If your child is struggling with vitiligo, they aren’t alone. Vitiligo can be associated with depression, stigmatization, low self-esteem and social embarrassment. According to Dr. Pearl Grimes, dermatologist and director of the Vitiligo & Pigmentation Institute, the disease is particularly problematic for children in their formative years and negative experiences can lead to impairment in early adulthood.
This is hard to hear, especially as the mother of a child with vitiligo. My daughter Leah is nine and has had vitiligo for six years. Yet not every child approaches vitiligo in the same way. There are several factors that can affect how children respond to having vitiligo, including gender, location of spots, culture, race, ethnicity and age.
“Some kids are naturally more resilient,” said Dr. Lisa Schuster, a child psychologist specializing in trauma and helping families deal with stressful events and experiences. “Some kids by nature are better equipped or better able to handle the psychological side of living with vitiligo.”
And she would know – in fact, she has vitiligo herself. Diagnosed in middle school, Dr. Schuster first lost pigment on her face and got a lot of questions about it. The key, she says, is acceptance.
“It’s essential to teach your child to accept vitiligo,” said Dr. Schuster, who is also an assistant professor of psychiatry at UT Southwestern. And parents play a big role this mission. “So much of the way your child responds to stressful events is a reflection of how you are dealing with it. How you talk about it, your attitude and outlook on it will influence the way your child views and sees the situation.”
Parents are the experts on their children said Dr. Schuster. But that doesn’t mean they shouldn’t reach out for help and support. And that’s why she offers advice on how to help children struggling with vitiligo.
#1 Let others know the truth about your child’s vitiligo
Education is an important part of supporting your child. Dr. Schuster suggests educating those people who are a part of your child’s life – family, friends, teachers, coaches. I’ve found this to be important as we cope with vitiligo. A year ago, I started to speak up about vitiligo via social media and began to bring it to the attention of Leah’s teachers. It’s made a big difference in our lives, especially as people who knew us for years but didn’t know she had vitiligo were able to help educate their children.
#2 Help your child fit in
It’s important to anticipate situations that are going to be difficult and be proactive about approaching them, whether it’s a new school year, new classroom or a new group of kids. Each year, I write to Leah’s teacher and tell her what vitiligo is and what she could expect from other students as they notice it. I also do my best to make sure Leah has a friend by her side as she goes into new situations – someone she trusts who has her back.
#3 Stay involved in your child’s school and activities
Dr. Schuster also recommends staying involved in your child’s school and extracurriculars. I like to volunteer at school as much as possible to not only to help the teacher and classroom but to see how she is interacting with her classmates. It helps me to get a picture of how comfortable she is in her school environment.
#4 Require respect from others
Do not tolerate teasing or name-calling, says Dr. Schuster. Setting up a healthy environment for your child is important. If you believe a line has been crossed when it comes to social interaction, it’s okay to step in and talk to the teacher or counselor and do something about it. Leah and I often discuss the difference between curious and hurtful words. For example, if a child asks, “What is that?” they are just being curious. However, if they say something that makes her sad or upset, those are hurtful words. If it comes to that, I encourage her to not only tell the person that their words were hurtful, but to tell me or another adult.
#5 Follow your child’s lead
Ask, don’t assume, says Dr. Schuster. Let your child lead by asking them how they feel, what they want to wear, and how they want to handle each situation. You don’t want to project your fears and concerns onto your child. I don’t usually bring up vitiligo with my daughter. Instead I just follow her lead, let her wear what she wants and talk about vitiligo if she wants to.
#6 Let yourself and your child be sad sometimes
Being happy about vitiligo all the time isn’t realistic. It’s a difficult diagnosis and it’s normal to experience disbelief, doubt and disappointment. However, letting your child be sad isn’t a natural instinct – in fact, it’s something I have to work towards. My instinct when someone is crying is to comfort them first, saying “Don’t cry. It’s okay.” Instead, I’ve realized I need to simply recognize her sadness by saying something like, “I understand you’re sad. Some days I’m sad too. It’s normal to feel that way. I am always here for you whether you are happy or sad.”
#7 Find an avenue to talk about how you are feeling
If you’re having a lot of difficulty, it can translate to your child’s reaction, response and the way they will cope. It’s important to be aware of your own resources and get support and outlets to talk about what’s happening. I know this first-hand. Being involved in Living Dappled has given me an outlet to write about my feelings and also understand how other people navigate their own or their child’s vitiligo. Being a part of the vitiligo community of patients, doctors and advocates has helped me through hard times.
#8 Try to be in the now
Try not to worry about the future and “what if,” said Dr. Schuster. Instead, focus on what your child needs right now. This is by far the hardest strategy for me. In fact when I first read this one, I was upset. As a parent, it seems crazy not worry about your child’s future. Sometimes all I do is worry. With that being said, I try not to let the worry of the unknown future control my life. I wake up each day and encourage, support and love my daughter the best way I know how.
#9 Role-play with your child
Role playing can help your child cope with everyday moments. Talk about what to say if someone asks your child about vitiligo. Switch roles and pretend that you have vitiligo – sometimes kids can imagine questions that you can’t. This strategy can allow your child to feel comfortable in most situations knowing that they have responses to future questions regarding their vitiligo. As a parent to a child who is shy and generally uncomfortable in big crowds or new situations, this one is particularly important for her.
#10 Remember vitiligo is a bigger conversation about diversity and acceptance
We are all different in our own ways and there are things that make all of us unique. One way to reinforce this idea with your child is by being open about diversity and sharing real life examples of people already in your child’s life.
Do you have a child with vitiligo? How do you help them cope?
Julie Hartley is a proud mom to Leah who has vitiligo. Leah loves animals, art and playing with friends. Julie lives in Northern Kentucky with her husband Chad, son Chase and Leah.