Beautiful women who tear out their hair

It’s a little-understood affliction that drives sufferers to a life of misery, secrecy and shame. Most are good-looking, intelligent young women. Jemima Khan tries to tease out the truth about trichotillomania

Robina started pulling out her hair when she was 11; she can remember the exact day she started, on a Sunday afternoon sitting in the armchair in the living room at home. By the age of 12 she was bald. Her father took her to the doctor and told him: “She plucks her head like a chicken.” The doctor could provide no explanation. For the next 27 years she spent her time “wearing hats and hiding”. Her boyfriend of over a decade is unaware that her baldness is self-inflicted, one hair at a time.

Robina has trichotillomania, a little-known and less understood disease. It is characterised by an uncontrollable urge to pluck out the hair, usually from the scalp but also sometimes the eyebrows, eyelashes, body hair or pubic hair, often to the point of baldness. It is thought to affect as many as one million women in Britain today, or, according to other estimates, between 2 and 4% of the general population.

The figures are on a par with those for much more widely known conditions, such as anorexia, panic attacks and bulimia. But most people have never heard of trichotillomania. Neither have most GPs in this country, even though it’s estima-ted that every GP is likely to have at least 10 trichotillomania patients in a typical list of 1,000. Nor will most teachers have heard of it, despite the fact that 100% of them will at some point have a child with the condition in their classroom.

Lucinda Ellery is the UK’s leading expert on trichotillomania. The ultimate Carry On fantasy — all boobs, crimson pout, blonde bouffant (“totally false”) and bling (“mostly gifts from my trich girls”), she set up the first clinic in the UK to specialise in female hair loss. Ellery has famous clients. Her best friend, Barbara Windsor, is having her hair primped in the salon. Kylie, Girls Aloud, Liberty X and the Sugababes have all visited for hair extensions. But most of her clients suffer from some kind of baldness as a result of chemotherapy, surgery, wounds or female-pattern hair loss. And then there are Ellery’s “trich girls”. “We have more trichos under one roof than anywhere else in the world,” she says cheerfully.

Few understand the agony of hair loss better than Ellery. When she was nine, her father died suddenly and she was deposited in a convent in South Wales. Her thick blonde hair fell out almost overnight. After that her head was shaved. She bought her first wig when she was 15. “From then on, I spent all my money on wigs — I wore them 24 hours a day, and I don’t think I got a decent night’s sleep for 20 years.”

Detecting a gap in the market, she devised the indestructible “volumiser”, which has now been replicated in other salons. A fine mesh cap is fixed across the damaged areas of the scalp, through which the remaining hair is pulled and extensions attached. It is virtually impossible to get at the new hair growing underneath. “It’s a bit like wiring the jaws for overeating,” says Ellery. It’s extreme and it takes a whole day to apply, but it works, especially if combined with regular counselling and support groups. Once a volumiser is in place, you can swim, shower and sleep in it.

Ellery whips one out from under her desk and invites me to yank on the blonde tresses attached to it. We tussle as if it were a Christmas cracker. The hair doesn’t budge. “I once lost my wig in M&S. It got caught on a woman’s watch on the escalator. It floored me. I couldn’t go back to that shop for seven years.” She was determined others would not have to suffer the same humiliation.

Her clinic is in a discreet town house on Chiswick High Street, west London. A bright reception leads into a cavernous back room which is full and surprisingly festive. There’s a palm tree, MTV is playing on a screen on the end wall, and food and drinks are served from the bar. “Technicians” in lilac shirts and pink gowns and gloves work in pairs on women with varying degrees of hair loss. Some of the women are shielded behind lattice screens. Others are happy to chat. For many, the salon visit provides temporary respite from a life of constant secrecy and subterfuge.

Ellery sweeps through the salon, quipping and hugging and greeting everyone by name. She ushers me to the furthest corner, where Robina, 39, a customer-care manager and mother of four, is having her volumiser adjusted. You’d never guess that beneath the shiny brown hair she looks, she says, “like a monk — totally bald on top, long at the sides”. She’s exceptionally pretty, but when I ask if she’s ever been a model she looks aghast. “That’s not what I see when I look in the mirror.”

After 27 years of pulling out her hair she read about Lucinda’s clinic, and after six months she summoned the courage to make an appointment. Her new head of hair changed her life instantly. “My brother, who was waiting in the reception, didn’t recognise me. On the way home a man held a door open for me for the first time in my life.” She believes her hair-pulling was induced by the stress of her father’s volatility and violence. “I would lock myself away in the bathroom and pull my hair out until the early hours of the morning. If that’s not a child in trauma, I don’t know what is.”

