The April 2022 Issue

Balinda Musti’s Winding Journey to Self-Acceptance With Vitiligo

By Lyn Atwiine | April 8, 2022

What do you do when the largest organ on your body behaves differently? For 26-year-old Mustafa Ibrahim Balinda, also known as Balinda Musti, it has been a long, tedious journey to self-acceptance. He has vitiligo, a skin disorder that presents with white areas (called macules or patches) that appear on the skin. The patches don’t hurt and are non-contagious.

The drawback, one Balinda has had a generous share of, is the stigma around it. “We don’t know how to treat people that are different,” he says. People with vitiligo often feel embarrassed or anxious about their skin, owing to the stares, unkind comments, and superstitious approach towards it. This, of course, leads to low self-esteem and depression. Globally, about 1% or so of the population has vitiligo.

Balinda chose to turn his life around though! Four years ago, the photographer and content creator made a decision to accept who he is, and whilst celebrating his uniqueness and beauty – his life has never been the same again.

For our April cover story, he shares his journey to self-acceptance, one he still considers a ‘work in progress’.

Childhood

My dream, as a child, was to be a renowned footballer and swimmer, but things changed at the age of 6. I developed a white patch in my armpit that I didn’t notice early. As soon as I did, I got concerned and alerted my parents. Their question was if there was pain or itching around it. There was none. They asked me to not take it seriously.

Over time, the patch got bigger spreading way beyond the armpit. Again, I got concerned and let my parents know. This time, they made an arrangement for me to see a specialist. Upon taking some tests, results showed that my skin cells were down and failing to produce colour. The specialist went on to explain that the skin disorder is called ‘Vitiligo’. He asked me to prepare to see even more patches. At that age, of course, I couldn’t comprehend many of these things.

I was immediately put on treatment. That day I left with medication to cover 2 weeks, after which I had to return for more. However, the medication was quite pricey for my parents. Besides, consultation fees to see the specialist staggered around Shs 50,000 per visit. It was pricey. That wasn’t all – as much as I took my medication as prescribed, the patches were still spreading like wildfire. As a child, this was even more disturbing to watch. I just got up one day and discontinued the medication.

School Times

In the start, because I was always clothed in a shirt, no one at school noticed. A few, who were close to me, would take notice of little patches on my neck and ask if I was okay. My answer was always that it was a disease that I was healing from.

At 13, I couldn’t hide the patches under my shirt anymore. They had spread all over my neck and hands. This threw me into a long state of anguish. Why was this happening to me? Why was I not looking like the other ‘normal’ kids? I asked, but there was no answer. I’d keep to myself; the trick was to stay indoors during the day, and step out at night. If I ever walked out during the day, I made sure to wear a jumper, gloves, and socks. It was so painful! Over time, the pain turned to evil, I was so angry. I couldn’t afford to watch my peers live normally as I drowned in anxiety, in S2 I dropped out of school.

Of course, my parents weren’t pleased by this decision. It was so sad for them, they were just as pained as I was during the whole experience. However, they didn’t pressurize me to go back but begged me to at least push on till S4. I couldn’t imagine more years at school living that way, my mind was made up – I was done with school.

I’m grateful that I had a few people in my circle, who understood what I was going through. These kept me sane. The rest was, for lack of a better word, nasty. People feared that I would spread ‘my disease’ to them or their children if, for example, I shared a cloth or got close to them. Did I know if it was contagious? No! I didn’t because I couldn’t muster any energy to learn about vitiligo. I was stressed and angry.

Fighting Back

At the depth of my conscience, I always had a feeling that it was temporary, and time would come when I’d be ‘normal’ again. Because of that, I jumped at every idea or advice about finding a cure. I once approached a ‘witch doctor ‘out of desperation. I was asked for money. I was asked to offer eggs of local chicken to the gods. I was asked for a unique clock. Once it didn’t work, I tried my luck with another witch doctor. But the patches never left my skin!

I was hoping for a miracle cure. Walking into a shrine is scary, but I braved it. Imagine walking into a small room with no light. Sometimes the witch doctor’s voice would turn become deep and unreal. They kept asking for more money to appease the gods, it got exhausting. In the end, I was crushed that it didn’t work. But of course, I didn’t relent. I resorted to herbal concoctions. These only made me sick; I lost appetite and vomited uncontrollably. That was when I made up my mind to stop. I wanted my brown skin back, but I wasn’t ready to lose my life while at it.

