Pauline Lopez, 35, hesitated to testify under her real name. But she finally dared to tell us about her life as a couple, with and despite her eczema. A chronic pathology of the skin which manifests itself by outbreaks of red patches which itch, can ooze, burn and become superinfected.
On the occasion of the Saturday of the 8th national eczema day*, which offers workshops, meetings, treasure hunts online and in seven cities in France, Pauline has agreed to talk about an intimate subject. “I said to myself that it was important to talk about love life, that people can identify with it. You should 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, called atopic dermatitis by connoisseurs, entered Pauline’s life at the end of adolescence. With a first crisis from 17 to 19 years old, it was not easy to seduce or even be accepted by friends… early morning drugs?” 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, even if many are still unaware of it.
This can hinder romantic encounters. To have self-confidence, to seduce, to expose oneself when one suffers from a flare-up of eczema is therefore a major challenge. “I have nomadic plates,” continues the thirty-year-old with a singsong accent. There are places that are repeated: around the eyes, which is physically disabling. 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. But for several years, she remembered the good memories of the couple. Who learned to deal with. “I remember crying and saying to him, ‘Lucky I’m not single!'”
The disease affects sex life
For Pauline, pathology sometimes takes a break, especially during her first pregnancy. But after childbirth, all the months of August look like a descent into hell “between the heat, the sweat, the clothes that we can’t stand, the chlorine from the swimming pool, the wet swimsuit, she lists . It’s atrocious, I have an eczema shirt! Too bad, it’s the holidays, so time for us…”
The disease does not spare the genitals, thwarting sexual life. According to a study published in February 2022* by theFrench Eczema Association, one in four patients recognizes a decrease in libido because of this disease. Their spouses are 42% to admit that it decreases their own desire. “Unsurprisingly, the patient whose skin is irritated, inflamed, is afraid of being in pain”, sums up Ziad Reguiai, dermatologist at the Courlancy polyclinic in Reims. And the partner that the part of the legs in the air does not turn into grimaces…
“As soon as he touches me, I scratch”
When Pauline and Christophe embarked on the project of having a second child, she had to stop the treatment that relieved her. Plates then appeared on the breasts, her pubis, on the inside of her thighs. “We couldn’t have sex every time we wanted to,” she admits. These are erogenous zones. Because of eczema, we don’t get wet. As soon as he touches me, I scratch. I already had the bra that stuck so much it oozed. I would have preferred to have my legs full. But we don’t choose…”
Another problem, “We wondered if it was a mycosis or eczema? “With a difference in size: eczema, it has been said, is not contagious, but mycosis yes. “A patient followed for atopic dermatitis had spoken to her general practitioner, a woman, about her gynecological problems, illustrates the dermatologist. She was treated for a yeast infection. It didn’t change anything. From the moment his GP sent me a letter, I understood that it was something else. However, mycosis is extremely common and the symptoms are similar to eczema. That’s why we have to talk about it. »
“It is not a dimension spontaneously approached by the patient”
But for many, the subject of intimate life impacted by eczema remains taboo. “As always in dermatological problems, the quality of life suffers. But it is not a dimension spontaneously approached by the patient, out of modesty, recognizes Ziad Reguiai. They talk more easily about the itching that rots their daily lives. Moreover, 2 out of 3 patients scratch at least 12 hours a day. To avoid the subject is to risk missing out on essential information. “Atopic dermatitis requires comprehensive care and sex life is part of it,” 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 concealed and the severity lessened. “Especially since there are effective treatments: creams, tablets, injections…
If for a few months, the injections of Dupixent relieved Pauline a lot, she is better today without the need for injections. But compromises are still relevant… “I knock on wood!, she rejoices. What’s new is that I have some on my hands. I am 35 years old and have 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 no more. Now that he knows it, he presses harder, like giving me a massage. We have to find alternatives. It’s been fifteen years, so it’s worked out! »
* The French Eczema Association offers to register on associationeczema.fr.
** The AFI (Atopy Family Impact) survey was carried out by online questionnaires from January to April 2021, among 2,530 patients aged 18 and over, suffering from atopic eczema, including 1,266 patients declaring themselves as a couple and whose spouse agreed to answer the questionnaire.