VITILIGO
Joan Mbugua is a Kenyan model proudly thriving with vitiligo. Vitiligo is an autoimmune disorder that occurs when pigment cells that produce colour are destroyed. It affects 2 percent of the world’s population. At the age of 15 years, Joan noticed some changes on her skin. Little did she know how that moment would impact her life forever. She spoke to Woman Kenya Network about surviving with vitiligo and why she hopes that someday her skin will be invisible to the world.
The exclusive interview on Her Standards is here.
How do people react when you walk into a room?
People living with vitiligo command a lot of attention because we are different. When I walk into a room everyone stares, others point fingers and make comments such as, “angalieni huyo msichana (look at that girl).” Surprisingly, I don’t mind the attention, because this is who I am. It used to bother me back in the day but now I have embraced myself and what people say is the least of my concerns.
How old were you when you noticed the first white spot?
I was 15-years-old, in Form Two and I had just joined high school. I noticed tiny whitish spots on my face and lips. The first person I informed was my mum and family. The first reaction was to get a medical opinion and soon we started visiting hospitals, many hospitals hoping to get a medical explanation which was not forthcoming.
I have been to many hospitals, about ten hospitals in search of a permanent solution but so far nothing seems to work. Even with the medication, sometimes the spots increase which is so frustrating. Now I’ve lived with vitiligo for six years. My former classmates or people who knew me before, those we went to primary school with, can barely recognize me, and it’s okay.
Do you sometimes try to hide the spots?
I tried to conceal the spots using makeup but it got to a point when I couldn’t hide them anymore; after they started spreading to visible parts of the body such as my hands. Currently, the pigmentation is all over my body. I am not using any medication and I don’t intend to subject my body to that struggle again. I love myself just the way I am. I still wear makeup to slay and not to hide. I love makeup and did cover my face until covid-19 pandemic happened and we started masking up, then it didn’t make sense to glam the face.
Certain people have said very mean things about vitiligo. Some even associate it with witchcraft …
There are too many myths and misconceptions about vitiligo. Let me put the record straight. First of all, vitiligo is not a painful skin condition; well unless survivors are exposed to long hours in the sun. In that case, the skin is affected, it turns red, pink or it may swell or even peel.
Secondly, vitiligo is not contagious, neither is it associated with witchcraft. And no, it’s not a curse. Vitiligo can affect anyone at any time. People living with vitiligo can lead normal lives and do what normal people do including getting tattoos. I don’t have one yet, but it is definitely on the bucket list.
Have you ever felt discriminated against because of your skin?
Not directly, but the fact of the matter is people who are like me are treated differently. Take for instance my life as a model, it is difficult to get gigs compared to the rest who are considered normal.
When we do shoots, we wear dull outfits and Ankara doesn’t go well with vitiligo.
What would you tell them?
See beyond the skin; I am more than the vitiligo on my skin. Models with skin conditions work just as hard as the rest and deserve equal opportunity.
And what’s that one comment that really ticks you off?
Getting unsolicited advice. I have been told several times… go try this and that. While I appreciate everyone’s concern, I’m in love with who I am now. Just stop.
On a lighter note, let’s talk about dating for people living with vitiligo.
Honestly speaking, many people struggle to date men or women like me, although my experience has not been that bad. I was in a relationship and we broke up. Now I am single. However, my greatest fear is facing rejection and being judged by the family of my potential partner who may not be judgemental at all; but his family might view me differently.
What would you tell those who are reading your story today?
I am not my skin. Date me for who I am and even though my skin stands out, my heart is responsible for loving and having meaningful relationships. Learn me, know my heart and just forget about my skin. Maybe someday it may get better or never.
So, a little birdie told us that you and America’s Next Top Model (also living with Vitiligo) Winnie Harlow , are bffs?
Winnie Harlow: [PHOTO: COURTESY]
Well, one time, I commented on her Instagram post and she inboxed me, to find out how I am living with Vitiligo. It was so humbling.
Most rewarding thing about opening up?
I have been a video vixen, notably in Otile Brown’s sont , ‘Just the way you are’
Moreover, I wouldn’t get TV interviews, if it wasn’t for my Vitiligo. Besides, the one and only Winnie Harlow noticed me.
What does tomorrow hold for Joan Mbugua?
I am so keen on creating awareness about vitiligo. Truth is anyone can develop vitiligo and having correct information is key to thriving with this condition. People like talking and they’ll never stop. As a young person, all you have to do is love yourself, accept yourself for who you are. Just find a way to get used to your skin, the world will adjust.