Acceptance

Four years ago, Mufti Menk was invited to Uganda for a lecture at Namboole stadium. Since it was free, my cousin convinced me to join him in attendance. I don’t even know how I mustered the courage to attend a public event, but I found myself there. We were lucky to get front seats where we could see him well. I don’t remember exactly what he said that moved me, because it was such a powerful lecture. It felt like he was speaking directly to me. I mumbled to myself, “I think now is the right time to accept who I am. I am different and it’s fine I’m done suffering.” That was it!

Mufti Menk’s message

Mufti Menk asked us to look at ourselves in the mirror. “If you can raise your hand, that means you can get yourself out of whatever challenge you are going through,” he said. I pictured all the homeless kids I had seen on my way to Namboole and realized that I had been so unfair to myself. When I got home, I had to run to the mirror, and indeed his message had hit home.

I immediately broke down into tears. I had lost almost three years of my life hiding and being angry, yet I had so much to be grateful for. I had lost friends. I had sunk myself into depression. I sat down and said, “This is me, whatever people say about it, I have to just trust in myself. I have one life to live.”

It wasn’t easy at first, I’d go out and stares from people would push me to run back home and cry. Thick skin never comes easy, but I built it. I chose to surround myself with positive people, and ignored negative comments.

Celebration

Around that time, I discovered TikTok and explored it. On the platform, I found people doing what they loved to do – dancing, singing, acting, etc. In celebration of who I am, I decided to create all my TikToks shirtless. I was overwhelmed by the support and positive reactions. This encouraged me to keep going. I now post a new TikTok every other day. This has been one of the silver linings; I get to celebrate myself and also create awareness around vitiligo. I have more than 88,000 followers on the app, who constantly flood my DM and comments with words of encouragement.

Check out his TikTok here: https://vm.tiktok.com/ZMLQejCBH/

@balindamusti #balinda_vitiligo #balinda_musti16 ♬ original sound – Nasheem🦋

Dating

My first girlfriend once asked me to explain why I had a white patch on my chest. My answer was that it was a small condition that would fizzle away later. I was worried she would leave me. She didn’t really buy my explanation and rationalised it as a birthmark. We later broke up.

I had other girlfriends along the way, most of whom were supportive, some, however, got negative advice from their friends, who would make them overly conscious about dating a guy like me. Such relationships never lasted, of course.

Now, I find it easy walking up to girls something that was nerve-wracking for me to do. When I got over that, I’m now fine.

Activism

Thanks to Tiktok, fashion photographer and designer Banji Bagwana once contacted me with an invitation to shoot pictures for Louis Magazine, a French publication. After a while, he put me in touch with Martin Senkubuge, a model and activist with vitiligo. He had put together a vitiligo awareness exhibition at Makerere University. That day I met other young people with the skin disorder. It was surreal just seeing myself in them and their stories. We planned to come together on the next exhibition; support and encourage people like us, and also sensitise Ugandans about the truths and myths around vitiligo. This plan didn’t come to fruition because shortly after, we were locked down. We, however, are planning to make it happen very soon. Away from that, I’m using every opportunity I get to enlighten the masses that vitiligo is not witchcraft, it’s not contagious, and we need to support and love everyone with it.

Photography

A friend introduced me to photography. I wasn’t interested at first, but he believed I had the creative edge to do it. It wasn’t until I received some money off it that I went all in. I practiced with a lot more passion, and have since shot many different things; from weddings to birthdays and some portraits. At the moment I don’t have my own equipment due to the high cost, so I simply hire whenever I need to. It’s an interesting journey though. Follow Balinda Photography here.

Challenges

When I stand in the sun for too long, my skin gets sunburnt. It gets itchy and can take up to 2 days to get back to normalcy. I’m always looked at differently. I cannot walk past a group of people and not hear a whisper or something. Many people are still ignorant about vitiligo, they believe it’s contagious. That makes hanging out in public challenging for me.

The Future

I’d like to continue empowering myself and others who have vitiligo. I’ve met so many people who I didn’t imagine I’d ever meet – they have supported me and have given me invaluable life advice. I’d like for a time to come when no one has to go through what I went through. When they can access all the knowledge and support I have now as early in their life as possible.

On the flip side, I wouldn’t mind growing Balinda Musti into a personal brand. I believe that would offer me more opportunities to offer support. If possible, I’d also love to do a bit of modeling. It’s funny how, now, some people are obsessed with my skin.

I also look forward to improving my photography craft.

Love yourself

You should love yourself. If you are proud of who you are, it won’t matter what you look like as long as you are happy. Love yourself even more because if you do, you’ll be able to love other people. We have so many angry people living among us – all they need is love!