Thanks to prominent figures in modeling (we see you, Winnie Harlow) and other visible professions, vitiligo is becoming a more and more common sight in popular media. But unfortunately, greater visibility doesn’t always mean greater understanding. Misinformation, false assumptions, and just plain ignorance about the condition are things that people living with vitiligo still encounter regularly. While we know that everyone handles questions and comments about their skin differently, we still wanted to know what knowledge about vitiligo readers wish they could impart to the non-vitiligo public en masse.
“That it’s not contagious” was the most-wished-for bit of information by far. Greater understanding regarding treatment, and empathy for the many different ways those living with vitiligo feel about their skin also made the list.
What do you wish people knew about vitiligo? That’s the question we posed to our readers, and the stories poured in. Read our community’s answers below and join the conversation on Instagram.
Disclaimer: The following answers are the perspectives of readers and not endorsed by Living Dappled. Responses have been lightly edited with brackets where needed for clarity but are shared as is to respect the perspective of each contributor.
What do you wish people knew about vitiligo?
“I wish people knew that there’s no cure for vitiligo, and stop trying to recommend…treatments that I don’t want. Man, I just spent two years of my life trying treatments that I didn’t want in the first place, and they are just so aggressive with your skin that [it] is almost cruel. Just let us live with our skin the way we want to.”
“I wish people knew that it’s okay NOT to say anything about it and it’s okay to just treat the person with vitiligo just like you would treat anyone else. Some people are fine answering honest questions about it but some are not. Everyone deals with it in their own way and we all have good days and bad days.”
“Our skin isn’t rotting.”
“Not contagious! We are fine! We are happy!”
“That it doesn’t define me as a person.”
“[It] is not contagious.”
“Just more! Understanding this condition can affect those with it much further than can be seen.”
“It’s nothing we have to get fixed.”
“I wish people wouldn’t try to convince me it’s ‘good’ when it lessens a bit, just makes me feel bad.”
“That it’s an emotional toll on the person who has it. We don’t want your solutions, we just want to feel loved. And that saying things like ‘well, at least it’s not painful or (enter another disease)’ [serves to] minimize its significance. That never helped me. I was helped by empathy and love.”
“I get a lot of my family telling me that I have my vitiligo because I’m always stressed. They make it seem like I have control over it or I caused it.”
“I just hate uncomfortable questions like ‘Wow. What happened to your face??’ or ‘What’s wrong with your skin?’ People sometimes have no discretion on behavior. I didn’t ask for this…and at least for me it’s something that I cry a lot over…and for me it’s hard to live with. So when someone points it out so harshly it hurts.”
“I wish more research was done, not only is it something one sees externally, [but] vitiligo causes so many other issues internally. Currently I am undergoing medical investigation as it seems I could have lymphedema of the face possibly caused by my immune system being affected by the vitiligo. So now I have face swelling along with my skin all over my body looking like a map of some unexplored planet dotted with stars [and] planets along my arms.”
“That it’s ok if you ask us respectfully what’s up with our skin, we are fine explaining how we shine from the inside out.”
“That it’s not contagious.”
“There’s nothing ‘wrong’ with our skin.”
“That it is an autoimmune disease which affects the white blood cells in your pigment/skin, and it’s beyond the person’s control. All of us who suffer with vitiligo have to learn to live with it. It’s not life threatening.”
“That it doesn’t hurt!”
“It’s not contagious.”
“No I wasn’t burned in a fire, no it’s not contagious.”
“The harsh truth is this makes me depressed. It’s an emotional rollercoaster when a new spot appears. All I want is empathy!”
“I’m 63 with vitiligo and the only time I think about it is when I look in the mirror. Always remember you are beautiful and wondrously made.”
“It’s not contagious.”
“I wish we could accept that there are different ways to approach it. Some might choose to treat it, others might love theirs, while others cover [it] and there’s no one right answer. We can all support each other and handle it differently.”
“It’s not contagious!”
“[That] yes, white people can have vitiligo too.”
“That nothing is wrong with my skin.”
“That vitiligo is different for each person.”
“That it’s not contagious.”
“White people have it too.”
Erika Page is the Founder and Editor of Living Dappled. After getting vitiligo at the age of seven, she lost 100% of her pigment to the condition and today lives with universal vitiligo.