June is Vitiligo Awareness Month
Vitiligo runs on my mother’s side of the family. Mom has it, my grandmother had it and my aunt has it. My aunt is pretty much 100% de-pigmented from it. Looking back, I think the women in my family who have it – all seemed to get vitiligo in their late 20’s, early 30’s. So, I assumed I wouldn’t “get it” while heading into my 40’s.
“…her ugly skin might clear up.”
No one ever called “it” by its name that I can remember. I don’t think they realized it had a name. I remember my grandma always saying if she could just rub in enough Vitamin E capsules her “ugly skin might clear up.” (Those were her words, not mine.)
As a child, I remember one relative saying that my grandfather must have brought some disease back when he was off fighting in WWII. I also remember being told I probably wouldn’t get it because my skin is more olive toned like my father’s side of the family. Those are the things I can remember. Obviously, no one called it beautiful, exotic or unique the way many do today.
The whole world has different definitions of beauty or attractiveness. It’s true that the way we think and talk shapes the way our children and future generations think.
Like everyone with vitiligo, I have a story. We all do. For some, the story began as an infant and you can’t remember not having it. The other side of it, getting it later in life, is my story. I was so far removed from thinking about vitiligo that when it showed up – I had no clue. Even having a mother with vitiligo didn’t cause any light bulbs to come on for me.
I seriously thought I had somehow gotten dirty and tried to wash my arms the first time I noticed vitiligo.
Then…. a spot here that grew larger. More spots over there. A visit to the doctor. Frantic midnight searches online. Disbelief that there isn’t a medicine you can take.
I began to ask the questions that we ask when we find out we’ve got vitiligo. Isn’t there an ointment that will make it heal? An antibiotic? You just know there has to be something you can do to change the tide. To stop the depigmentation.
Oh, and there’s a lot of ‘sharks’ out there who want to take advantage of your desperation. They prey on those who haven’t reached acceptance. So, you’re willing to look at all kinds of vitiligo photos on the Internet. Visit that site offering supplements to “cure vitiligo.” You’re willing to read that stupid article that says you should bathe in cow urine for a cure. For the record, I did not try that one.
You search out groups or organizations. A few years ago, there weren’t many. Now, you can find at least a dozen pages or groups on Facebook alone related to vitiligo. We’ve now got Vitiligo Awareness Month. We even have World Vitiligo Day on June 25. But, when I first started searching, resources were limited.
So. You try things.
And, if you’re like me, you try light treatments.
You’ll stand in that box with no clothes on and a paper drape.
With your arms out, eyes squeezed shut. Silently praying that your skin will start responding because last night you dreamed that you woke up and half your face had lost pigment. Maybe you even got up to check the mirror, because those spots seem to just appear overnight. Yeah. That was me.
The light treatments didn’t work for me. They were also super expensive and most insurance companies have a thing against paying for something they see as “cosmetic.” Most people with vitiligo will tell you that what vitiligo can do to your self-confidence and emotional health is not simply “cosmetic.”
I remember being about 3 years into having vitiligo, getting ready to go out to a movie and slipping into a skirt, while thinking “I need to wear this as much as I can because it’s probably my last summer to have nice legs.” It was a defeated thought mixed with a little anger and self-pity. Resentful. Not healthy.
I don’t know exactly when I started “evolving” towards self-acceptance.
Sometimes people or so called social norms keep us wrapped up in what is supposed to be “normal.”
For me, little things started happening. I found online support groups on Facebook. I volunteered to write about vitiligo. And, I realized that people were becoming more tolerant of “different.”
One example of feeling more accepted happened while I was at a soccer game. A teenage girl walked up to me and said, “Is that vitiligo?” When I cautiously said yes, she said, “That’s so cool! My cousin has it, too!” Privately, I thought this teenage girl was pretty cool herself for speaking up in such a positive way.
A combination of vanilla and chocolate
Later that summer, a child asked me what was “wrong” with my arms. I grinned and gave a simple explanation of vitiligo. I concluded with “and that’s why I’m a combination of chocolate and vanilla!” She giggled and I felt like a boss.
Fast forward another year, and I’m going through a divorce. If you’ve gone through divorce, you may know the drill: Reading self-help books, seeing a counselor to deal with anger, hurt and betrayal. Praying a lot, because suddenly you need God more than ever. Listening to positive music, calling your BFF at all hours of the night. Posting all your activities on social media so the whole world, especially your ex, knows everything is just peachy.
And then it happened.
One day, in addition to all my other fun issues, I prayed for healing of my vitiligo and — just stopped.
Suddenly, I found myself telling God He could heal it if He wanted but it was okay if He didn’t. It sort of came out of nowhere. It was a moment of truth: If someone were to offer me a cure for my vitiligo, I wasn’t sure that I really wanted it to be cured!
It’s ME. It’s not who I am and it’s not my identity. But, it’s me. And if it were to disappear on its own overnight, I would still be WHO I AM because it was a part of my life. And another strange thought: It occurred to me I might actually MISS it if it disappeared! When I first “got vitiligo” – that would never have crossed my mind!
Turns out, it has made me a better person.
And I wouldn’t change that.