Pauline López, 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. Chronic pathology of the skin that is manifested by outbreaks of red spots that itch, can suppurate, burn and become superinfected.
On the occasion of the 8th National Eczema Day* on Saturday, which offers workshops, meetings, treasure hunts online and in seven cities in France, Pauline has agreed to talk about an intimate topic. “I told 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 woman who lives near Perpignan, with tears in her voice.
“With swollen eyelids, I look like Quasimodo! »
This disease, called atopic dermatitis by insiders, invited itself into Pauline’s life in her late teens. With a first crisis from 17 to 19 years old, it was not easy to seduce or even be accepted by friends…morning drugs?” Many of my friends were afraid to touch me. » Unpleasant when they are your friends. And problematic when it is your life partner, especially since this skin disease is not contagious, although many still do not know it.
This can make romantic encounters difficult. Having self-confidence, seducing, exposing yourself when you have an eczema outbreak is therefore a great challenge. “I have nomadic dishes,” continues the thirtysomething with a singing accent. There are places that recur: around the eyes, which is physically disabling. With swollen eyelids I look like Quasimodo! Which did not prevent Pauline from finding love. She has lived with Christophe for fifteen years and now has two children. At the time of their encounter, the disease was latent. But for several years she remembered the good memories of the couple. With whom he learned to deal. “I remember crying and saying, ‘Lucky I’m not single!'”
The disease affects sexual life.
For Pauline, pathology sometimes takes a break, especially during her first pregnancy. But after giving birth, every month of August seems like a descent into hell “between the heat, the sweat, the clothes we can’t stand, the chlorine in the pool, the wet swimsuit, she enumerates. It’s atrocious, I have an eczema t-shirt! Too bad, it’s the holidays, so time for us…”
The disease does not spare the genitals, frustrating sexual life. According to a study published in February 2022* by the French Eczema Association, one in four patients recognizes a decrease in libido due to this disease. Their spouses are 42% to admit that it lowers their own desire. “As expected, the patient whose skin is irritated, inflamed, is afraid of hurting himself,” summarizes 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 faces…
“As soon as it 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. Then plaques appeared on the breasts, on the pubis, on the inside of the thighs. “We couldn’t have sex whenever we wanted,” she admits. These are erogenous zones. Due to eczema, we did not get wet. As soon as she touches me, I scratch myself. She already had the bra that was sticking so much that she was oozing. She would have preferred to have full legs. But we don’t choose…”
Another problem: “We were wondering if it was a yeast infection or eczema. “With a difference in size: eczema, it has been said, is not contagious, but mycosis is. “A patient followed by atopic dermatitis had spoken with her family doctor, a woman, about her gynecological problems, illustrates the dermatologist. She was treated for a yeast infection. She didn’t change a thing. From the moment her 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 addressed spontaneously by the patient”
But for many, the subject of intimate life affected by eczema remains a taboo. “As always in dermatological problems, quality of life suffers. But it is not a dimension addressed spontaneously by the patient, out of modesty, admits Ziad Reguiai. They speak more easily of the itch that rots their daily lives. Furthermore, 2 out of 3 patients scratch at least 12 hours a day. To avoid the topic is to risk missing essential information. “Atopic dermatitis requires comprehensive care and sexual 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 hidden and the severity is reduced. “Especially because there are effective treatments: creams, pills, injections…
If for a few months Dupixent injections relieved Pauline a lot, today she is better without the need for injections. But the commitments are still relevant… “Knock on wood!” he rejoices. The new thing is that I have some in my hands. I am 35 years old and I 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 am in crisis. The caresses are gone. Now that he knows, he presses harder, like he’s giving me a massage. We have to find alternatives. It’s been fifteen years, so it worked! »
* The French Eczema Association offers to register on associationeczema.fr.
** The AFI (Atopia Family Impact) survey was conducted through online questionnaires from January to April 2021, among 2,530 patients aged 18 and over, suffering from atopic eczema, including 1,266 patients who reported being in a relationship and whose spouse agreed to answer the questionnaire.
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