Vitiligo: Totally Raw Rob
I am not here for a pity party or for you to tell me I am strong and brave. This post is an informational post about a disease I have had since I was two years old. I am not insecure about my condition and I am not sad that I have something on my skin that many other people do not have; If anything, I appreciate it.
Here are some facts you might want to know about Vitiligo:
Vitiligo is a disease that occurs when melanin dies or stops functioning in the skin. Melanin and pigments are the two main factors in skin that give it its color and tone. In the grand scheme of things, once the melanin decides to stop working it results in white patchy blotches due to the loss of skin color. The rate and speed of the disease is unpredictable to size, movement, or region of the body. There is no true way to stop the growth of vitiligo or gain it back.
There are different forms of vitiligo: generalized vitiligo (many parts of the body), segmental vitiligo (one side of the body), and localized vitiligo (only a few areas of the body). In 2000 I was diagnosed with generalized vitiligo; It appeared on my eyelids, mouth, arms, hands, armpits, legs, feet, and a few other areas. To learn more about Vitiligo, read about it here.
As I said, my vitiligo appeared when I was a toddler. My parents didn’t know what it was and like any parent they were very concerned (they thought I was dying…).
Just like any kid who is different from the crowd, I got a lot of attention for having different skin from the others, and not always positive attention. I would say that I was harassed and teased about my skin. I was called names such as “cow, Dalmatian, Giraffe.” For someone not having a great memory, I remember a singular experience v i v i d l y; In elementary school it was class picture day. I got to the stool to sit on, waiting for the photographer to take a simple picture of my face. As a minute passes she prepares herself to shoot. As she looks into the lens, she stops. She leans up and says “can you wipe the milk from around your mouth.” My teacher looked horrified and notified her about my skin. Then the photographer looked horrified like she ran over a kitten; I was more like:
The bizarre thing about this whole experience of having vitiligo was that I never felt like I was bullied. In order to be bullied I feel as though that you have to give into the bully and actually care; I never did. To this day you can ask my family if I ever came home upset about being different and the answer will simply be “no.” By this time in my life I had lived everyday with the disease. To be honest, I never knew there was something off about my skin until people I didn’t know made it a fact to let me know (aka kids in school). Therefore, when immature children would try to make fun of me in school (key word try) it wouldn’t work; I was already so comfortable with my skin and it was confusing to me why they weren’t.
As the years went on I became overweight. Being overweight was something that I was insecure about and something that I wasn’t comfortable with. With the mix of harassment due to skin and bullying because I was chubby I had trouble making friends. Middle school came around and I grew ten inches in two years, WOO! I thinned out and became tall and lanky. Everything seemed to be back to normal; I gained my once had confidence back and had plenty of friends.
Every year we would ask my pediatrician if there were any new updates to treat my disease, but there was nothing we hadn’t tried before. One year in high school the same conversation about vitiligo came about by the doctor and I stopped him. I let him know that I didn’t want to hear that he didn’t have a cure and I also didn’t care if he did.
It took me a while to understand this, but it is OK to be different. I learned that I was born to stand out (as cliche as that sounds) and as much of an attention seeker I am, I am definitely the right person for owning this disease. And let me tell you, I own it. I embrace every quality of my condition and I make sure that if my biology wants to shine, then so be it. In addition to my skin I challenge the status quo in every aspect of life; the way I dress, the way I do my hair, my presence on social media platforms, and my personality.
A few years back I did a research paper on vitiligo and the ratio of people with the disease compared to people without it was 1:1,000,000. One and a million? I’ll take it. Now the disease is becoming more common, maybe because people know what it is and it is being recognized, and the ratio has grown to over five million people having vitiligo.
With the statistics growing, so is the community. We have people all over the world with the lights flashing in their faces representing our community as ambassadors. Shout out to the late Michael Jackson, Winnie Harlow, Jon Hamm, Steve Martin, Joe Rogan, and so many more.
There is no true cure for vitiligo and there is no telling if it will ever go away. I have grown new spots and some of my melanin has reactivated to blend in with the rest of my tan skin. Vitiligo affects hair follicles as well; Hairs in my beard and knees have turned white. No, my white spots do not get tanned which is why they stand out in the summer. If you have any questions to ask about my beloved vitiligo comment down below OR just ask in person; I take it as a huge compliment when people are interested in learning more about the disease instead of assuming. I am very open to curiosity.
If you were just diagnosed with vitiligo then WELCOME, I am happy you are here. If you are willing, I would love to hear your story. Please send me a message through my contact page and let’s get in touch!
The Pigment Painter
The images I included at the top (the first image of my hands crossing over and the watercolor digital art photo)were created by the very talented Pigment Painter, Lauren. Lauren is one of the first people I have spoken to that shares our disease. At the same time, we both have similar and very different stories involving vitiligo. Lauren began making these watercolor images because she enjoyed it. Once she started doing it for other people it took off and began a revolution (in my opinion). Thank you Lauren for taking the time out of your day to create something as cool as the image you presented. To look at more of Lauren’s work through her social media platforms click here for:
Veraciously Valiantly Vibrantly Victoriously
recreated from post on 2/27/19, itsprobablyrob.blogspot.com