Pauline Lopez, 35, was reluctant to testify under her real name. But she finally dared to tell us about her married life, with and despite her eczema. A chronic skin condition that is manifested by red plaque itching that can ooze, burn, burn and become overinfected.
On the occasion of the 8th National Eczema Day * on Saturday, which offers workshops, meetings, track games online and in seven cities in France, Pauline agreed to talk about an intimate topic. “I thought it was important to talk about love life so that people could identify with each other.” We must not be ashamed of this disease, ”insists the 30-year-old who lives near Perpignan, tears in her voice.
“With swollen eyelids, I look like Quasimodo!” »
This disease, known by atopic dermatitis connoisseurs, was invited into Pauline’s life in her late teens. With a first crisis of 17 to 19 years, not obvious to seduce or even be accepted by his friends… “Since I had a lot of eczema around my eyes, I heard myself say in high school” Are you fucked? drugs in the morning? ” Many of my friends were afraid to touch me. Unpleasant when they are your friends. And problematic when it’s your life partner. Especially since this skin disease is not contagious, although many still do not know it.
This can slow down dating. So having confidence in yourself, seducing yourself, getting naked when you suffer from a bout of eczema is a big challenge. “I have nomadic plaques,” said the 30-year-old with a singing accent. There are places that repeat themselves: around the eyes, which is physically handicapping. With swollen eyelids, I look like Quasimodo! Which didn’t stop Pauline from finding love. She has lived with Christophe for fifteen years and now has two children. At the time of their meeting, the disease was dormant. For many years, she has been remembered as a good souvenir of the couple. Who learned to deal with. “I remember crying, ‘I’m glad I’m not single!'”
The disease impacts sex life
For Pauline, the pathology sometimes pauses, especially during her first pregnancy. But after childbirth, every month of August looks like a hellish descent “between the heat, the sweat, the unbearable clothes, the chlorine in the pool, the wet jersey,” she says. . It’s atrocious, I have an eczema jersey! Too bad it’s the holidays, so it’s time for us … “
The disease does not spare the genitals, thwarting sex life. According to a study published in February 2022 * by the French Eczema Association, one in four patients report a decrease in libido due to this disease. Their spouses are 42% who admit that it diminishes their own desire. “Unsurprisingly, the patient whose skin is irritated, inflamed, is afraid of getting hurt,” said Ziad Reguiai, a dermatologist at the Courlancy Polyclinic in Reims. And the partner who takes care of the part of the legs in the naked air turns into grimaces …
“As soon as he touches me, I scratch”
When Pauline and Christophe embarked on a project to have a second child, she had to stop the treatment that relieved her. Plaques then appeared on her breasts, her pubis, inside her thighs. “We couldn’t have sex every time we wanted to,” she said. These are erogenous zones. Because of the eczema, you don’t get wet. As soon as he touches me, I scratch. I’ve had the bra sticking so tight before. I would have preferred to have my legs full. But we don’t choose “
Another problem, “Wondering if it was a fungus or eczema?” With a difference in size: eczema, it has been said, is not contagious, but mycosis is. “A woman who was being treated for atopic dermatitis had told her general practitioner, a woman, about her gynecological problems,” says the dermatologist. She was treated for fungal infections. It hasn’t changed anything. From the moment his GP sent me a letter, I realized it was something else. Or, mycosis is extremely common and the symptoms close to eczema. That’s why we need to talk about it. »
“What is not a spontaneous dimension approached by the patient”
But for many, the subject of intimate life struck by eczema remains taboo. “As always in dermatological problems, the quality of life in bed. But what is not a spontaneous dimension approached by the patient, through modesty, recognizes Ziad Reguiai. They talk more easily about the itching that rots their daily lives. In fact, 2 out of 3 patients scratch at least 12 hours a day. Avoiding the subject risks missing out on essential information. “Atopic dermatitis requires a reward in global pregnancy and sex life in fact, insists the doctor. The genital areas are hidden, if the patient does not mention it, the doctor will rarely talk about it. Part of the impact is hidden and severity is diminished. Especially since there are effective treatments: cream, tablets, injections …
If for a few months Dupixent’s bites relieved Pauline a lot, she’s better off today without the need for injections. But compromises are still relevant… “I touch wood!” She rejoices. What’s new is that I have some on my hands. I am 35 years old and the same hands as my 87 year old grandmother! »
And beyond the sexual act, receiving simple caresses is also complicated. “The hug becomes guili when I’m in crisis. The caresses are gone. Now that he knows, he’s pushing harder, like massaging me. We have to find alternatives. It’s been fifteen years, so it’s grounded! »
* The French Eczema Association offers to register on associationeczema.fr.
** The AFI (Atopy Family Impact) survey was conducted through online questionnaires from January to April 2021, with 2,530 patients aged 18 and over with atopic eczema, including 1,266 patients reporting couples and whose questionnaire the spouse agreed to.