Pulling your own hair out: What it feels like to live with Trichotillomania
bt.com 2nd Oct 2015
We meet Ruth Walters, who has suffered from TTM for 10 years but has been given the chance to have a full head of hair again.
You might never have heard of it but 3% of the world’s population suffer from Trichotillomania (TTM) – the overwhelming urge to pull your own hair out.
Largely, it affects women and there’s often a huge amount of secrecy and shame attached to it. The majority of sufferers pull their hair, eyebrows or eyelashes as a coping mechanism for anxiety or other difficult emotions, sometimes subconsciously.
It’s so rarely spoken about that only 10% of sufferers seek help for TTM but a new campaign International No Pulling Week, which starts today, aims to raise awareness of the condition many people, largely women, silently suffer from.
Ruth Walters, 24, has suffered from TTM since she was 14. By the time she was at uni it became impossible to hide the bald patches on her head. She says it first happened as a coping mechanism for being sexually assaulted after her drink was spiked on a night out and during her parents’ divorce.
“The first time I remember being sat in my room, pulling strands of my hair out, and laying them next to my computer to look at,” she says. “It was painful, but a nice, satisfying pain. I’d search for a specific hair with a big root on the end.
“I started pulling from my parting, but my sister noticed and said I needed to stop, so I changed where I was pulling from and hid it better.
“It’s hard to understand but it was like a security blanket, it made me feel safe and contented. I’d go into a trance-like state while I was pulling, sometimes for hours. I’d do it every single day, it wouldn’t matter if there were people around. Afterwards I would feel disgusted at myself, ashamed.”
The rest of her family of course noticed what she was doing and tried to help but found it difficult to understand why Ruth – now a healthcare assistant – couldn’t stop.
During one A-level exam, Ruth pulled so much that the floor around her desk in the exam hall was covered with her hair. Eventually she’d pulled so much from her crown that she could no longer hide it and her older sister took her to a hairdressers to have a custom hairpiece made.
“I had relationships but it impacted hugely on them. I told boyfriends I had alopecia,” she says.
Ruth says TTM is hard to talk about because it’s a “bizarre thing to do”.
A psychology graduate, she actually did her dissertation on the condition to try to understand it better. She’s also undergone a lot of counselling sessions, which she says helped with her anxiety but didn’t have any impact on how much hair she pulled out.
Then one day she watched a Channel 4 documentary on TTM, Girls On The Pull, featuring Lucinda Ellery, who specialises in a special hair replacement system called Intralace. It involves pulling any hairs that remain through a piece of mesh, and attaching real human hair to give sufferers back some confidence, as well as making it far more difficult to pull their hair out. When their real hair has grown back, the mesh is removed.
Lucinda, a hair extension technician, helped develop the system after one of her clients admitted she pulled her own hair out.
“The research that’s been done on TTM suggests it’s mainly women (82%) and they’re often highly intelligent, highly sensitive and often very beautiful,” Lucinda explains. “I’ve met a 52-year-old who lost her husband and started pulling for the first time, and many who are 27 to 30, at a stage of their lives where life is taxing, they’ve left home, have relationships, children or mortgages.”
Lucinda uses the system herself, after losing her own hair to alopecia after her father died. She treats clients with all kinds of hair loss – from cancer treatment, lupus, scars, alopecia as well as TTM.
She says her studio isn’t just providing a physical solution to hair loss, but also a sanctuary where the women can feel safe, talk through their problems and meet others. Lucinda holds group sessions and even cocktail evenings. She tries to help deal with the impulse to pull and regain control. And at the studio there seems to be a real focus on positivity, on the clients feeling good about themselves again.
“So many say to me ‘I honestly thought it was just me’ and they’ve never told anyone they pull their hair out,” she says. “There is no known cure for TTM, but when women come to me it’s because they’re ready for a change, and getting hair back gives them a chance to stop and take action.
“It’s not a permanent solution of course, but it’s helping the women, it’s giving them back their self-esteem.”
For Ruth, watching the documentary about Lucinda’s studio was the first time she could see an answer. Her mum took her for a consultation at Lucinda’s studio in Manchester who said the Intralace system would work for Ruth. There was one issue though, she couldn’t afford it.
“I needed £2,000 to have the system put in and then more to have it tightened every six weeks for a year. I asked my GP if I could get funding on the NHS and was referred to a dermatologist in April last year, who said he’d never seen a case of TTM so bad in his entire career. I’d pulled so intensely for nearly 10 years that I risked permanent damage. But my application for funding was rejected,” she says.
It was around then that Ruth finally told her boyfriend of four years that she didn’t have alopecia – she pulled her hair out herself.
“He didn’t understand, but he was really supportive. He encouraged me to shave my head, that way I wouldn’t be able to pull. And I did, for a whole year,” she explains. “I didn’t feel like me though, I craved having hair.”
In April this year Ruth went for another consultation, and took out a large loan to pay for treatment.
“It’s a lot of money on my salary but it seemed worth it. I had to have an inch of hair for the system to be fitted so I had to try really hard not to pull as I let my hair grow,” she says.
In July, she went to the Lucinda Ellery Studio in west London to have the system fitted.
“Even on the way there I was panicking there wasn’t enough hair, that they wouldn’t be able to do it. I had still been pulling a bit and there was about a centimetre rather than an inch,” she says.
“I was so happy when they said it was possible. Although having it fitted was very painful. But having a full head of hair felt great, I felt like a different person.
“The urge to pull hasn’t gone of course, I’m still tempted. Having hair again isn’t going to cure TTM by itself, but it helps to meet other girls at the studio going through the same thing. There’s a Facebook forum where we talk, share tips and help each other when we’re struggling.”
Every six months the system will have to be taken off, and put back on tighter. Only time will tell if Ruth has done any permanent damage, and whether when her real hair does grow back, she will be able to fight any urge to pull. But, for now, she seems like the confident young woman she should be.