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‘Itchy, horrible’: Canadians living with eczema share what it’s really like

It’s the time of year when the temperature drops and the air becomes drier, and people start feeling the tightness in their skin, slathering on moisturizers for relief.

But people who live with atopic dermatitis (AD), commonly known as eczema, can experience these symptoms year round, and often a moisturizer is not enough to bring relief.

People often think of eczema as mainly affecting the appearance of skin, but the reality is that there’s much more than meets the eye.

While some people living with eczema experience periods of flare with small areas of dry, inflamed, cracked skin, others experience patches that cover their whole body — along with an uncontrollable itch that severely impedes their quality of life. This can cause some sufferers to feel drained and depressed on top of feeling unwell from the ongoing physical discomfort or pain associated with the condition.

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Eczema Society of Canada.

READ MORE: ‘It was really bad’: How eczema affected one woman’s skin and how she coped

The itch can be incredibly difficult to control. It may start with a minor sensation, but scratching can aggravate the itch rather than soothe it, eventually resulting in further inflamed, broken and sometimes infected skin, according to the Eczema Society of Canada.

“I’ve had eczema on and off, everything from just a little bit on my hands and face and neck — of course, the visible parts — all the way to 80, 85 per cent of my body just completely covered in itchy, horrible, unexplainable rash,” says Allie, a young woman from B.C. who lives with severe eczema.

According to the Eczema Society of Canada’s 2021 survey report “Itch in Atopic Dermatitis,” 44 per cent of adults with severe AD feel itchy all the time, while 46 per cent of adults with moderate or severe AD describe their itch as debilitating. For children with moderate or severe AD, about 76 per cent are woken up from sleep due to their itch.

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Since developing eczema in childhood, Allie, who’s now an adult, has had to live her life around her symptoms — for example, suffering through an intense itch while working in customer service.

AD has also affected her social commitments, she says. “Hanging out with family and friends or even something as simple as running into the grocery store to get groceries can become a huge source of anxiety.”

But Allie says she feels grateful to her family for emotional support. Recently, her family members joined Eczema Society of Canada’s Live the Itch Challenge, in which volunteers who live with moderate and severe AD ask their friends and family to “live the itch” for 24 hours.

Participants were asked to set an alarm to sound once an hour for 24 hours to replicate the interruption of the itch, to get a glimpse of the frustration and disruption of what it’s like living with eczema day and night.

Eczema Society of Canada.

READ MORE: From sleep to self-esteem, eczema affects more than your skin

For Allie’s sister Melissa, it was really important to participate in the challenge. “I would try to be supportive of her and say, ‘I know kinda how you feel,’ but I don’t think I fully understood how it really affected her,” Melissa says.

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This was partly because Allie didn’t want to burden other people with what she was going through. “I think a lot of people with severe eczema carry that, because other people maybe think they understand, but they can’t really fully grasp what these people are dealing with,” Melissa says.

Doing the Live the Itch Challenge was a reminder of what her sister goes through all the time. “It was definitely a moment of reflection,” Melissa says, “and I think, too, just as those hours really mounted every hour, you just realize that this is a reality [for] people.”

During the challenge, Allie would send fire emojis in a group text message to her family every hour, and they would respond with supportive messages.

The biggest reward Allie got from the challenge was the recognition of her strength. “My sister said, ‘She’s one of the strongest women I know,’ and it’s… so nice to know that [I’m] not suffering in silence anymore. It’s like, it’s out there, talking about it with my family,” and not being alone in it, she says.

November is Eczema Awareness Month, and the Eczema Society of Canada is inviting Canadians to take the Live the Itch Challenge for 24 hours and set a phone alarm every hour to get a glimpse into what it’s like to be disrupted by the itch of eczema.

Learn more on the ESC website and follow #livetheitch on social media to read about people’s experiences.

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