TESTIMONIALS. Living with eczema: “the way people look causes shame and isolation”

Eczema causes red, itchy patches, sometimes all over the body. (©Ольга Тернавская / AdobeStock)

Plaques, redness, itching… These symptoms are the mark of eczema, a chronic inflammatory disease that affects 2.5 million French people of all ages, with physical but also psychological consequences.

This is why the French Eczema Association organizes a national information and prevention daythis Saturday, June 4, 2022.

A feeling of isolation

It is often not known how much eczema affects the daily lives of those who have it. “The disease is present in each of our choices” according to Théo, a 23-year-old student who discovered, three years ago, that he suffered from this atopic dermatitis.

Since then, red patches appear regularly on the face, neck and upper body. “It’s very visible and complicated to live with because, in addition to the incessant itching, there is the gaze of others that we perceive in the street or the tram. This look causes a feeling of isolation and sometimes shame, which maintains physical but also social malaise. Sometimes he even prefers to give up certain pleasures.

I’ve already refused to go out because I didn’t want to be stared at that would have reminded me of my sick condition.

Theo

Likewise, any bathing is not recommended : “I have already refused to spend an afternoon at the edge of a lake because I knew that if we bathed, I was going to have reactions. Just as you should not shower every day because the hot water is caustic. And chlorinated pool water is even worse! »

He also knows that any physical exertion could cause sweating and consequently aggravate his plaques. “I used to run a few years ago and I had to stop because I had extreme itching all over my body. »

But for a year a new treatment allows him to run again. “I clearly saw improvements in redness, itching and seizure spacing. I also spend much better nights and I am less afraid of appearing in public”.

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“I hid my whole body”

Corinne does not suffer from insomnia. But eczema has affected her daily life for more than twenty years. ” There are a daily routine to follow. For example, I have to take my shower in the evening because I have to put on quite greasy moisturizing creams afterwards. And I can’t wear just any clothes because I can only stand cotton and viscose, otherwise it scratches me. »

It is for this reason that Corinne hardly lived wearing a mask, only supporting cloth masks. Any rubbing on his skin can lead to itching.

We are always in control to avoid scratching in public, it’s complicated to manage to relax.

Corinne

At 53, she now admits to allowing herself short clothes: “Before, I wore long skirts to hide my legs. But now, I don’t care about people’s eyes, I consider that they must accept me as I am”. But she had to shorten her hair to avoid chafing, renounce perfume and hair removal.

Obviously, ” there are things that I missed : going to the swimming pool with my daughter, for example. And to be able to breastfeed her, I had to use less cortisone cream so I was covered in patches from head to toe! »

If she shuns the beach and its irritating sand, abstains from drinking alcohol because of treatment side effects, or imposes spa treatments every summer, she nevertheless admits that she did not suffer socially from her illness: “It was fine because I hid my whole body. And when my face was red, I was sometimes told that I had a sunburn, and I didn’t answer anything. I refused to talk about it for a long time.

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