One day, in the shower, Celia's hair began to fall out in chunks. Within two weeks, she was completely bald. There was no pain, but the psychological suffering was terrible. People didn't understand, and tended to treat it as a purely cosmetic problem. "It happened eight years ago. I shut myself in the house, unable to do anything. I've been taking tranquilisers and seeing a therapist ever since," she says.
Celia suffers from alopecia areata, an autoimmune illness which results in hair loss including, in the most serious cases, eyebrows, eyelashes and pubic hair. Although it is neither painful nor contagious, it has a serious emotional effect and reduces quality of life.
Men who suffer from it tend to get over it without too many problems, but many women find it very hard to cope. They see it as a stigma because people stare at them and, when it happens at a very early age, they can end up being bullied at school. That's what happened to Laura.
"One day some of my classmates followed me all the way from my house to school, laughing about my wig. They often used to try to pull it off in the playground at break times," she says.
Laura first started to lose her hair when she was 12. It grew back two years later. Like most patients, it occurs again from time to time for no apparent reason, and she is desperate for effective medication to be developed. The drugs available at the moment may sometimes stop the hair loss and make it grow again, but they are not curative and can have unpleasant side effects.
The second Laura in this group started to suffer from alopecia when she was just six years old, which did not bode well for the future . "I was a perfectly normal child and experienced no traumas when I was young. When my hair started to fall out, there was no apparent cause," she says.
"With this type of alopecia hair transplants are not possible because the hair will just fall out again. The immune system would attack the roots and cause another inflammation of the hair follicle," says Sergio Vañó, dermatologist and the director of the Trichology Unit of the Ramón y Cajal hospital in Madrid.
"There is no justification for taking cortisone for 15 years, because it is a treatment that can cause side effects. Looking ahead to the future, research is being carried out into drugs that are safer and would mean that the patient kept their hair all the time by having five injections a year," says Dr Vañó.
Insomnia and low self-esteem
The women we interviewed for this article get together once a month at the Ramón y Cajal hospital to share their experiences and provide mutual support, with Patricia Fernández, a clinical psychologist from the hospital's Psychiatry department. They are trying to overcome a problem which affects them a great deal. This isn't surprising: hair plays a crucial role in people's identity and image, so losing it damages self-esteem and, especially in women, can lead to depression and anxiety.
"From a psychological point of view it is very hard. As well as it being unpleasant, you live in uncertainty. You don't know what to do, you see so many doctors, have different tests, try all the treatments, read everything that has been published about the subject," explains Lucía. "I'm fine at the moment, but not having hair can cause numerous problems, including urinary infections, respiratory alterations, dry eyes... your hair protects you," she says.
The others agree, and talk about the inconveniences caused by hair loss. Hair regulates body temperature, retains perspiration and poses a barrier to pathogens. "I didn't need spectacles but I used to wear some with plain glass lenses to protect my eyes from the dust," says Celia. Often, when a woman goes out without her wig or a scarf to cover her head, people think she must have cancer and misunderstandings can arise.
One day, Fiorella decided to shave her head completely and face up to the prejudices. When someone asks her if she is a cancer patient, she responds assertively. "I say: 'No, and I'm fantastic.' I decided not to wear a wig because that's how I am. If in 20 years my daughters' hair falls out, I want them to see it as something normal. I don't want what happened to me to happen to them, so they are too scared to go outside. It's a small rebellion on my part," she says.
Marta, who first started to lose her hair when she was six, has been having treatment for the past seven years and doesn't hide the fact that the illness is very restricting. "The thing is, there isn't a positive aspect to it. Yes, I know we have work and somewhere to eat and sleep and hot water for our showers. Can you live without hair? Yes, you can. Can you live without legs? Yes, that too. But someone without legs may well be happier than me with no hair. I have gone out without my wig as well, completely bald, but it is awful, because in the end you don't believe you can be good company; you're not happy about yourself and that means you're not happy with anybody. I'm the only one earning in my household, so I can't afford to be depressed and stay indoors staring at four walls all day long," says Marta.
So far 22 women have taken part in group therapy at the Ramón y Cajal hospital. According to Patricia Fernández, six out of every ten suffer from insomnia. As well as low self-esteem, a third of patients show signs of obsessive ideas. They tend to be afraid of being judged and, on occasion, of not finding work.
"Many have left their job because they were afraid of having to give explanations and those who weren't working are afraid to go for interviews because they feel vulnerable. About 38 per cent have a history of mental disorders in their families," says Patricia. Some have begun to develop an obsessive personality. When they get up in the morning, it is not unusual for them to count the hairs on the pillow that they have lost during the night.
Laura says men seem to understand how she feels better than other women. Her female friends tend to ignore the problem, maybe to make her feel better, but the men are more aware of the trauma she must be suffering through hair loss.
"They understand that when you lose your hair, you lose femininity," she says. In this situation, loving and sexual relations can be delicate. When Laura met somebody new, she would explain the problem on the second date. "I didn't want them to end up with my wig in their hands in bed," she says, laughing. "They reacted well when I told them. When I met my husband, he didn't care. Sometimes, though, it was ironic. I have had men who bullied me at school try to pick me up in bars years later, because when they saw me at times when I had hair, they didn't recognise me".
Nobody really knows what causes alopecia areata, although sometimes stress can trigger it. Some tests have shown that there can be a genetic influence. Dr Vañó says it is impossible to predict how it will evolve, and the treatments that are effective take several months to work.
Fiorella has had several relapses and can't rule out stress as the cause. "Last year, I don't know if it was because my daughter nearly died, all my hair fell out in one day," she says. When Laura's brother was killed in a traffic accident, however, she didn't lose any hair at all.
Patients with alopecia areata are looking forward to the new drugs which should be available within the next three years. There is a great deal of hope surrounding the use of JAK inhibitors, a treatment which has proven effective in hair stimulation, although it is still in the research phase.
This is the second most common type of alopecia after androgenic, which is a hormonal problem. "The aim of the group therapy is to develop resilience and learn to adapt. A high percentage of women feel alone because they don't talk about it. They realise when they come for group therapy that others are going through the same thing," says Patricia.
In the most extreme cases there are suicide attempts. If vulnerability caused by a mental disorder is combined with poor stress management and certain pathological aspects of their personality, the patients can feel overwhelmed and try to take their own lives. "Our socialisation is related to presenting a good image to the world," Patricia explains.