What I Ask From My Friends and Family as Someone With Trichotillomania
I began methodically pulling out my hair strand by strand in the 10th grade. I don’t remember exactly how or why it started. I’d search for a strand that felt thick, coarse, kinky and bent. Those that did not belong in my smooth mane of hair. Running my fingers through my hair, I would locate a single hair and pluck it from my head.
It never hurt, at least not initially. The sensation in relieving myself of the built up tension felt prior to pulling, the “pop” that occurred when I had known I had plucked the follicle from my scalp — it felt good. Albeit, that joyous feel-good moment was fleeting. So I did it again, again and again. However, no long-lasting joy came of my pulling.
Why did I feel so compelled to pull out my hair is such a precise way? Why did it feel good and not hurt? Why did I continue until mounds of hair were on the floor below me? I felt guilty. My pulling amounted to bald spots and my hair was thinning on the top of my head. I felt like I was crazy for my behavior and could not account for it.
I turned to the internet to explain my inexplicable behavior. I refuted my symptoms because they pointed to a chronic disorder. I tried to conceal the evidence. I would often have to discard a pile of hair below me after a long session of pulling. When questioned by my parents, who had detected my noticeable hair loss, I explained it was probably a vitamin deficiency, half trying to convince myself. I was ashamed and embarrassed. The stigma of mental illness caused me to deny what I had come to discover.
Trichotillomania (pronounced trick-o-till-o-mania), sometimes TTM or trich for short.
The DSM-IV criteria for diagnosis defines trichotillomania as the recurrent pulling out of one’s hair, resulting in hair loss (check!), repeated attempts to decrease or stop hair pulling (I wish I could!), the hair pulling causes clinically significant distress or impairment in social, occupational or other important areas of functioning (yes, yes and yes), the hair pulling or hair loss is not attributable to another medical condition, the hair pulling is not better explained by the symptoms of another mental disorder.
Researchers have estimated the prevalence rate to be between 2 to 3 percent of the population. However, this is likely a modest estimate. Shame and embarrassment are among the greatest effects of this disorder, often preventing people from being ‘out’ with their disorder or from seeking treatment.
I was shocked to learn my behavior had a name. I felt alone in my hair pulling, thinking it was a curious, strange phenomenon unique to me. While it was comforting to know there was a community of others who shared my experience, I still felt alone. Though, I felt some comfort in my self-diagnosis. I could attribute my behavior to a force outside of myself, as though I couldn’t help myself. I was just “wired’”that way. Unfortunately, not much is known about trichotillomania and there is no cure.
One would probably assume I find my bald spots and thinning hair bothersome, and while I do, the shame and embarrassment far outweighs my concern for my vanity. I am aware of my behavior and I hate that I pull my hair out. I want to feel a sense of control over my disorder. It dominates much of my life. It makes me feel guilty. It makes me feel crazy. It makes me feel ugly. It detracts from my confidence.
As a woman, losing my hair feels like a loss of my femininity and identity. This may sound trivial, but growing up as both queer and lower-middle class, it matters to me that I appear polished and put together. It is not a matter of vanity but a matter of survival.
I am always trying to cover my bald spots. I wonder if others notice them. If they do, will they point it out? Will I have to formulate a creative falsehood to explain myself? If I told the truth, then I assume I would be found crazy, perhaps even mentally unstable.
Truthfully, I can accept my bald spots and thinning hair. I have learned to fashion my hair in ways to make it less obvious. I have begun to come to terms with my lifelong struggle with this disorder. There is stigma and shame worn on my head because somehow I am supposed to control my mental illness.
Often exacerbated by stress, trichotillomania distracts me from my work, studying and from my social life. Really bad hair days have been a barrier to a social life. I missed my senior photos in high school because my trich was so bad. I avoided a salon for five years and when I went for a cut, the stylist was afraid to handle my hair because of all the “breakage.” I don’t let lovers stroke my hair, a touch I crave so deeply.
I have often been asked how I can be helped. Often others interject with their own suggestions, most frequently suggested is “just stop” and “wear a hat.” As I type these words, I am laughing because I only wish it were that easy. Throughout my life, those close to me have tried to police my behavior by calling attention to it when I’m caught in the act, as though they were doing me some sort of favor. I understand their intentions are good; however, it only brings me shame when the behavior I am already embarrassingly aware of is highlighted. It is a non-productive suggestion.
Friends, family and lovers, this is what I ask of you:
I want your support. I want to feel understood more than anything. Educate yourself about trichotillomania. I don’t want you to feel disgusted with me because I am already disgusted by my behavior.
Acknowledge my struggle and tell me I am beautiful and strong. Be sensitive. Navigating this terrain is like navigating land mines. I don’t know what is going to hurt me or when because some days are better than others.
Please, don’t offer unsolicited advice. I am not crazy. I am smart and self-aware, and I am always working toward becoming a better person, which includes my efforts to reduce and control my urges to pull.
I already know what I am doing. Please, don’t call me out when you catch me in the act because if I could stop, I would. Don’t use phrases like, “I’m so OCD.” Such statements diminish the very real reality of mental disorders.
If I feel safe enough to share my disorder with you, then please guard this information and don’t share it with others. If we are close friends, then offer to help me with my hair. I can’t see the back of my head and strategically concealing my sparse spots is a challenging art.
To my lover, ask to run your fingers through my hair. It’s been so long since I’ve allowed another to play with my hair. When I’m going through a pull-free period, congratulate me when I tell you I haven’t pulled all morning, for three days, a month or one year.
The roots of trichotillomania run deep. It has been 11 years since I began pulling. Today marks 102 days pull-free. It is a near constant effort to fight against the urge, but I am making progress. While this is a remarkable improvement for someone with trichotillomania, it is important to know I will never be fully recovered from this chronic disorder. I will always be in recovery.