Text: Clément Bürge

Doctor, I’m sick and I’m ashamed

Sexual dysfunction, mental illness and other health problems remain taboo. This silence could prevent patients from getting better.

The diagnosis was simple. Agnès Déom had Crohn’s disease. She was 13 when she found out. And no one could know anything about it. “I was a teenager. I didn’t want to talk about it with my friends,” she says. “I only talked about it with my parents. But since then, I’ve even stopped talking about it with them. It’s too complicated. I’d rather keep it to myself.” Crohn’s disease is an intestinal disorder that causes severe diarrhoea and affects about 8,000 people in Switzerland.

“People with the disease don’t dare talk about it. It’s very taboo,” says Bruno Raffa, chairman of the Swiss Crohn’s
and Ulcerative Colitis Association. “Suffering takes place in the toilet, a very private place. People are also afraid of ridicule and therefore tend to withdraw. Some are even scared to talk about it with their doctor.”

Now age 30, Agnès Deom has overcome the taboo. An osteopath from the canton of Vaud, she can now better manage her illness. “Everything started getting better the day I decided to stop taking care of my disease by myself,” she says. “I talk to my doctor and we decide together which treatment is best for me.”

Crohn’s disease is not the only disorder patients have trouble accepting. Mental illness and neurodegenerative diseases can be a thorny issue to discuss. According to a French survey by TNS Sofres, 47% of the population would be willing to hide their Parkinson’s disease if they developed it and 9 out of 10 would find a reason for hiding the disease. “It’s one of the biggest taboos in medicine today,” says Vincent Barras, medical historian at Lausanne University Hospital (CHUV). “These disorders affect the person as a subject. A man or woman would not be himself or herself if they have a mental illness. That’s what frightens them.”

For a long time, patients suffering from this kind of illness did not even have the right to speak. “As the patients had lost their ability to reason, it was believed that they couldn’t discuss things with the doctor as an equal,” says Julien Dubouchet, Secretary General of the organisation
Pro Mente Sana.

“When someone is known to have a mental illness, people think every aspect of their behaviour is a symptom of their disorder.” Julien Dubouchet, pro mente sana

Sexual dysfunction is another health problem that patients have difficulty discussing with their doctor. “Medical staff often have trouble talking about it because it confronts them directly with their own sexuality. That’s disturbing,” says Francesco Bianchi-Demicheli, sexology specialist at Geneva University Hospitals. “Very often, the dysfunction is often considered less important because sexuality is perceived as being a ‘luxury’ problem. But it can destroy couples and propel people into a deep depression.”

Not only do patients suffer, but the taboo can lead them to understand very little about their condition. That can have a devastating effect on the patient’s private and professional life. “When someone is known to have a mental illness, people think every aspect of their behaviour is a symptom of their disorder,” says Julien Dubouchet. “An expression of normal joy will be interpreted as a mood swing caused by the illness. This unscientific analysis of their behaviour can then be used to justify dismissing them from their job.”

In a recent study, Wulf Rossler, former director of the Department of Psychiatry at Zurich Hospital, showed that people do not trust someone suffering from a mental illness such as depression or schizophrenia. “According to our survey, only 38% of people would be willing to hire a person with that kind of disorder,” he says. “And only 14% would be willing to let them babysit their child.”

Embarrassing Bodies, patients showing it all

The sensationalist, irreverent and voyeuristic British TV
reality programme “Embarrassing Bodies” shows the most shameful illnesses. During the show, Dr Christian Jessen and his assistants reshape deformed breasts, treat people with severe digestive tract disorders or help morbidly obese patients lose weight.
The most famous case is Charlotte, now 13, whose feet were covered with warts. Her condition was a symptom of a faulty immune system. She needed a bone marrow transplant, which was performed during the show. “Embarrassing Bodies” draws millions of TV viewers and generates nearly 42% of the traffic on the Channel 4 website.

The cruel irony of this prejudice is that it can change the patient’s own perception of themselves. “After continuously hearing that depressed people are lazy and cannot keep a job, the patient ends up integrating this mindset and becomes unable to work,” Julien Dubouchet points out. “That kind of thinking is toxic.”

In some cases, the taboo can also impact where money goes into research. “For several decades, studies on sexual dysfunction have had more trouble obtaining financing than other disorders,” says Francesco Bianchi with a sigh.

How can we turn that process around? A growing number of diseases previously thought to be “shameful” have been accepted as normal. “Ten years ago, women were uncomfortable talking about breast cancer,” says Claire Allamand, co-chair of the Breast Cancer Network. “And doctors wouldn’t listen. That situation has totally changed today.” Patients suffering from the disease have since started publicly opening up about it. “Not everything is perfect. Breast cancer treatments cause
a number of sexual problems that are not yet discussed openly,” explains Claire Allamand. “But overall, things are better.”

Prevention campaigns can make a difference, such as the “How are you?” posters that Pro Mente Sana put up all over Switzerland. “They raise awareness about mental illness,” says Wulf Rossler. “But to truly break the taboo, more needs to be done.” The expert believes that the best way of fighting discrimination is contact with patients. “By spending time with those with a mental illness at work or in a fun activity, people realise that they are normal and trustworthy. Several studies have proved that this type of
interaction helps improve the image of certain diseases,” he says. “People become more tolerant from being in
contact with others.”

“Doctors would speak in Latin so that the patients wouldn’t understand them” Vincent Barras, medical historian at the CHUV, traces the origin and evolution of taboo illnesses.

When did the first taboo illnesses appear?
In the 19th century, when the moral values of high society – by definition more conservative – emerged and established a clear distinction between what was acceptable and what was not.

What were the first “shameful” diseases?
Certain kinds of sexual behaviour considered “deviant”, such as homosexuality, were rapidly deemed taboo. The upper classes believed anything sexual was impure. When doctors spoke about it, they would discuss it in Latin so that no one would understand.

What were the most taboo illnesses?
The major epidemics, such as tuberculosis, were long considered taboo. Being diagnosed with the disease was equivalent to a death sentence, hence the silence. People would use metaphors to talk about it. For example, tuberculosis was called “consumption”. In the 20th century, cancer gave rise to the same kind of behaviour.

Why is that?
Very little was known about the disease, and no one knew how to treat it. Even worse, until only recently it was believed that people got cancer because of some bad behaviour, like smoking or eating poorly. People also thought the disease could come from guilt caused by committing an immoral act.

Is cancer still a disease that is difficult to discuss?
Until 30 or 40 years ago, doctors rarely told patients the truth about the seriousness of their case. But today, the disease does not carry the same taboo. Doctors now understand that they need to inform patients, so that they can better care for themselves. Legally, it has also become more difficult to hide the truth. Although cancer in itself is no longer considered “shameful”, certain aspects of the disease remain so, such as sexual problems resulting from certain treatments.

How can these taboos be broken?
We need to talk about them. It’s a challenge getting rid of past stigma, but talking about those disturbing diseases is a good way of fighting the taboo.