I have a condition called trichotillomania, a mental illness that not a lot of people are aware of. Almost everyone, by the time they arrive at university, has heard of mood disorders and eating disorders, even obsessive compulsive disorder, but no one seems to know about body-focused repetitive behaviours (BFRBs).
BFRBs are impulse control disorders and are thought to affect around 5% of the population. They are related to obsessive compulsive disorder, but in the case of BFRBs the compulsions are always focused on the sufferer’s own body, and often result in injury or damage to one’s appearance. My disorder, trichotillomania, involves compulsive hair pulling. While other people may joke about ‘tearing their hair out’ when they are stressed, it’s an everyday reality of life for me.
I have suffered from trichotillomania since I was around six or seven years old, but I didn’t find out that it was a real condition with a name until I read an article in 2009 on Louise Thomas. Like me, Louise had suffered from trichotillomania from a young age – she was two years old when she began pulling – and the condition had progressed to a stage where she had almost no eyelashes left. At the age of 19, Louise had undergone the UK’s first ever eyelash transplant, where hair from the back of her head was transplanted into her eyelids to replace her damaged lashes.
I couldn’t believe my eyes. There was someone else out there, doing the same self-destructive thing as me. And that thing had a name. The relief that I wasn’t alone was incredible. Vain as it may seem, that’s why I’m writing this article now. If you read this and recognise yourself in my words, please know this: you’re not alone, you’re not weird, you’re not weak, and you’re not crazy. Mentally ill, yes, but not crazy.
Although it is not as well publicised as other mental health conditions, trichotillomania is perhaps the best known BFRB, thanks mainly to vlogger Rebecca Brown, aka Beckie0, whose Youtube video ‘She Takes a Photo: 6.5 Years’ went viral over the past two years. There are others, such as dermotillomania (compulsive skin picking), trichotemnomania (compulsive hair cutting), onychophagia (compulsive nail biting), dermatophagia (compulsive skin biting), and rhinotillexomania (compulsive nose picking), which are even more obscure.
Many BFRBs are linked to stress and anxiety. In my case, one of my major triggers for pulling is perfectionism. If something is not ‘right’ in my life, I can find myself searching for hairs that don’t feel ‘right’ so I can pull them out. Prior to pulling, I feel tense and almost incapable of resisting the urge to pull. The instant that the hair leaves its follicle brings relief from that tension, followed by a wave of shame. The shame comes not just from the condition itself, but also from people’s reactions to the condition.
I remember vividly the day that my dad moved our sofa away from the wall and discovered a massive mound of my hair behind it. My parents didn’t understand why I would harm myself in that way. They had always told me that I was beautiful and loved: how could I be so unhappy? I couldn’t explain at the time, but now I know that I suffer from depression and anxiety as well, which make it far more likely for me to remember and dwell on the negative experiences in my life. I internalised criticism and became my own bully.
These are common experiences, but not everyone experiences trichotillomania in the same way. For example, some people pull out only their eyelashes, whereas I pull both my eyelashes and my scalp. Other areas that sufferers may pull include eyebrows, arm hair and pubic hair.
In order to prevent myself from pulling, I employ various coping mechanisms. I put Vaseline on my eyelashes to make them harder to grip, and keep my nails short for similar reasons. I also distract myself from pulling by knitting, crocheting and playing with a toy called a Tangle.
As well as these coping mechanisms, there are various treatment options available for BFRBs. Cognitive behavioural therapy can be helpful for some people, although I have not yet tried it myself. Medications such as fluoxetine can also be effective. It hasn’t cured me, but it has reduced the urge to pull.
It took a long time for me to be comfortable telling people about my condition. The reaction of my parents to the hairball incident as well as the attitudes of some of the commenters on Beckie0’s videos made it an intimidating prospect. Add to that the internal bullying coming from my anxiety and depression, and it’s a wonder I ever spoke up about my condition at all.
I’m so glad I did though. I’ve found a surprising number of my friends are in similar situations when it comes to their mental health. I won’t deny that some people can be dismissive or hostile towards conditions they don’t understand, but those close to me have made the effort to be supportive, even if initially their lack of knowledge resulted in incisive and sometimes hurtful questioning. If people are worthy of your love and respect, they will accept you, mental illness and all.
I very much doubt that I’ll ever completely recover from trichotillomania. I’ve lived longer with it than without it. The most important thing to me now is that I’ve found my own ways of coping with my condition, and I’m no longer afraid to talk about it. For many stress-related mental health conditions, part of their power over the sufferer can result from the fear of stigma. I’ve found that by speaking out, it is possible to break through that part of the condition and regain some sense of control.
IMAGE: Kim S