If you live with vitiligo, you likely know what it’s like to be approached by a stranger who asks about your skin. While the intention behind the question is more often than not driven by innocent curiosity, the resulting questions can elicit a range of emotions on the receiving end.
Growing up with vitiligo, I was often the recipient of such questions. My vitiligo started at the age of seven and by high school, it was obvious that I had a skin condition. The white patches were visible on my hands, arms, neck, feet, legs and more. During the summer, my job as a lifeguard and determination to wear shorts only fueled the opportunities for these types of engagements.
Questions from strangers were articulated in countless ways. The more thoughtful ones were usually framed as medical questions and occasionally paired with a personal story about someone they knew who also had it. Unfortunately though, more often the questions were posed as a guessing game of what could have possibly happened to my skin. “Were you in a fire?” or “Were you in a bike accident?” are the two that stick out most in my memory.
From children, the questions were usually harmless and almost comical in nature–truly showing the natural curiosity and innocence of children. “Why is your skin tie-dyed?” and “Why do you have clouds on your skin?” were two of my favorites. Of course, the question was also typically followed by an embarrassed parent trying to quiet their child while apologizing profusely.
Despite the approach, these people all wanted to know the same thing: Why does my skin look the way that it does?
Most of the time, I was happy to answer their questions. I didn’t mind the curiosity and appreciated the opportunity to talk about what to me felt like the ‘elephant in the room.’ Yet sometimes, I was also trying to process the emotional punch of being reminded that I looked different–and apparently even looked like the victim of a serious trauma or accident. And that took a toll that lingered beyond the conversation.
Whether you want to talk about your vitiligo with others or not, the reality is that many living with the condition are asked about it. After years of fielding these questions, I’ve come to find my own ‘rules of thumb’ for navigating these situations. Here are some tips to keep in mind when asked about your vitiligo–and a few responses that I’ve used over the years.
Tips for answering questions about your vitiligo
How do you reply to questions about your vitiligo? Here are a few of the things I keep in mind when navigating these situations.
#1 Speak to your comfort level–including not at all
Most importantly, remember that you are in control of the way that you respond–or don’t–to the question. You don’t owe a response simply because the question was asked. For some, questions are a welcome opportunity to raise awareness for vitiligo or share their story. For others, questions may feel intrusive or insensitive. Perhaps you can identify with both of these depending on the day or your mood. No matter where you fall within the spectrum, your feelings are real and valid. Choose to reply based on your comfort level, even if that means choosing not to answer the question at all.
#2 Speak to the specific person
I typically consider the person who is asking the question when choosing how to reply. Is the question coming from a child or an adult? Is it someone that I know well, or a random stranger? These considerations help me choose how to address the question in a way that might be best understood by the person asking it. For example, a child likely won’t know the word “vitiligo” or be able to understand the concept, while they do understand colors and skin. An adult, however, may have heard of the condition or at least would be able to walk away with new education about the condition.
#3 Speak to the specific situation
I also often consider the situation when responding to questions about my vitiligo. Is it a public or private space where the question is being asked? Is there time to have a discussion, or will this be a short exchange? For example, if I’m checking out at a cash register where others might be listening in and I have only a few short seconds to reply, I might consider a different response than if a coworker asks me while we’re eating lunch together. While one situation requires a quick reply, the other situation allows for meaningful conversation.
Responses you can use when asked about your vitiligo
Looking for some quick replies that you can have in your back pocket? Try one of these the next time you’re approached with questions about your vitiligo.
When speaking to adults:
- I’d rather not talk about it, thanks.
- It’s called vitiligo and it’s an autoimmune disease that causes loss of pigment.
- It’s a skin condition that causes loss of pigment but isn’t contagious.
- It’s called vitiligo. Have you ever heard of it?
When speaking to kids:
- You have one skin color and I have two skin colors. Isn’t that neat?
- Have you ever seen skin that looks like this before?
- This is how my skin was made.
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.