If the title of this article drew you in, then chances are that someone you care about is living with vitiligo.
Perhaps they were only recently diagnosed and this is all new to you (in which case, you might want to learn more about vitiligo as an autoimmune disease). Or maybe you have both known about their condition for some time now. Either way, the fact remains that there are just some things you shouldn’t say to someone with vitiligo.
The good news is, you’re here! You clearly care about someone with vitiligo and you want to make sure you don’t hurt them with your words. You’ve taken the first step toward ensuring that you won’t make them feel misunderstood or unsupported just by clicking on this article, and we’re here to help you take the next step: Removing the following from your vitiligo vocabulary.
Here are a few misguided statements that people with vitiligo hear all too often, which should be avoided during caring conversations.
What’s wrong with your skin?
This one is hurtful whether you’re speaking to someone with vitiligo or any other skin condition, from eczema and acne to rosacea and beyond. It implies that there’s a “right” way for your skin to look. It’s commonly considered “normal” to have even-toned, unblemished skin when truthfully, that’s far from everyone’s reality.
Yes, those living with vitiligo have a condition in which pigment is lost from areas of the skin, causing white patches, but that doesn’t make our skin wrong. It’s just different!
Were you in a fire/an accident?
The implications behind a question like this are two-fold. First, it assumes that the state of their skin is so “abnormal” that it must be the result of some type of intense, physically traumatic experience. Second, it leads with a sense of morbid curiosity (at best) or pity (at worst) around their skin’s appearance, expecting it to be accompanied by a tragic story.
At least it’s just a skin thing.
This one is frustrating in part because we don’t actually know that vitiligo is just a skin thing. For starters, vitiligo has also been known to affect pigment in hair and eyes, although this is less common.
But beyond that, vitiligo is an autoimmune disease, meaning the body attacks and damages itself — specifically, immune cells attack melanocytes, which produce the skin pigment melanin. And the thing about autoimmune diseases is that if you have one, you’re more likely to get another.
This concept of “comorbidity,” i.e. the simultaneous presence of two chronic diseases or conditions, is prevalent within the vitiligo community. About 15 to 25 percent of people with vitiligo are also affected by at least one other autoimmune disorder — particularly autoimmune thyroid disease, rheumatoid arthritis, type 1 diabetes, psoriasis, pernicious anemia, Addison’s disease, or systemic lupus erythematosus.
So calling the condition “just a skin thing” is not just misinformed, it’s also minimizing the anxiety that those with vitiligo may experience around the possibility of when they might discover that they have another autoimmune disease, and which one it might be.
I barely even notice it.
While this might be a true statement, whether or not you notice their spots, the person you’re speaking to is likely keenly aware of where each one is on their body, how much it might have grown, etc.—which is to say, it’s an important part of them that they’re keenly aware of.
By saying you don’t notice it, you’re minimizing the importance of vitiligo as a part of their identity and implying that you don’t see all of who they are.
It’s not contagious/I can’t catch it from you, right?
The answer, of course, is no. Vitiligo is a genetic disease and is not contagious and cannot be transmitted from one person to another, topically or otherwise.
But it’s not just the ignorance that makes this question hurtful, it’s the sentiment. By expressing concern that the condition might be contagious, you’re conveying that you wouldn’t want to catch it if it were, which positions vitiligo as something undesirable.
Imagine someone asking if something about your appearance, which you have no control over, like perhaps your eye color, is contagious or could be “caught” from you. Wouldn’t that make you feel badly about yourself?
At least you don’t have that many spots/they’re not that large
Here’s the thing about living with vitiligo: it’s unpredictable. There’s no way of knowing where the next spot will appear, how large it will be, whether it will continue to grow, or anything else about the progression of how the body will continue to attack its melanin-producing cells.
The specific spots you’re seeing on the person in your life at a particular point in time are unlikely to stay exactly as they are. So with a statement like this one, you’re implying that if they did have more of them or they were larger, the situation would be “worse” — when that very well may be the case in the future.
Additionally, many people with vitiligo experience anxiety around the total lack of control of how many spots they get or how large they’ll become, and this statement serves as a painful reminder about when and where on their body that might happen.
But beyond all of that, there’s one key point: No matter “how much” vitiligo you have, it’s valid and okay to struggle with any amount — it’s not the amount you have that makes it matter!
Is that a new spot?
We’ve already noted that many people with vitiligo are already hyper-aware of the size and positioning of each of their spots. If this is the case with the person in your life, then pointing out a new spot is likely to bring up some of the same feelings of stress they experienced when they first uncovered the new spot themselves.
However, in the case that you happen to be pointing out a spot they weren’t previously privy to, you may be bringing up feelings of stress and panic around the fact that they hadn’t noticed it on their own, and whether there might be more spots they’re unaware of.
Whether the person you’re talking to typically prefers to cover their spots or bare them to the world, outside opinions on this topic can be anxiety-inducing! Which brings us to…
[Insert product here] could totally help/fix it/cover it up.
Whether a person living with vitiligo chooses to mask their spots or not is a very personal decision, and one that can cause tension within the vitiligo community. At Living Dappled, we subscribe to a “do whatever makes you feel the most comfortable in your skin” mentality and support decisions in both directions!
That said, if the person you’re speaking with is on a journey toward embracing their spots, then chances are a statement like this could make them feel like you’re saying their spots are something that should be covered up. This could set them back in their goals of finding the courage to bare their skin to the world as it is.
You shouldn’t cover them up, you should embrace them.
On the flip side, if you’re speaking to someone who prefers to wear long sleeves or apply makeup to cover their spots, that’s a valid choice—and one that is 100 percent their choice to make, not anyone else’s.
People without vitiligo obviously have the right to decide when they wish to wear makeup for whatever reasons feel right to them, whether they’re looking to conceal a blemish, even skin tone, emphasis a feature they love, or anything else. So, why shouldn’t those with vitiligo be empowered to make the same choices for themselves?
Flaws and imperfections are beautiful.
This is a classic example of intent vs. impact. Your intent with a statement like this is probably to assure the person you’re speaking to that you find them beautiful. But the impact, unfortunately, may be just the opposite — what they’re likely to hear is, “I see your vitiligo spots as flaws and imperfections.” Just because their skin is different doesn’t mean it’s imperfect or flawed, and referring to it as such can make it even harder for them to love themselves as they are.
At least it’s not life-threatening/you’re not dying/it’s not cancer.
In a Brené Brown talk about Empathy vs. Sympathy, the famed researcher notes, “Rarely, if ever, does an empathic response begin with ‘at least.’” She points out that statements that start this way are typically trying to apply a silver lining to something painful that someone has shared, which in turn, minimizes the impact the situation really has on the person sharing.
Yes, things could always be worse. But that shouldn’t mean that we can’t empathize with someone about a bad situation of any severity without specifically pointing out the ways that it could be worse. All that does is make the person feel ashamed for sharing with you, and misunderstood that you can’t understand their stress or pain.
So, what can you say to support someone with vitiligo?
Now you know what not to say or do. To learn about things you could say or do for the person with vitiligo you care about, check out these ways to support someone living with vitiligo.
If you have vitiligo, how can your loved ones support you?
Alicia Valenski is a writer and editor living with vitiligo in Richmond, Virginia with her partner, Andrew, and rescue pup, Stella. She is the managing editor at a local, independently-owned media outlet. Her work has been featured on Elite Daily, HuffPost, USA Today, and more.