Trichotillomania isn't an easy word to say and neither is it an easy topic to talk about. Pronounced trick-o-till-o-may-nee-uh, the condition, also known as hair pulling disorder, causes sufferers to compulsively pull out their hair and often involves intense feelings of shame or embarrassment. It's thought to affect between one to two in 50 people during their lifetime, according to The TLC Foundation for body-focused repetitive behaviour, and yet many people have never heard of the condition. Luckily this week is international No Pulling Week, which aims to raise awareness of Trichotillomania (TTM). In the UK alone, there are an estimated 840,000 women suffering with the condition. The initiative was founded around 20 years ago by Lucinda Ellery, a hair loss expert with over 30 years' experience of supporting women with hair loss and managing their symptoms. We spoke to her about the reality of life with TTM, how non-sufferers can help those with the condition and what she's hoping to achieve through her campaign.
Why did you launch No Pulling Week?
I felt desolate for everyone who felt alone, isolated and who had no one to talk to about it, so I thought it would be nice for sufferers to meet others in the same position. I used to pick and scratch my own skin when I was younger, which is related and known as excoriation disorder.
Why do people pull their hair out? Where does the urge come from?
It’s an impulse control disorder that's considered to be genetically predisposed, i.e. it's passed through your genes and runs in families. It’s an irresistible urge to pull out your hair and the aim is to calm you down.
Who is most at risk of developing TTM?
The people who are prone to it tend to be highly intelligent and deeply sensitive – a grotty combination – and they’re usually very attractive. It’s considered a predominantly feminine disorder that kicks off around puberty at around the ages of 10, 11, or 12.
Are there environmental triggers?
The word “trigger” is a good one because while people are genetically predisposed to developing it, triggers can vary from losing a grandfather to losing a goldfish. Stress is a very common trigger – as your stress levels rise, sufferers may go to into an automatic response. A lot of sufferers pull their hair out in an almost trance-like state and it would be fair to say that at that moment they're not aware of what they're doing.
How can hair pulling affect a sufferer’s self esteem?
It has an immeasurable impact. You can't underestimate the power TTM has to people diminish people's confidence. The anxiety is of an extreme nature. For many women, their hair is their crowning glory and it holds power over us psychologically. According to a study by Yale University in 2000, having "bad hair" makes us feel less confident, socially insecure and makes us criticise ourselves. Hair is also meaningful in cultures around the world. There are poems dedicated to it. In some cultures you have to hide it and only your husband or brother is allowed to see it because it's considered something of great beauty. Women who collaborated with the enemy during World War II had their heads shaved, tarred and feathered as a punishment. Women who become nuns often cover their hair or cut it short. All of which show that hair is a big deal.
Where should people suffering in silence go to get help?
You would normally go to a doctor and the first step should be applying for cognitive behavioural therapy (CBT). Sadly it’s still not on many people's radar because as far as doctors are concerned it's not a life-threatening condition. But even though TTM itself isn't life-threatening, Trichophagia is when people eat their hair and because it’s not digestible, it clogs up your intestines and you can die.
Is there anything sufferers can do to help themselves?
For me the main thing is ridding yourself of the shame, humiliation and embarrassment. I constantly remind sufferers I meet that they're not taking heroin or downing bottles of vodka, they're pulling their own hair. I try to get them to change their perspective. Meditation is a great way forward. Learning to do breathing exercises and hobbies such as dance and exercise seem to shift their energy elsewhere and take their mind off it. Things that keep your hands busy, like learning the guitar, crochet and tapestry, can also be really effective.
How can friends and family help people who are suffering with TTM?
By treading with extreme caution. Sufferers are extremely sensitive to being caught doing it – there are huge amounts of shame and guilt involved. If you think someone might have it, bring it up with extreme caution, compassion and understanding. Don’t force them to talk about it, but explain that you’re there if they want to. All you can do is support them.