“I am always trying to cover my bald spots. I wonder if others notice them; and if they do, will they point it out? Will I have to formulate a creative fabrication to explain myself?”
Alec Stanley
BY ABBIE SIZER
I began methodically pulling out my hair strand by strand in the tenth grade. I don’t remember exactly how or why it started. I’d search for a strand that felt thick, coarse, kinky, and bent, as though it 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, and again, and again. However, no long-lasting joy came from my pulling.
Why did I feel so compelled to pull out my hair in 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 crazy for my behaviour. My pulling amounted to bald spots and my hair was thinning on the top of my head. I felt crazy for my behaviour and could not account for it.
I turned to the internet to explain my inexplicable behaviour. 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 that I was probably vitamin-deficient. 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 (I wish it was); the hair pulling is not better explained by the symptoms of another mental disorder.
Researchers have estimated the prevalence rate to be between 1-3% across the developmental lifespan. 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 that my behaviour had a name. I felt alone in my behaviour, 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 behaviours 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 trich and there is no cure.
One would probably assume that 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 behaviour 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; and if they do, will they point it out? Will I have to formulate a creative fabrication to explain myself? If I told the truth, I assume that 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, and I have begun to come to terms with my lifelong struggle with this disorder. However, I have difficulty accepting that I do this to myself. If it were chemotherapy causing my hair loss, at least that is socially accepted. But it is only stigma and shame that I wear on my head.
Often exacerbated by stress, trichotillomania distracts me from my work, studying, 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 5 years and when I went for a cut, the stylist was afraid to handle my hair because of all the 'breakage.'
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 behaviour by calling attention to it when I’m caught in the act, as though they were doing me some sort of favour. I understand that their intentions are good; however, it only brings me shame when the behaviour I am already aware I am doing and already embarrassed of is highlighted. It is a non-productive suggestion.
Friends, family, 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 behaviour.
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 towards becoming a better person, and that includes my efforts to reduce and control my urges to pull.
I already know what I am doing, so 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, please guard this information and don’t share it with others.
If we are close friends, offer to help me with my hair. I can’t see the back of my head and it requires strategic effort to conceal those sparse spots I cannot see.
To my lover, I ask you 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, or for three days, or 1 year.
The roots of trichotillomania run deep. It has been 11 years since I began pulling. Today marks 64 days pull-free. It is a 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 that I will never be fully recovered from this chronic disorder; I will always be in recovery.
Abbie Sizer is an MA candidate at the Institute of Feminist and Gender Studies at the University of Ottawa. She is an anti-oppressive, kinky, sex-positive feminist and an advocate for queer and disability justice. She has an unbounded love of dogs, coffee, reading, and knitting.