Telling someone with eczema to "stop scratching" is one of the least helpful things you can do, says Diamond. Usually, the itching starts out as a tingling sensation that grows and grows until you can no longer fight the urge, says Lisa Choy, a life-long sufferer who serves on the board of directors of the National Eczema Association. And once you start scratching, the itch goes deep and becomes insatiable. During serious flares, you might feel itchy from head to toe.
People are afraid of you.
When severe eczema covers much of your body, people are bound to stare. Sometimes people shy away because think it's contagious (it's not) or unattractive, which can make sufferers feel self-conscious. "I had to learn that while some people find skin problems repulsive, others think it's no big deal," says Diamond. "I've been in a long-term relationship for over 20 years now. It just takes the right person to make a good match."
It can rule your life.
Everything from what you wear to the weather can cause extra-sensitive skin to flare up, which means your entire day can easily revolve around skincare and trigger avoidance. "If someone says: 'Hey let's go camping,' my first thought is not: 'Where? That sounds like fun!'" says Choy. "It's more like: 'Ugh, camping? What does that mean for me and my skin?'"
For Vaune Kostecki, who has had severe chronic eczema her whole life, just the thought of wearing dresses or sleeveless shirts makes her uncomfortable. And she'd never jump in a pond or a lake for fear of catching something, thanks to the open cuts on her skin from scratching. Even figuring out how to exercise can be tricky. "Heating up and sweating makes me itch uncontrollably," she says.
There's a lot of trial and error.
While some people with mild eczema might do well with basic skin care and medicated creams, others require light therapy or steroids and some need hormones or biologic drugs. Finding an effective treatment can be a lifelong struggle, and what works at one point might not at another.
To further complicate matters, your personal triggers can change. For example, the sun never used to bother Kostecki, but now that she's 54 she says she can't leave her skin exposed to the rays for more than 20 minutes before the itching starts up. "It's a condition that never stays the same, so it's kind of like this roller coaster,
Choy feels lucky to have found treatments that mostly keep her eczema under control. But she recalls mornings when she didn't want to get out of bed and face the world. Even on days when she didn't have to go to work, she dreaded leaving the house to get groceries because that would mean she'd have to talk to people and they'd see her skin looking like a red and irritated mess.
The stress of constantly having to think about potential triggers, like whether your clothing will make you itch or the weather will irritate you, can quite literally get under your skin when you have eczema, says Choy. "You want to be a normal person who doesn't have to think about those things."
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