Trichotillomania is not a new disease, but there is still great uncertainty as to what causes it. First described over 100 years ago, the syndrome was given its name — derived from the Greek words thrix (hair), tillein (to pluck) and mania (frenzy) — by a French dermatologist who noticed the compulsion in many of his patients. Ellery prefers the “less offensive” terms “tricho” and TTM, which don’t imply madness. She says 99% of the women she sees have no other pre-existing psychological or body-related issues. Research carried out by the Trichotillomania Learning Center in California in 2000 found that sufferers were “as psychologically healthy as the rest of the population”.

The condition affects people from all backgrounds. Ellery shows me images of women on her computer screen. There’s an MP, a doctor, a judge, a barrister, a journalist, a policewoman, a model, a psychotherapist, a tycoon’s wife, a hairdresser, a schoolgirl, a housewife, faces obscured, heads bowed in what looks like shame. All are almost entirely bald.

Trichotillomania almost always starts at puberty and predominantly affects women. Classified as an impulse control disorder, it is thought to be triggered by anxiety. Some studies suggest a genetic link, others that it’s a neurobiological disorder. On MRI scans it looks similar to Tourette syndrome, which is usually a motor disorder. Others claim it’s an atavistic grooming instinct gone wrong.

Manjit Ubhi, a glamorous psychotherapist from Birmingham, suffered for 25 years before being treated successfully and now counsels other sufferers. She is convinced there is a link with trauma, in particular bereavement. Pulling, cutting or shaving hair, she notes, was an ancient act of grief and mourning. She started pulling out her hair when she was 10, shortly after her mother died.

Anna, a 19-year-old complementary therapist from Burton-upon-Trent, says that within months of her grandmother dying she had pulled out huge chunks of hair all over her head.

Others, like “A”, 32, an Oxford graduate and editor, insist they had a privileged, problem-free childhood. “A” believes her pulling is linked to her obsession with order. “I like symmetry. If the hairs are out of order or not uniform, I’ll remove them. I used to line my eyelashes up in the sink.”

None of the women I spoke to had ever self- harmed in any other way. Ellery’s view is that it’s “more self-calm than self-harm”. Many women say that they pull in a trance-like state. Catherine Walsh, a successful barrister in her late thirties, has described how “the activity is so absorbing that everything else going on in my life just fades away — but of course any relief is short-lived because of all the damage you’re doing”.

The act of pulling is usually highly ritualised. Women describe searching for the “right hair”, and usually something is done with the hair afterwards — it may be chewed, wrapped round the tongue, pulled through the teeth, bitten into pieces or even ingested. Fewer than a quarter of the people who pull their hair discard it quickly. “For me, it’s usually the kinky hairs on my head which are slightly thicker or a different texture to the rest,” says “A”. “Those absolutely must go. Or if my head is sore in places, I’ll pull around the sensitive areas. I know it sounds perverse, but the more painful it is, the more gratification I get.”

The pain and pleasure of pulling may also be associated with sexual pleasure, according to Philip Kingsley, the UK’s leading trichologist. The typical pattern is: rising tension, a quick high from a release of endorphins accompanied by pleasure, gratification or relief — and then shame.

Secrecy and shame are an intrinsic part of the sufferer’s life. Robina has only spoken to the clinic and blood relations about her condition, but agreed to talk to me because she hopes it will encourage others to find help. An article about trichotillomania changed her life after 30 years of suffering. “I didn’t even know help was available,” she says. “Life’s too short to be unhappy for so long.” She blames the breakdown of her marriage on the constant need for secrecy and the mood swings resulting from her varying degrees of baldness. She still tells people her hair loss is alopecia (ie, not self-inflicted).

Her attitude is not unusual. Dr Sarah Brewer, who co-wrote The Quantum Follicle: The Sexuality and Psychology of Hair, explains: “Part of the reason that it is so under-reported is simply because so few people with the condition talk about it. Even when they do reach out, many will present their symptoms as alopecia.”

One of Manjit’s clients could admit that she had been raped and had problems with alcohol but not that she pulled out her hair. Dr John Gray, a GP and member of the Oxford Hair Foundation who runs a trichology clinic in Surrey, says: “I have a strong feeling that those we know about may be the tip of the iceberg. The real number could be far in excess of the official figures.”

Ellery has come across several women who have hidden their baldness from partners for decades.

