Protect yourself! If you think you’ve been targeted by a scam, click here to get information and assistance from the AARP Fraud Watch Network Helpline!
Sisters Site Logo.svg
Oh no!
It looks like you aren't logged in to the Sisters community. Log in to get the best user experience, save your favorite articles and quotes, and follow our authors.
Don't have an Online Account? Subscribe here

I Am More Than My Skin Color

When I was diagnosed with vitiligo, I was devastated, scared and then guarded. But then something big happened, and I began learning to love my skin.

Comment Icon
image_of_TonjaJohnson_Tonja Johnson 4_1440x560.jpg
Ginger Williams Photography
Comment Icon

It was 2011, when I was 41, that I first noticed a tiny white spot on my leg. I remember showing it to my mother who said, “Oh that’s just an age spot; everyone gets age spots.” I thought to myself, Age spots? What are those?   

 Then a year later a few more “age spots” appeared on my arms, and by 2013, numerous “age spots” continued to appear on all my extremities. I became concerned about these white patches that were invading my skin — some large and some very small, like freckles.

Starting to feel uneasy, I made an appointment to see my dermatologist, who said, “This looks like vitiligo.” She couldn’t confirm the diagnosis, so she sent me to a specialist at the University of South Florida.   

 Vitiligo. I didn’t know how to pronounce it, let alone know what it was. I thought, God, what is this? What is happening in my body to cause such a thing to happen? 

 At my first appointment with the specialist, he placed my arm under a Wood’s lamp, a device that uses ultraviolet (UV) light to detect certain skin infections, irregularities and pigment disorders such as vitiligo.

When the specialist told me, “It’s vitiligo,” I was devastated. After some research, I learned that there is no cure for this autoimmune condition that causes a patchy loss of skin coloring. It felt like I had been given a death sentence for a crime I didn’t commit.   

 I also felt alone and emotionally detached because I didn’t know anyone personally with vitiligo. How would I explain it to my family, close friends and colleagues? How would I handle the questions they would ask? I had never seen anyone with vitiligo except Michael Jackson. I wondered how he emotionally dealt with the changes.

As my spots progressed on my body over time, I became guarded. People would often ask if I had been burned in a fire. Cashiers would drop my change on the counter or avoid handing me my bag, as if I were contagious. The stares, from children and adults, were the worst. I didn’t even feel comfortable walking through the mall, singing worship at my church, event planning or even enjoying travel.

 The day the first spots appeared on my face the war within began. The white patches looked like confetti. I would witness changes to my face every day and I felt like pieces of me were being taken away bit by bit. Over the next several years I spent a great deal of money on makeup to cover the white patches. I was battling with my new identity, looking in the mirror and feeling like a monster. I found myself scraping into my skin trying to get rid of the ugly spots that were taking over.  

 One day in 2015 stands out. I lay on the bathroom floor, contemplating suicide. I wanted to die so I wouldn’t have to deal with this awful disease that had not only ambushed the most noticeable part of my body, but also my motivation, my safety and my security. 

Then something happened. My faith in God stood up on the inside, and I decided I wanted to live! When I pulled myself together and got up off that floor, passion had ignited within me.

Since that day, I've been on a mission to live my life, embrace the skin I'm in and help others along the way. I decided to embrace my vitiligo diagnosis. And I founded Beautifully Unblemished Vitiligo Support Group, Inc., where I serve as support group leader and passionately empower people living with vitiligo to focus on keeping a positive body image, building self-esteem and loving the skin they are in.  

 Today, 80 percent of my body is covered in white patches. Before my vitiligo diagnosis, my self-esteem was low. I was always worried about my appearance, being overweight and my dark skin. So much of my identity and self-worth were tied to my exterior. It had felt like I was losing the skin that identifies me as a Black woman, and I was trying to attempt to figure out where I fit in and how society viewed me.

Now I know I am more than my skin color. I find worth and value inside of me. How I see myself as a Black woman is now tied to my culture, my upbringing and my family's history. Since my diagnosis, daily devotions, counseling and positive word affirmations have given me a newfound love for who I am and a level of confidence I didn’t have before.

I share my story because I stand in the strength of my husband who, from the beginning of this journey, supported me unconditionally, my daughter who is my rock, my sister who is so kindhearted and my high-spirited council of close friends. 

Today I can walk past the mirror and say, “Girl, you cute.” There is no more hiding behind makeup. Now I am living a life that looks good on the inside and outside.