Vitiligo was always your personal journey – until you became a parent. Now that you have a new little one to think about, things are different. Yes, your significant other may be supportive in your journey, but they chose to love you – and your spots. This new human, a person that you want to love and protect with everything you have, did not choose you – you chose them. And that changes everything.
For many with vitiligo, the birth of a child can bring a host of new questions, concerns and fears. How will my child react to my spots? Will my child see me differently? Will my child be bullied because of me? And, given the genetic ties of vitiligo, will my child also get this condition?
If you’ve had these thoughts as a parent with vitiligo, you aren’t alone. And while you will likely find yourself explaining vitiligo to your child one day, the reality is that you will always be loved – because you are simply “mom” or “dad,” no matter the color of your skin.
Here are six moments most parents with vitiligo experience.
The moment your child realizes that you are “different”
As young children grow up, there are often a few years before they “see” skin color. Many parents notice a distinct moment when their child realizes that they are “different” because of their skin. For Leah, a New-Jersey based mom and stepmom of four who lives with vitiligo, that moment happened when her son was just four years old. “We were playing in our living room and he suddenly asked me why I have spots on my legs. I didn’t know what to say or how to explain it, so I just said, ‘God made everyone different and that’s how he made me.’ Then one day on the playground, one of his friends asked ‘What’s wrong with your mom’s legs.’ My son answered, ‘Nothing, God just made her that way.’” While this moment can be emotional for parents, the reality is that children are often simply curious – and realizing that you are different doesn’t change who you are to them.
The moment your vitiligo distracts you from precious time with your child
If you struggle with having vitiligo in any capacity, there is likely a moment that your skin will get in the way of meaningful life moments with your children and family. For Daniel, a new dad with vitiligo based in San Francisco, that was the moment he held his son for the first time. “I was holding this perfect child and I wanted nothing more than to be in that moment, but all I could think about were the spots on my hands – it gave me a wave of anxiety.” Whether you’ve missed out on a day on the beach or been distracted during a conversation with your little one, you aren’t alone.
The moment you wish your child knew you before vitiligo
If vitiligo has changed your life significantly or if the condition appeared later in life, you may find yourself wishing that your children – and possibly your partner – knew you before you had vitiligo. This is particularly true when you find vitiligo impacting your personality or everyday life. Dalia, a mother of three who lost 90% of her skin’s pigment, knows this feeling all too well. “It breaks my heart that my kids will never know me with “normal” skin. I truly feel that my husband and kids were robbed of the person I was and know I can be again – the person with an outgoing personality who loved to have fun and had great excitement for life.” While you can’t go back, you can know that you are not the only one struggling to be your ‘old self’ for your family despite your skin.
The moment your child is asked questions about your vitiligo
Humans are curious by nature – and children, having not learned social norms, tend to be the most inquisitive. As a result, your child may get questions about your skin from playmates or schoolmates – and possibly before your child has even noticed your vitiligo on their own. For Sheetal, an Indian mother of two who has lost 100% of her skin’s pigment, this moment first occurred when her oldest daughter was five years old. “A friend asked my daughter why I was white and my daughter was brown. I calmly told my daughter about vitiligo, and she moved on. Kids don’t overthink things, but I also didn’t want her to see a reason to be concerned about it.” Many parents find that while questions do happen, the moments are short-lived – and helping your child know the answer can make the conversation a passing thought.
The moment you want to be confident for your child – but are struggling too
You are the – or at least one of the – most important people in your child’s life. You can’t help but influence the person your child will become, the way they think or how they act. And many parents with vitiligo express wanting to teach their children body positivity and confidence. But what happens when you’re struggling with confidence yourself? For Nadia, a Cape Town mother with vitiligo who has two young daughters, this one hits home. “Nurturing a positive body image is more important than ever. I want to be confident around my daughters even if I have to fake it while I’m still learning to love my new skin. My daughters are growing up in a world where social media makes comparison so easy and I never want their feelings about how they look to dominate their sense of self-worth.’’
The moment you start worrying your child with get vitiligo
For many parents with vitiligo, this fear never goes away. If you grew up with vitiligo and know what it’s like to be a child with the condition, you may have stronger feelings about your child getting vitiligo. And while growing up with vitiligo today may be vastly different than twenty years ago thanks to the increase in awareness and support, most parents still don’t want their child to have vitiligo. For Sheetal, an England-based mom with vitiligo, the idea of her daughters getting vitiligo brings back painful memories. “I know what I went through growing up with vitiligo – I struggled significantly – and I don’t want that for my child.”
The moment you realize your child loves you, spots and all
You might not love your skin – and you worry that your child might not love your skin either. If you can’t see past the white patches, how can your little one? Will they see you the same way you do? And yet, many parents share the moment they realized that their kids love them – spots and all. For Leah, a New Jersey mom and step-mom of four with vitiligo, this moment came to fruition when her daughter asked, “Mommy, when am I going to get my clouds?” The eagerness and excitement in her face was enough to show that she genuinely thought her mother was beautiful – and she wanted to be just like her. At the end of the day, you are still “mom” and dad” – and nothing can change that. Your good morning hugs, goodnight kisses and everything in between have nothing to do with your skin – and they know that too.
What moments have you experienced as a parent with vitiligo?
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.