind and my fingers.
**
Research has shown that around 1 in 50 people have or will experience trichotillomania in their lifetime.
That is a lot of people in this world. So why do I feel so alone in this? I only know of a handful of people who have ever opened up to me about their trichotillomania or other BFRBs (body focused repetitive behavior). Honestly this doesn’t surprise me.
Trichotillomania is extremely hard to talk about.
It’s so easy to feel alone in having trichotillomania because most everyone who has trich isn’t advertising it to the world. We hide it.
Why? Because people who don’t deal with trich do not understand it.
The most common misconception about hair pulling is that it’s a bad habit, like chewing fingernails (which I also do / have been able to quit fairly easily). People ask me why I can’t just stop. They tell me I’m lacking self control and discipline. They blame me.
This is not a bad habit. Trichotillomania is a mental disorder. It does not follow logic.
It works like this: I get a strong feeling of pressure in my head (like if you've ever worn a tight ponytail all day long), or sometimes it feels like my scalp is burning or stinging. The only way I can relieve this feeling is to pull, and once I start it's incredibly difficult to stop. Sometimes, I don't even realize I'm doing it until I've already lost a substantial amount of hair.
You might assume that seeing the effects of hair pulling and dealing with hair loss would be a punishment that would deter further pulling, but unfortunately this is not the case.
A common feeling among those who experience trich is that people often pull because they are anxious about how much they’ve already pulled. Then it multiplies.
For me, this is further complicated by my alopecia. It’s easy to see the irony in the fact that I’m simultaneously suffering from an autoimmune disorder that makes my hair fall out AND I also pull my hair out. These don’t mix well.
**
My family has invested so much time and spent so much money on dermatology, medications, therapy, and hair loss concealing products... I can’t imagine how frustrating it must feel to watch me pull my hair out.
They want to help me, but for a long time their help was more of a hindrance to my pulling.
If friends and family saw me pulling, they would beg me to stop. They would say things like, “Caroline, please stop pulling your hair,” “Caroline, you’re pulling your hair,” “Caroline can you at least not pull when I’m talking to you?”
All I ever want is to stop pulling. When people ask me to stop, I wish they knew that it isn’t a choice, that I’m trying as hard as I can.
Hearing these requests to stop pulling used to make me so angry and frustrated. It further perpetuated the urge to pull, as I contemplated how they could continue to ask me to stop pulling after so many years of seeing me struggling to stop.
When they asked me to stop pulling, it made me feel like they didn’t understand trichotillomania. Their polite reminders only simplified this insanely complex urge into something that can be mitigated by a request to stop.
And at the same time, I knew that they did understand. They understood that pulling is often subconscious, and they were trying to let me know what was going on so that I could take control of my body. It just wasn’t that simple.
I had given them mixed messages for years. I had asked for their help, but I got so angry every time they tried.
I needed to find them a new way to help.
**
Recently, I learned that the way in which people react to my hair pulling can make a world of difference.
Showing that you care, understand, and are prepared to offer alternatives to pulling is key to being a positive source of help to a person struggling with trich.
When my boyfriend sees me pulling, he holds my hand. Sometimes he tries to distract me, he’ll ask me to pass him something that requires two hands, or he’ll suggest we get a change of scenery. If he can see I’m stressed, he’ll try to help me out by talking me through it, or getting me a hat or scarf to cover my head so I can focus on dealing with it myself.
No matter the situation, he actively extends compassion. He lets me know that he understands. He acts, without bringing my attention back to my hair. And in doing so, I am able to work through my urges with a sense of peace and support.
These positive experiences have really gotten me thinking about how helpful outside support actually can be in dealing with trich, when done in the right way.
**
There are so many people on this planet who deal with trichotillomania, but even more people who live their lives around us, wondering what to say, or how to help us.
I’ve made a guide of the do’s and don’ts for interacting with people with trich, from my perspective of what has and has not been helpful.
(This blog is also a really helpful resource)
**
Lately, I feel a responsibility to share as much as I can about trich, alopecia, and hair loss in general, because I’ve always wished people would understand what I’m going through. I’ve wished for empathy. I imagine others with trich have made similar wishes.
But these wishes will never come true if we don’t educate those around us. With education comes compassion. That’s a huge step towards destigmatization.
My challenge to you, whether you do or do not struggle with trich: talk about this taboo subject with 3 friends this week. Try to help them understand, or work to understand together. If you don’t feel ready to talk about this, do your research. Find a way that works for you to share your story, or read others’ stories.
Trichotillomania affects so many people, and it’s too often worsened by the anxiety of feeling alone or misunderstood. Do your part in spreading the word. Let’s make it known that we are not alone.
Let’s continue this conversation! Share your story or ask questions in the Forum.
For more information about trichotillomania, visit my FAQ page.