Yvonne Lynam, 31, from County Laois in Ireland, says: “In the 10 years I was with the father of my children, he never knew. I was always up before him and either had my hair done or wore a towel on my head. I’d have to backcomb it, put it up and keep it all together with a hair band. I’d fill in the bald patches on the back and sides with mascara. It looked dreadful and made me feel so self-conscious and ashamed.”

Robina now has a new boyfriend with whom she has two more children. Is he aware that she pulls out her hair? “God, no.” She looks horrified. “I’ve had three major relationships in my life and none of them have ever known.” Then she smiles: “I’m an expert at hiding it.”

Then there are those who find it simpler to avoid getting into relationships at all. “A” started pulling out her eyelashes at the age of five. At 10 she started on her eyebrows, then at 14 she turned to her hair. “I’ve never heard of anyone with trich who started that young or pulled so comprehensively. I’ve got the T-shirt,” she laughs. She regularly spends three hours a night in the bathroom pulling out her hair. Before the volumiser, she wore wigs or coloured in the bald patches with make-up, which “prevented any serious relationships”.

Despite the secretarial glasses and unremarkable clothes, “A”, like Robina, is notably good-looking, with huge dark eyes, olive skin and long brown hair. Dr Gray and Lucinda Ellery agree that trichotillomania is most likely to affect women of above-average looks and intelligence. And Philip Kingsley notes: “Oddly, it is often women with naturally luxuriant hair who are more prone.”

“A” has a volumiser taped down at the front to conceal the bald patches where her fringe should be. She’s also wearing glasses and thick eyeliner to disguise the fact that in the past few days she has pulled out all her eyebrows and eyelashes. “I get very on edge if I feel anyone scrutinising my face. Sometimes I play up being odd and eccentric, just to put distance between me and other people.

“All my friendships, all the choices I’ve made, have been determined by this problem. I wanted to do drama at university, but I couldn’t have people that close to me. I was a freelance journalist for a bit, but for every article I wrote I’d lose half a head of hair. I’d love to just be able to study quietly on my own somewhere, but I’m afraid of myself. I need to be in an office around people. Reading at night on my own is ridiculously dangerous.” She would have loved to have “hung out with the crazy, arty crowd at Oxford”, but chose “sober, cautious people” as friends instead. “I can’t afford to have inquisitive people around me.”

As boyfriends, “A” is careful to choose either younger men, who are “immature, so I dictate the terms”, or “very cerebral types, who tend to be socially or emotionally less aware”. Her last, and only long-term, relationship was with someone who was “intellectually brilliant and emotionally retarded, which helped”. She hid her baldness from him during their two-year relationship. She never stayed the night with him, fearing that the make-up she applies to disguise her lack of eyebrows and lashes would rub off. As to living with a man, she laughs: “I’ve thought about it. If I were ever to get married, I’d have to pretend I’d like a Simone de Beauvoir-type arrangement — separate living. In truth, of course, I’d love to live with someone, but I can’t because I’d be found out.”

Sufferers live in daily dread of being exposed. For years Manjit avoided walking next to double-decker buses. Even today she only sits to the right of people, because, being right-handed, she has done less damage on that side. “I was so consumed by not being found out, I stopped living.”

Anna, 19, developed a horror of going upstairs. “I was bullied at school. People would look down from the top of the stairs and see my baldness and shout at me. From above I looked like a really old man. I would avoid shops with those high-level mirrors to prevent shoplifting. I never went swimming, and when it rained, I ran.”

“It’s like living a secret life,” explains Catherine Walsh, a barrister. “I always carry two mirrors so I can check the back of my hair wherever I am, and I live in dread of the wind or the wig I wear in court dislodging it all and blowing my cover.”

It’s easy to be dismissive about trichotillomania. It’s not life-threatening, except when linked to the rarer and more dangerous development known as trichophagia, when the hair is ingested. “But it’s a quality-of-life issue,” Ellery says. “Often there’s no consideration for the fact that it threatens your whole way of life. For a young girl, self-esteem is essential for emotional growth. Losing my hair ruined the first 25 years of my life. I had terrible self-esteem issues and got into inappropriate relationships.”

To understand the importance of hair, we only need look at the time and money spent on it. The UK hairdressing industry is worth about £6 billion a year. Hair is bound up with issues of femininity, sexuality, health, potency and attractiveness. The first thing we notice about a person is their face, then what frames it.

Joanna Patrick, a 44-year-old EC official, had breast cancer and lost her hair as a result of chemotherapy. She also had a mastectomy. “Losing my hair was far worse than losing my breast. Your hair is the first thing anybody notices. It’s absolutely fundamental.”

