Explaining Vitiligo to Others

While vitiligo is not life-threatening or harmful, it can cause problems with social stigma, depression, and anxiety because it affects a person's physical appearance. 

As such, if you experience this disorder, talking about it with loved ones, friends, and family is essential for coping. This means learning about vitiligo, being open about its impact, and actively communicating about it.   

This article discusses tips on how to explain vitiligo to others, as well as coping strategies.

The Impact of Vitiligo

Essential to a productive conversation about your condition is a sense of what vitiligo is. A noncontagious skin disorder that affects people of all races and ages, vitiligo is caused by the destruction of melanocytes, the skin cells that produce melanin (the substance that gives skin its color). With research ongoing, at this time, vitiligo is believed to be an autoimmune condition, a disorder in which the body’s immune system attacks and kills these cells.

Though the patches are prone to sunburn, they typically are not painful. While the condition can spread and there is no cure, it’s neither dangerous nor life-threatening. With management and therapy, the discoloration can potentially be reduced.

However, because vitiligo affects physical appearance, this condition can significantly impact mental health and quality of life. It leads to:

• Lowered self-esteem: Visible skin discoloration can significantly impact self-esteem, as those with the condition may feel unattractive and different than their peers. It’s important to communicate how this condition is affecting your sense of self.
• Psychological effects: Associated with low self-esteem are depression and anxiety, conditions that are common in people with vitiligo. Management of the condition often involves having conversations about these related issues.
• Stigmatization: Due to its effect on outward appearance and misconceptions about the condition, including the false belief that it’s contagious, people with vitiligo may become socially isolated and experience stigma. Anxiety, depression, and low self-esteem further contribute to this issue.

It’s important to be able to talk about your experiences living with the condition. Being open to your feelings and willing to discuss them is crucial for effective communication. If you’re struggling emotionally, be sure to talk to your doctor. Individual and group counseling, among other methods, can help you cope.

Talking About Vitiligo

Living with vitiligo means more than just taking active steps to manage its symptoms. It also means advocating for yourself and being able to explain and discuss the condition. However, as with any medical condition, these conversations aren’t always easy to have. This is especially the case because vitiligo is relatively rare.  

So what are some keys to discussing vitiligo? According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMSD), several points should be emphasized, including:

• Vitiligo is chronic, meaning it’s something you live with for the rest of your life.
• It can be managed, but it can’t be reversed. The aim of treatment is to slow or stop vitiligo's spread, promote melanocytes, and restore some pigmentation to affected areas of skin.
• It can be hard to live with because it affects the way you look—not only to others, but to yourself. It’s not just a cosmetic condition, and it can impact many aspects of life.
• Help is available through many channels. With the help of a dermatologist, support from friends and family—and for many, individual and group mental health counseling—vitiligo can be effectively managed.

Talking to Children About Vitiligo

Though vitiligo most often arises in adults, children and adolescents can also develop the condition. The development of depigmented skin in younger people can be devastating, leading to low self-esteem, embarrassment, and self-consciousness. In turn, these feelings can lead to challenges making friends and social isolation.

It’s therefore essential for parents to explain the condition not only to their children, but also to teachers and peers. Tips for discussing vitiligo with your child include:

• Talk to the dermatologist: Learn about the condition and its prognosis by talking with your child’s dermatologist (specialists of conditions of the skin, hair, and nails) one on one. A medical professional can provide helpful information and resources for having the discussion.
• Find the right time: It’s best to take on a topic like this when both you and your child are comfortable. Try to be calm and behave as normally as possible when you’re having the talk.
• Be honest and direct: Cater your language to your child’s age and avoid overcomplicated language. Keep in mind that children often need to have information repeated to them.
• Avoid negative framing: You don’t want your child to believe that their situation is dire. While the condition is not curable, emphasize that doctors are going to find the best way to treat it.
• Prevent stigmatization: Make sure your child understands that vitiligo arises on its own and is not contagious. Emphasize that it can’t stop them from living a full and active life.
• Emphasize openness: Be clear with your child that you’re there for them and willing to support them and listen to their concerns.  

A Word From Verywell

As tough as it can be to live with vitiligo, it’s important to remember a couple things. You can manage it, and you’re not alone. With good care and lifestyle changes, as well as the support of family and friends, this disorder can be effectively managed. Talking to others about the condition—being open about it and how it’s affecting you—is part of taking it on.

Having these conversations can also be a means of advocacy. Vitiligo isn’t well-known, so you may find yourself educating others about it. In doing so, in raising awareness about vitiligo, you make the world a better place for everyone with this condition.