People with vitiligo have no way of knowing how much of their body will be affected and how much color their skin will lose. But the condition isn’t life-threatening. While there are vitiligo treatments that can restore a person's skin color, “results vary and are unpredictable,” according to the Mayo Clinic. Additionally, there isn’t a drug that can stop vitiligo from progressing.
Vitiligo can set in during childhood, making the process of learning about your body and identity even more difficult. People with vitiligo are often bullied because of their looks, but they also get many insults from people who are not necessarily trying to hurt them. We spoke to four people with vitiligo to find out what comments you should never make to someone living with the condition.
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Don’t ask if you can catch vitiligo
“Somebody asked if it was contagious,” Mariah Perkins, a 22-year-old who has vitiligo, tells Health. If someone expresses a fear of “catching” vitiligo, it signals to the person with the condition that their skin is less than desirable. Perkins’s skin started changing when she was in middle school around age 12, a time when people can be especially vulnerable when it comes to their looks.
McKyla Crowder, 25, has lived with vitiligo since she was 4 years old. She echoed the idea that you shouldn’t be addressing someone with vitiligo by drawing attention to it in this way—even if you don’t mean any harm. “Don’t treat someone with vitiligo as if they’re different from you. It’s not what’s going on on the outside. It’s what’s on the inside,” she tells Health. “It’s just our skin that’s different. We’re still the same person,” Perkins adds.
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Don’t suggest products that can “help” someone with vitiligo “fix” their skin
“One of the most unhelpful comments I’ve gotten is being referred to a product that could cover my entire skin almost like a foundation for your entire body,” Marian De Vos tells Health. People with vitiligo sometimes cover their skin, and it can take much courage to decide to reveal it to the world and leave home without makeup on.
Perkins says she covered her vitiligo symptoms with makeup for years. “Eventually I just weighed the pros and cons of wearing it and not wearing it,” she says. She decided to stop using makeup to hide her vitiligo symptoms, noting that it was expensive to continuously cover her skin.
Crowder also tried to hide her symptoms by using makeup, “especially in high school because that’s when all the boys started coming out of the woodwork, and I realized how different I was," she says. "I started wearing tons of layers to cover it up [and] makeup." But eventually she learned to live without that safety net. “When I was 19 I found out there was a lot of people like me. It helped me come out of my shell,” she says.
People who have vitiligo go through enough debating whether or not to cover their skin and figuring out how to show their beauty to the world. They don’t need product recommendations from onlookers.
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Never refer to a person’s skin as “flawed” or “imperfect”
This should be pretty obvious, but you should never refer to someone with a skin condition as “imperfect." “My advice when dealing with someone who has vitiligo is to never refer to them [as] imperfect—do not even call them perfectly flawed or say they have perfect imperfections,” De Vos says.
“Our skin might look different, but it doesn’t mean it is imperfect," she adds. "It’s already a hard enough job to learn to love yourself when you look different, and when words like ‘imperfect’ or ‘flawed’ are thrown around, it can cause one to start doubting themselves. It’s frustrating when people refer to my skin as ‘imperfect’ when it’s taken four years to fully accept myself and [the] new skin I am in.”
Crowder feels similarly. “Everyone needs to know it’s not a flaw. It doesn’t hurt. It’s not painful,” she says. In the same way that you’d never refer to someone else’s condition as a “flaw,” you should definitely avoid this language when addressing someone with vitiligo.
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Don’t mention newly visible spots
The change that occurs when someone has vitiligo doesn’t happen overnight. “In most cases, pigment loss spreads and eventually involves most of your skin. Rarely, the skin gets its color back,” according to the Mayo Clinic. If a friend or coworker has vitiligo, you shouldn’t point out that you've noticed a change in their skin. This is wildly unhelpful considering people with vitiligo are aware of the state of their own skin and some are still trying to come to terms with how their body is changing.
Crowder says that she remembers people “pointing out that they can see [patches of discolored skin] or new spots." Comments like these won't help the situation, she says. "It’s really hard to accept that your skin and your body is literally changing."
"Mine has actually spread to a much larger area of my body in the past year, so I've had close friends of mine who never noticed it before notice it and say, 'What's wrong with [your] skin?'" Chelsey Hamilton, a 25-year-old with vitiligo, tells Health. "It all comes from a good place. They don't mean to be hurtful. They were just genuinely curious and didn't know what the white patches on my hands were."
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If you’ve just met someone with vitiligo, it might be best to stay quiet
You don’t need to make a comment when you meet someone with vitiligo. You don’t need to say anything about their skin, even if you are trying to be helpful. Not everyone is ready to embrace and acknowledge their condition, and if you make a comment about it to someone who isn’t ready to embrace it yet, it can potentially be harmful. “Every person with vitiligo is different," Crowder says. "Some people with vitiligo don’t like compliments because they’re still trying to accept it.”
Even if someone’s vitiligo symptoms are visible, the person might not want you to mention them. As a general rule, it's best not to comment on a person's body if you're not sure how that comment will land.