‘What are YOU looking at?!’ Why would they say those things to me? I became someone I didn’t recognize.’: Woman with Vitiligo finds self-love, ‘I no longer walk in fear’

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“My name is Iomikoe Johnson and here is my Vitiligo story. I was diagnosed with Vitiligo at the age of 25 and boy, did it change my life forever. At first, I thought maybe I had burned myself and then later I end up finding out in fact, I had a skin condition. Vitiligo is an autoimmune disorder that causes white patches to form upon the skin because the cells make up the color of your skin. When I was diagnosed by my dermatologist and my doctor told me I had this skin condition I was terrified. Why? Well, he showed me pictures of people with Vitiligo and it freaked me out: their entire bodies were covered in white patches, and knowing I was a dark skin black woman, I knew it would deeply alter my body and the way I looked. I knew people would notice because I was so dark.

Initially, I asked him if I had some form of skin cancer and he laughed, which really pissed me off because I was serious. The doctor then said to me: ‘No, it only affects your skin color and nothing else.’ To me, however, was such a big deal because as a kid I was teased for having dark skin and I knew people would be freaked out when they saw me. I thought about what would my family say. I thought: ‘How would it make my kids feel to see me turn into a monster? Would their friends or the people at their school tease them if they saw me look like that?’ So to avoid it all, I decided to cover my Vitiligo. It took me 1 hr and 45 mins to do my makeup everyday.

Courtesy of Iomikoe Johnson

Soon the situation got so bad, I couldn’t hide my condition anymore and there came the stares and the rude comments. People called me a cow, a Dalmatian, a spotted n-word… They didn’t want to take money out of my hands. I got asked things like if I had mud or paint on my face, or if I had the ‘Michael Jackson disease.’ It all took a toll on me and my mental health and I became very angry and depressed. So angry, I would snap at people for staring at me; I would say, ‘What the hell are you looking at?!’ I became someone I didn’t recognize anymore.

Before Vitiligo, I was the life of the party. I was fun to be around: always cracking jokes, always laughing… but this skin condition turned me into someone I hated being. I remember having a really bad day at work because I tried to help a customer and he turned around and told me, ‘Holy Shit, you scared me! What’s wrong with your face? Is it contagious?’ I remember I got so mad, like, why the hell would you say that to someone? I’m human, it was mean and it broke me down. I remember getting off work and crying all the way to my parents’ house. I told my mother what had happened and she hugged me and cried with me; she said, ‘Come on, let’s talk.’

Courtesy of Iomikoe Johnson

She told me not to believe those people, and I was beautiful. ‘People are just evil,’ she told me. ‘You can’t help it, you have this condition, so you are gonna have to learn to live with it. Understand you’re not what they call you but what you answer to.’ My mother told me to make peace with this skin condition because there was no cure, and if I didn’t, I would live in misery all my life. It was not a life she wanted me to live. She wanted me to find my way back to the person I was before this condition started. I then told her: ‘Such a person is dead.’ I was that person now and I hated myself. She told me: ‘Don’t you ever say that again.’ She told me it was not hate; I was speaking with fear. She told me God had given me this condition for a reason, and I needed to find my purpose and the reason I was given this condition. My mother told me I wasn’t the only one in the world who had this condition and I wasn’t going to be the last one. She told me maybe by getting over my fear, I could help others. But I didn’t know others.

One day as I was scrolling on Facebook, I saw a beautiful young lady by the name of Winnie Harlow, who shared the same skin condition as me. She was a model. I read her story and it inspired me to embrace my skin the way it was. My now fiancé told me the same thing; I was in fact beautiful but couldn’t see it because I wasn’t looking at myself through God’s eyes, but through eyes of fear. I had to overcome my fears of people’s words. So I began a self-love journey with myself and my skin condition.

Courtesy of Iomikoe Johnson

I would write myself inspirational quotes in the mirror every day until I started to believe them. Every day my confidence got stronger and stronger until I decided to stop covering up my skin condition. Someone then contacted me to be in a fashion show; it was the perfect way for me to overcome my fears. So I did it, and when I tell you it was the most uplifting and fulfilling moment of my life… Outside my dressing room was a photographer, and he told me: ‘I don’t know if you know how beautiful you are, let me say.’ He booked me a shoot and when I saw the pictures I was astonished by just how beautiful my skin really was for the first time. I saw myself through God’s eyes. And now I speak on self-love and empower people all around the world to embrace themselves the way God created them.

I still get rude things said to me on social media. They call me half black, half-monkey, a cow. They tell me ‘my n-word is loading.’ However, I don’t let it phase me because I know I’m not what they call me, but what I answer to. I am beautiful and smart, and I’m not here for them; I am here for the people I am supposed to inspire. I am here to teach others what God taught me: to never live in fear. God gave me a gift and purpose and I’m spending my life following down the path he’s guiding me down, and the people who love me are proud of the woman I’ve become. I want women and girls to know these people did not give you your joy, and they can’t take it away. Don’t walk in fear: walk in love. Follow your purpose and God will lead you down paths you never thought you could go; I’m a living testimony to that.”

Courtesy of Iomikoe Johnson


Courtesy of Iomikoe Johnson

This story was submitted to  Love What Matters  by Iomikoe Johnson. You can follow her journey on her Instagram.  Submit your own story  hereand be sure to  subscribe to our free email newsletter for our best stories, and  YouTube for our best videos.

Read more inspiring stories like this:

‘Why me?’ The words echoed in my head, ‘There is no cure…’ I reached to get my makeup and it wasn’t there. It was a nightmare that wouldn’t end.’: Man finally accepts vitiligo, ‘What I have is a blessing’

‘You’re born with it. There’s no way I have it.’ It spread like wildfire, right on my face.’ Woman with vitiligo learns to feel beautiful regardless, ‘Love yourself through your struggles’

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