With self-inflicted baldness comes guilt and shame. As a Sikh, Manjit was brought up to believe that every hair on the body is a gift from the Divine and should never be cut or removed. “What deep alienation was I feeling,” she asks, “that I could rip from the roots the very essence of all that was God within me?” She was “completely consumed by the shame and sinfulness” of what she was doing.

As “A” says, “I can’t and don’t want to accept what I do. The taboo is the only thing that sometimes stops me from doing it. I don’t want to be in the ‘trichy club’. It’s a disgusting habit and I don’t want to be associated with it.”

She remembers the effect the condition had on her family, the number of fights her parents had over her, and “the look of disappointment, shame and disgust on their faces” when they caught her pulling her hair or spotted a new bald patch.

Robina was bullied at school, “ I was called ‘slap-head’ and ‘baldy’. People would throw paper at my head and I got into trouble for defending myself.” She became increasingly moody at home. Years later, her own children were teased about their mother’s baldness. Her 12-year-old daughter would ask her mother to drop her off at the school gate and beg her not to come in. “And if I was at home without my hat on, my five-year-old son would fetch it and ask me to put it on. Even if he came into my bed for a cuddle, he’d say “Hat, Mummy, hat”. Robina has no photographs of herself as a child after the age of 11 and none of herself as an adult with her children.

Another woman, who fought trichotillomania for 20 years before getting help, noticed to her horror that her daughter of 13 had started pulling her hair out in clumps from the back of her head. The girl was rushed to hospital with stomach pains, where she was operated on to remove a life-threatening obstruction in her abdomen that turned out to be a massive hair ball. She had been pulling out her hair then swallowing it.

Twenty years ago, the chances of diagnosing trichotillomania early were slim, and women had little chance of ever growing back their hair. Each follicle comes back on average 25-35 times and lasts for six years. If a woman pulls often and long enough, it leads to permanent baldness. Any re-growth is likely to be grey and a different texture from the rest of the hair.

Angela, 47, a full-time mother from Hatfield, Hertfordshire, has been pulling her hair out since she was 11. She tells me tearfully that she can’t bear to look in the mirror when the volumiser is adjusted. With her back to the mirror, she lifts it up to reveal the sparse grey fuzz that only partially covers her scalp.

But if the problem is caught early enough, the hair can make a full recovery. Thanks to the internet and growing awareness, Ellery now gets younger and younger girls coming to her for help.

Lauren is 17 and still at school. She has been coming to the clinic for four years. At one time she would pull out her hair for four hours a day, but now she’s rarely tempted. Her long dark hair has grown back and she is only here to have bright-pink hair extensions. She has been scouted by four different agencies and is now considering a career in modelling.

Anna is another success story. “Look, my eyelashes are back,” she squeals, fluttering them delightedly. “I broke up with my boyfriend and I didn’t pull them out.” Now 19, Anna started pulling out her hair and lashes at the age of eight. Her hair is starting to grow back for the first time. I ask if the extensions resemble her own hair before she started pulling it. She shrugs. She has no memory of her own hair.

Anna and Lauren admit to being lucky: their parents can afford to pay for their treatment. The volumiser system and counselling cost, on average, £1,700 a year. “Only a minuscule number of girls”, Lucinda says, manage to get funding from the NHS. It requires the help of a clued-up and supportive GP who can lobby the local primary care trust, which then has to get a funding panel to agree that the case is “exceptional”. Most applicants give up.

“Getting funding involved writing to my local MP,” says “A”, “and that meant outing myself when the likelihood was that they would reject it in the end anyway.”

Robina struggles to pay for the treatment but doesn’t feel able to go to her doctor about NHS funding. “It’s really difficult to get people to understand,” she tells me. “ ‘You do it, so you stop it,’ they’d say. But it’s not like I don’t want to stop.”

Ellery’s main aim is to increase awareness among both sufferers and professionals. She still often hears stories from girls who have been misdiagnosed by their GPs. One girl’s doctor recommended a reward-and-punishment system to her mother, while another admitted she “felt like walking straight under a bus” when her GP recommended she just get a job.

Manjit says: “I thought I was the only mad person doing this disgusting thing. As soon as I knew what it was, I felt I had power over it and could stop.” Her name in Sanskrit means “victory over the mind”. She has been “pull-free” for 12 years.

For others, there is no simple victory. There’s rarely a day when “A” doesn’t pull her hair. “I accept it’s a part of who I am. But I often dream I have a full head of hair and I’m normal. My worst moments are when I wake up, because I’ve had a glimpse of what it’s like to be free.”