What It’s Like to Raise a Girl with Vitiligo, From a Mom Who Knows
It was about the size of a quarter. A small, white spot along Erika’s lower spine. Erika was seven years old and in the bathtub with her younger sister, Carlin. It was the first time I saw it. And I knew. I knew it was vitiligo. I knew my daughter’s life – my life – had changed. She wasn’t just a girl anymore, she was a girl with vitiligo.
How did I know? A lot of people go through their entire lives without hearing the word ‘vitiligo’ or knowing someone who has it. Not me. My mother, Erika’s grandmother, has vitiligo. She got it as a teenager in the 1940’s. It started around her eyes. There was no known cause. There was no known cure. Mom didn’t pursue treatment – there was no treatment to pursue.
So, I grew up with a mom who had spots. The vitiligo was mostly on her joints – elbows, knees, knuckles. Of course it was more noticeable in the summer when her spots would almost glow white in contrast to her tanned skin. But it didn’t stop Mom from wearing shorts, sleeveless shirts or even bathing suits. I don’t remember Mom’s spots being a big deal. They were just there. A part of her. Like her brown eyes or the glasses she wore.
Realizing I was the Mother of a Girl with Vitiligo
Now I found myself, the daughter of a woman with vitiligo, facing the task of being the mother to a daughter with the same skin issue. And as I looked at that small, white spot I wondered what to do.
The child in me shrugged it off. It’s no big deal. Your mom had it and she’s fine. In fact, she’s great! And, after all, it’s not cancer. Erika’s not dying. It’s only on her back – so far. The insecure teenager in me cried out. You’ve got to get help! Seek treatment! Find a cure! Life is hard enough without looking like a freak! This battle took place in my head in the matter of a few seconds. Then I got the girls out of the tub.
The first thing I actually did was to take Erika to her pediatrician. A good doctor, he was a little baffled by the spot and made a couple of suggestions. I followed them to the letter hoping against hope that it wasn’t vitiligo after all. But the spots continued to spread and the pediatrician eventually sent us to a dermatologist. It took another few months to get that appointment. By the time we saw the dermatologist the spots had spread to the front of Erika’s knees and further along her spine. Maybe her elbows, too. The dermatologist took one look at her knees and said, “It’s vitiligo.”
I just nodded my head. He was surprised that I knew what vitiligo was. I was surprised that nothing had changed in 40 years. No known cause. No known cure. The doctor did give us a topical steroid which seemed to work at little at first. We saw freckles appear in the areas where it was applied. But it was a steroid and not meant for long-term use. The freckles disappeared when we stopped using the ointment.
Raising a Daughter with Spots
At first, Erika seemed okay with her spots. We didn’t make a big deal out of them. They weren’t a big deal – not to us, not to her friends. I remember one day when a group of them – sisters and friends – colored in all of Erika’s spots. The white spots were gone, replaced by splashes of bright green, pink, blue and orange, like a map of a strange world. The spots continued to spread, much worse than my own mother’s had ever been. I asked Erika once if her spots bothered her. She told me that if she woke up the next day without any spots, the only thing that would change is how everyone saw her. She would still be the same person. My wise daughter.
Then came the teen years. Erika started high school without her safety net of middle school friends. But she found herself immersed in a new group of friends based on their interest in cross country running. From my perspective, I saw a beautiful, smart girl facing the challenges that we all go through coming into adulthood. Erika had friends, even a boyfriend. She told me one story about a boy who made a comment about her spots in class. But that boy was quickly put in his place by a girl who stood up for Erika and the matter was over. I know now that Erika hid a lot from me about her feelings during this time, about her own struggles and sense of self-worth. But with the exception of this one story, I don’t think she was ever ridiculed, teased or bullied about her spots.
I did take Erika to another dermatologist around this time and we were told about treatments that included steroid or exposure to high levels of ultra violet light. Of course, the steroids and UV light had their own potential dangers and Erika’s spots were so widespread that the possibility for success was low. Together we decided not to pursue these treatments.
My Role in Her Life with Vitiligo
And that was that. I couldn’t help Erika. I couldn’t ‘cure’ vitiligo. I couldn’t make her spots go away. I couldn’t even really empathize with her. I didn’t have spots. It was her journey. Not mine. I left Erika alone to deal with her spots the best she could.
It was hard. Hard to accept that I couldn’t help my child. Hard to watch her struggle with it. But it was okay, too. It wasn’t any different than any parent watching their child not making the team, being held back in math, being rejected by the ‘cool kids.’ All of these are the struggles that come with growing up.
As the mom, I was old enough to know that it wasn’t the “failure” (to make the team, understand Math, to have ‘normal’ skin) that would define Erika. It would be how she handled the struggle. My job was to give her the tools to handle it with grace and dignity – and at least a little bit of a fighting spirit.
Karen Drabik Spivey is the mother of Living Dappled founder, Erika Page, and is the daughter of a woman with vitiligo. Raised in Michigan and Virginia she is the proud mother of four. She and her husband have resided in Maryland for the past 30 years.
Excellent post, Karen. Love the website, Erika. Kudos to both of you amazing women!
This is beautiful! Thanks for sharing your story. My daughter is 5 years old and her first spot came out when she was 11 months. It’s been hard for us, but I know that we will endure in this journey. She is a beautiful, strong, happy confident little girl, and I’m really proud of her.
I love this so much. I can relate as my daughter was just diagnosed. Thank you for sharing your story.
I relate so much to this story. My daughter is seveteen and has vitiligo much like Erika. She does however suffer from self esteem issues and I feel so much of it is due to social media. While vitiligo is a cosmetic condition it is the psychological part of it that is difficult to handle – especially for teenage girls. There are certain things she does not do because of her skin. She also spends a lot of time covering up her spots with make up. Sometimes she misses out on doing our things because she is spending time putting make up on her skin. I want to help her be confident with herself the way she is. So I am looking for any help or support groups or suggestions anyone might have.
Leah, thanks for the message! I can relate – as someone who wears tanner to cover my spots, I know it can take time and also be stressful to go without it. I don’t know of any support groups specifically for teenage girls. However, you can find in-person support groups here: https://www.globalvitiligofoundation.org/support-groups. And we’ve shared a list of great Instagram accounts to follow for digital support and inspiration: http://livingdappled2.wpengine.com/28-instagram-accounts-to-follow-if-you-have-vitiligo/.