It’s been 4 years since our daughter (the middle tartlet, or MT) was diagnosed with vitiligo (read here for my initial reaction). Vitiligo is an autoimmune disease that attacks the pigment in the skin, changing the body’s normal skin tone to white. There really is no rhyme or reason as to how quickly or where it spreads. My husband also has it (it is hereditary), but his hasn’t spread like our kiddo’s.
We can never tell just how much MT’s vitiligo has spread until she has a tan. Being that we are in the midwest and have 6 months of winter, her summer tan fades – mostly her face – and her vitiligo is hardly noticeable.
Well, this past week, we escaped the wintry landscape of Chicago and headed to sunny Florida. I knew, regardless of how diligent we are with our SPF 50, sun hats and rash guards, our olive-skinned babe would soak in the sun and we’d see how much her vitiligo has spread this year. It seems that every year, there are 50% more spots than the year before and this year is no different.
I usually feel a bit uneasy, not knowing how she will respond to seeing the difference. Will this be the year she becomes self-conscious? Will she still love her spots? Will she ask how to cover it up? I always take my cues from her, if she’s happy, I’m happy. If she’s sad, we talk and try to find a solution. So, this year, after a few days in the sun, MT sits next to me and we start to talk.
“Mom, did you see my new spot on my hand? It looks like a dog.” – MT
“Let me see. Oh, I like it! What else have you noticed?” – me
“My hands are pretty white. More than before.” – MT
“I see that. How do you feel about that?” – me
“It’s okay. I like my spots.” – MT
“Have you noticed them any place else?” – me
“I have more on my feet and legs. I still have my happy face though. Does it look like I have make-up on my eyes? It’s white on top now.” – MT
“That happy face is my favorite still. No, it doesn’t look like you have make-up on. I hardly notice it. Does it bother you?” – me
“No, not really. I have white under my nose now too.” – MT
“You know, you can always talk to me about this. If you find new shapes, if you are happy or sad.” – me
This led to a conversation about what could be done, if she wanted a change. I explained that we could do a sunless tan and that it was a temporary thing (she doesn’t want to lose her spots – it is part of who she is). I let her lead the direction of the conversation, never wanting her to think she needs to cover her spots or be ashamed of how she looks. At this point, she’s still happy. Still loves her spots on her 8-year-old body. Still embracing the idea that she is a messenger, and will teach others about vitiligo.
I tell you what. She is my strength. In a society so set on looks and fitting in, she embraces her differences and knows that she is beautiful inside and out! When asked about her spots, she explains that “it’s just my skin. Some people have moles or freckles and I have spots.” Her self-esteem has never been affected! She always wants to perform in front of people – at school in talent shows, on vacation – singing karaoke or dancing poolside – she is comfortable in her skin. For that, I am grateful!
I’ve been asked about different treatments we’ve tried, and, to be honest we haven’t gone out of our way to change her spots. We went gluten-free for a bit, wondering if she had an intolerance and if so, if we took it out, would the rate at which her vitiligo is spreading slow down. It did not, though we did notice a marked improvement in her attention and angst in situations (that’s another post all together). We tried steroid cream – nothing. We notice that if she does burn (which we do NOT want to happen), her skin does re-pigment, though only short-term – which I guess would mean she would respond to UVA treatments (we aren’t going there… at least not until she lets us know she needs a change…)
Do I get sad? Sometimes. I know that she is still in a great age of acceptance. I think about middle school, bullies, prom, college… She’s asked me if she has children, could they have it too – and I tell her yes. I’m not sure how she feels about it, but it is something I think about too. Never for a minute do I want her to feel inferior, not beautiful or less than. I know there will be jerks out there who will point or say something insensitive. I worry. But then, I’m reminded to take one day at a time, to look at our confident girl and follow her lead.
Vitiligo takes away pigment, but not the upbeat, positive attitude of our 8-year-old.