Life with Trichotillomania

As far back as I can remember, I have always pulled my hair (trichotillomania). There is a picture of my mother holding me when I was probably about 2 with and my fingers are twined and twisted in the back of her hair. Why, do I do this? Even now 40+ years later, it is very hard to understand or even explain.

The medical definition of trichotillomania is self-induced loss of hair, and is classed as an impulse control disorder. It is in the neighborhood of obsessive-compulsive in the sense that it is associated with irresistible urges to perform unwanted repetitive behavior. But with hair pulling it is not a focused act, but more of an automatic, unconscious act. And it is so much more complicated.

Over the years I have found ways to cope and deal with what I do to my hair. When I was a child, my mother said that she could always tell how I was dealing with life and things by how my hair looked. If it was fairly full, with a nice texture then she knew things were okay. If it was broken, a few bald spots, she would know that things were stressful, and all was not right in my world. For me stress was and is my trigger. While I relax, my fingers go to work in my hair. On reflection there is something soothing about the motion of twining hair unconsciously through your fingers, then a knot forms or a finger gets stuck, and then pull. The next time you are at a stop light, look around, you will probably see a woman with her fingers twining in her hair. The difference between her and me...I'll keep at it until there is a knot, and then pull. At the instant of the final release of hair from your head there is a indescribable sense of relief, and calm that lasts for an moment or two. And then you want more. After, you will realize what you have done, and as years pass, you learn how to move from place to place on you head so that no one place –usually- gets too thin or messy looking. And it was frustrating for everyone. My mother who didn’t understand what was going on, but who wanted to “fix” her daughter, and me who didn’t know that there was anyone else who did this, and didn’t know how to stop.

As an adult, I have gotten creative on how to hide what I have done to my hair. In the winter I usually wear wigs. Those are fun and from October to May I have very little stress about what my real hair looks like. With wigs, I can have the hair that I wish I had. It is true when it is said that a woman’s glory is her hair. Confidence, poise, and the opinion of others is really tied to how someone looks, and how their hair is kept. I really wish that I had been brave and bold enough to wear wigs in high school, and college. By wearing the wigs, it allows my hair a rest from my attacks, and a chance to grow, and get “normal” looking for summer hot weather. In the summer I wear what I call my “short” look. When my hair is short, I can’t twist it, I can’t destroy it. Or at least, not as much.

Sedentary activities are my downfall. Lying in a bed relaxing to fall asleep at night is my biggest. To keep my hands out of my hair, I sleep with an old wig under my pillow. My fingers can find it and twist to their unconscious delight. This is not always successful but, 60% of the time it does work. During the day, watching TV, reading a book, sitting through a meeting, lecture, or movie, my fingers go looking for hair. And most of the time, I don't even realize they are twisting in my hair. My personal experience with this condition is what has lead me to find knitting, spinning, and the world of fiber.

My “sense” of well being, peace and contentment is what can be found at the end of my finger tips. If my hands are busy, they can’t be in my hair. Knitting is the ultimate portable non-medication treatment for me. I have found that if my hands are busy, I can then concentrate on the movie, the lecture, the whatever, without wondering when can I get something to twine through my fingers and get a peaceful feeling. When the urge, the need, comes over my fingers for texture, twisting, trying to control and manage the need becomes almost an all consuming battle. If I’m somewhere where I can feel the tension building, if I take out a set of needles, and yarn and start the repetitive, rhythmic motion, I then can focus and concentrate on the lecture, sermon (yes, I have even knitted in church), movie, conversation, or whatever. Socks are the perfect project for this therapy. They are small, if you stick to basic no-nonsense then not much counting is required, and they tend not to be much of a distraction to others. I always have socks with me. They work well for gifts at the end of the year. That is where the “sticks” part of my “name” has come from. The “wheels” part is from my spinning wheels. I have always wanted to learn to spin yarn. There is something about taking raw fiber and turning it into yarn that you have designed. But that story is for another hubpage. Yarn, knitting, fiber are my therapies for dealing with my life with trichotillomainia.

I hope that this has given you just a little bit of an insight into what is a strange, confusing, and little understood condition.