An ugly mood that kills

Glen Saville committed suicide because he thought he was hideous. Others saw him as a good-looking young man. Stella Yarrow on the 'pure hell' of body dysmorphic disorder

GLEN SAVILLE was a good-looking young man with an attractive smile. Yet from his school days, he was tormented by a belief that he looked ugly. So convinced was he that people were laughing at him and that they hated him because of his looks, that he barely left the house he shared with his mother. One October day when Glen was 29, his mother came home to find that he had hanged himself.

Weeks before his death, Glen had explained how he felt in a note to his psychiatrist. "I feel like a total freak," he wrote. "Thoughts of being ugly invade every waking moment, gone only when asleep. Life is pure hell."

Not long after Glen's death, his mother, Chris Saville, came across a newspaper article about an illness called body dysmorphic disorder. The description seemed to fit her son's condition exactly. "I can't describe the feelings that went through me," she says. "It was about people who look in the mirror and see a monster, and how they often kill themselves." Though she had gone with her son to see various psychiatrists for over a decade, this was the first time she realised Glen had suffered from a recognised illness that could lead to suicide.

Since that discovery after her son's death in 1991, Chris has found out as much as she can about body dysmorphic disorder. She believes, rightly or wrongly, that her lack of understanding of Glen's condition contributed to his suicide. The night before his death, they quarrelled, and Glen threatened to kill himself. "You don't understand me, do you, Mum?" he asked. "No, I don't," she said, "you're a lovely looking boy." "Well, there is no hope, then," Glen ominously replied.

What Chris did not know at the time was that reassuring a sufferer is the worst thing a carer can do. Despite such bolstering, people with body dysmorphic disorder become obsessed with defects that are non-existent, or are so small as to be virtually invisible. They exaggerate their minor flaws, especially the nose, eyes, facial spots and wrinkles. Glen Saville believed he looked like a monkey. He used to dash his head against a wall, to knock what he saw as his "prominent eyebrows" down to normal size.

It is difficult to say how common body dysmorphic disorder is, or why people develop it. American psychiatrist Katharine A Phillips has called it a "secret disorder", because many sufferers are so embarrassed that they keep their symptoms to themselves. Others may never get to see a psychiatrist, seeking help instead from plastic surgeons or skin specialists.

People with the condition constantly check what they look like in the mirror and compare themselves to others - habits which many "normal" people may recognise in themselves. Yet there is a big difference between casting surreptitious glances at other people's cellulite-free thighs in the changing room, and body dysmorphic disorder, which can be seriously disabling.

Twenty-four-year-old Anne Turner (not her real name) dropped out of an interior design course because of her illness. She has spent much of the last five years at home, obsessively washing and blow-drying her hair, bathing, and carrying out beauty treatments. At her worst stage, she used a facial steamer to repeatedly peel layers of skin from her face until it was raw. She was spending pounds 400-pounds 500 a month on cosmetics, beauty treatments and her hair. "I'm so disgusted with how I look," she says. "Nobody can imagine how awful it feels unless they feel it themselves. It's just like hell on earth."

Like Chris Saville, Anne Turner only found out that body dysmorphic disorder was a recognised illness when she read about it in the press. She had been treated by numerous psychologists and psychiatrists who had apparently failed to spot it. Because she had an obsession with being fat as well as ugly, her doctor sent her to an eating disorder specialist, to be treated for what was thought to be either bulimia or anorexia. "But I always knew it was deeper than that," Anne explains. "I knew there was something different from anorexia, but I never knew what." In fact, though sufferers of both illnesses are preoccupied with their looks, psychiatrists regard the two conditions as quite separate.

Babs Penalver, another sufferer, only found out what her illness was 18 months ago, from a magazine article, after suffering from body dysmorphic disorder for 20 years. Now aged 50, she had always thought her feelings of looking like a freak were caused by depression, for which she had been treated with electroconvulsive therapy (ECT) and tranquillisers such as Valium.

Why is it that so many sufferers are left in ignorance for so long? One reason is the reluctance or inability of doctors to give a diagnosis. This is mainly to do with the fact that they see so few cases, says Dr David Veale, consultant psychiatrist at Grovelands Priory Hospital in north London, who has treated many sufferers. Very little has been published about the disease, and few patients declare their symptoms.

According to Dr Veale, body dysmorphic disorder is notoriously difficult to treat. Patients frequently have other psychological problems, such as depression and obsessive-compulsive behaviour. Some improve, however, when treated with anti-depressants such as Prozac.

Another form of treatment is cognitive behaviour therapy. In this, patients are encouraged to cut down on typical behaviour such as checking in mirrors, and are encouraged to do things they have been avoiding - such as going out and meeting people. They are also helped to think more rationally about their looks.

One method, developed at the Maudsley Hospital in London, is to put on trial the idea that the sufferer is ugly. The therapist, acting as a kind of counsel for the prosecution, starts with an over-the-top accusation - saying, for example, that the patient's nose is so big that they can't get through the door. The patient is forced to admit that this is not true. The therapist then moves on to less extreme accusations.

"What the person normally does is look for evidence to confirm his or her belief," says Brendan McLoughlin, nurse behaviour therapist at the Maudsley. "Now, what they have to do is find evidence to deny it. The approach has been very successful so far."

The first clinical trial of treatment for body dysmorphic disorder, led by Dr David Veale and as yet unpublished, has shown encouraging results for cognitive behaviour therapy. Two-thirds of the group that received treatment improved in the short term, compared to a group that received none.

Cognitive behaviour therapy is no quick fix, however. Babs Penalver, for example, found it too hard to cope with and discharged herself from hospital. But Anne Turner found she did improve; she has stopped her obsessive facials, though the more rational beliefs she developed while being treated by Dr Veale in hospital have tended to slip away. It takes a very long time to reverse habits which have built up over years, even decades, says Dr Veale.

As for Glen Saville, the doctors who treated him at Cane Hill Hospital in Surrey gave him drugs which are known as neuroleptics. These are usually used to treat psychotic patients such as schizophrenics, who have delusions. Such people are not only completely convinced of their beliefs, but have no recognition at all that they have a mental illness.

According to Dr Veale, doctors in the past tended to treat body dysmorphic disorder with neuroleptics because they thought the patient's belief that he or she was ugly was also a delusion. In most cases, though, sufferers have what is called an "over-valued idea" - still very fixed, but stronger at some times than at others. They differ from psychotic patients in that there is a chink in the armour of their belief.

The Ravensbourne NHS Trust, of which Cane Hill Hospital is now a part, maintains that Glen did have delusions. Its medical director, Dr David Wood, says that if he had regularly taken his neuroleptics, he might have improved enough to be given psychological treatment. Chris Saville argues that the drugs had side-effects: they made Glen restless, and had him constantly pacing up and down. He would wake up terrified in the mornings, she says, often in tears. On occasions the drugs also gave him spasms. She firmly believes neuroleptics made her son more depressed, and that they may even have contributed to his suicide.

While there is no way this can be proved, the question remains of whether the drugs positively helped Glen. There are no published clinical trials to assess whether neuroleptics, or any other form of treatment, are effective for body dysmorphic disorder. More research is needed, says Dr Veale, because "doctors are completely in the dark about how to treat it". He plans to follow up his own research into the condition with a trial using Prozac.

Despite the obstacles she has encountered, Chris Saville is determined to make others more aware of this disease - and of the need to involve carers in treatment. She plans to set up a self-help organisation for sufferers and their relatives. "Self-help was the thing Glen really needed," she says, "a chance to talk to other people with the same problem. If I could do this, I'd feel he hadn't died in vain." !