Over the weekend I joined a childhood friend Tray and his family and friends in support of World Vitiligo Day. I didn’t know it was a thing but it is; June 25th to be exact. They rock the color of purple and this means next year you have no excuse not to support and educate.
Vitiligois a disorder in which white patches of skin appear on different parts of the body. This happens because the cells that make pigment in the skin are destroyed. These cells are called melanocytes.
Tray developed Vitiligo in his late 20’s, I would see the pictures his wife (also a childhood friend) would post on social media. The first time I noticed I said “oh wow, I had no idea” and I kept on scrolling and probably mentioned it to my BFF. Fast forward to last week and his wife is posting about Tray doing a walk, nothing “official” but just wanted folks to come out and do a walk in support of him. I immediately said I was in, plus I’m still trying to win step wars so this was dual purpose for me. Although I was in I still didn’t really know anything about Vitiligo other then your skin loses its natural melanin and you look a bit different. This was going to be a teachable moment and I’m all about educating the masses so here we are; I have all the questions. I was honored that he humored me and my curiosity and shared his story…
When did you discover your first spot? I noticed my first spot about 12 years ago. Where was it? My first spot was around my eyes.
Did you go to the doctors for an official diagnosis? It took a while for me to go to the doctor, I realized that it wasn’t going away so I decided to go. That was my first time hearing about Vitiligo. Hearing a doctor tell you that there is a good chance that you will possibly start developing white patches spots all over my body is hard to take. The hardest part is the fact that doctors are not sure if it will go away or not, how bad it will get, or if any treatment for it will actually work. Some doctors can be insensitive to the feeling of the person hearing this type of news. With it not being a life treating disease they would come off with telling you it’s just skin so you will be okay; this is terrible to say as a doctor. It’s not going to kill you but depending on the person it can take a toll on you mentally.
How has Vitiligo changed/affected you for the good or bad? At the beginning it did not have any serious effects on me; I started using some steroid creams prescribed by the doctor. The little spots on my face got the pigment back because of the cream and that made me think I was in the clear at that time. Then it came back, kept coming and still coming. Most days are good but sometimes I do have days when it still bothers me because of the stares and the comments.
Have you tried any treatments? Yes, there are different types of treatment options but you are really just taking a chance on them. There are different types of creams/ointments that can be prescribed by a dermatologist. There are UV light therapy treatments in which light is used to try to rejuvenate the skin pigment cells. There are also all types of different items you can find on the Internet that claims to be able to help your skin repigment. I’ve tried the creams/ointments and the light therapy. Most of the time these treatments don’t work but if you are willing to try them and hope for the best there’s absolutely nothing wrong with that. I am currently doing light therapy but it’s more to try to slow things down; I know and understand that I will never look the same. You can say that its kind of hypocritical to say embrace your beautiful imperfections and still try the treatments but in my eyes excepting a major change is difficult; so if you want to try to slow the depigmentation down its worth a try. Just keep in mind that it’s a good chance that it may not work.
How did you explain it to the kids? Honestly, I didn’t really have to explain it to them until they started school, their classmates would ask them what is wrong with your dad’s skin. Then I just told them that I have a disease that causes my skin to change.
Do you get strange looks?How do you handle them? OH YEAH, THE LOOKS are all the time. To be honest most of the time I handle it well because people don’t know how to react when they don’t understand or know what they are seeing. There are days when I just don’t handle it well so I am affected by it. Then my days are kind of off but I have to always remember and remind myself that our awesomeness comes in so many different ways so I embrace my beautiful imperfections.
Here are some of my encounters and my internal thoughts, It’s called Vitiligo!
– To the old lady that walked up to me and said: “Poor thing what’s wrong it’s going to be OK because God is good”. IT’S CALLED VITILIGO
– The people I haven’t seen is a long time who say “Oh, didn’t know you got burned in a fire”. I didn’t. IT’S CALLED VITILIGO
– To the kid who cried in fear at first glance as if I was the boogie monster in their nightmares coming to steal them. IT’S CALLED VITILIGO
– To the kid that asked why do I look weird. Different doesn’t mean weird it just means my awesomeness is different than yours. Thank you to the parents that checked their child. IT’S CALLED VITILIGO
– To the folks that just can’t stop staring. IT’S CALLED VITILIGO
– To the ones who hesitate to shake my hand. IT’S CALLED VITILIGO and it’s not contagious.
Other than a visual change how does it change your life and your routine? Plain and simple it makes you really sit back and think that there is so much more to you than what you see in the mirror what anyone else sees when they look at you.
Did you have to change your grooming routine or products? The only thing I really try to be mindful of is making sure I use sunscreen as much as I can, especially with running outside. Besides that, there is no change in my routine.
What advice/encouragement would you give someone who just found their first spot? You will have people say that it’s just skin so you will be okay, it is easy for them to say that because it’s not their skin. I would tell them to find someone close to you that you can express your feelings about your changes. Try to find it in yourself to embrace your beautiful imperfections. You being different is just another way of you being AWESOME! So be YOU and be AWESOME!
Tray’s wife Zarinah is second from the left in purple.
I have to say my wife has been there from the beginning to present day and has been there with open arms through it all. Even when I feel this is a me issue and don’t share my thoughts I know that she is there for me and that will never change. She is no doubt my someone and I truly love her for that. I have to say thank you, my close family and friends, for never looking at me differently or treated me different. Thank you for that, it means more than you will ever know.
A big thanks and lots of love to Tray and his wife Zarinah for helping me write this post. I’m so thankful that Tray was open to sharing his truth, that isn’t any easy thing to do. In a society that puts so much focus on appearance, I’m sure it makes it even harder for someone with Vitiligo.
The next time you see someone in the street with Vitiligo, speak, shake their hand, give them a compliment. Let them know it’s okay to be different, and that you appreciate their awesomeness.
Do you or someone you know have Vitiligo? Are you guilty of looking harder at someone that looks different? Chat with me in the comments below or FB, IG and Twitter.