‘What’s that on your neck?’ They thought it was a disease. ‘Are you contagious?’: Man with Neurofibromatosis Type 1 talks overcoming bullying

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“I remember growing up as a child feeling like I was normal like everyone else. I wasn’t looked at stared at or pointed at for looking different. But then I turned 6 and a spot had occurred on me and from there, something began to grow on me. Not having a clue as to what is about to unfold, my mom and soon-to-be adoptive dad took me to the doctors. But it was like I was in a group of other kids who looked and had differences like me. They had been told I have a rare condition that is called Neurofibromatosis Type 1. I am sure my mom panicked like any parent. But, my now-father calmed my mom down, knowing everything was going to be okay.

Courtesy of Matt Bowes

What scared me most is starting to have something I am confused about growing on me and possibly turning into something very large. I didn’t think anything of this because, well, I was just a confused boy, not knowing what a condition or disease is. So, I shrugged it off like any kid. I was ready to live my life to the fullest. After we left, my parents then began to keep more of an eye on me seeing if and what things would begin to change. Seeing this birthmark on my neck grow larger over time, I didn’t get to be that popular cool kid in class or on the playground.

I was definitely looked at differently and was always asked, ‘What is that on your neck?’ The only thing I could respond with was, ‘It’s a birthmark.’ They thought otherwise. It was either called a burn, a hickey, a disease. I remember being asked a lot by kids if I was contagious and that, for sure, broke me down a lot.

Courtesy of Matt Bowes

There were also a lot of highs. I wasn’t always bullied as a kid. I pushed back with comebacks and I had my backup friends who defended me. My brother was a HUGE role model in being my protector and friend. He wouldn’t let people make fun, nor would he not let me go with him because I have a different look. And my friends? Well, they definitely made me feel like the same. And they would also make sure I wasn’t picked on. I always felt like I had a purpose growing up. I wanted to be in the spotlight, but that was because I pretended I was a famous baseball player and I was always winning. You have to feel like a winner even when your cards are dealt differently. So, since I am not in the Majors, I chose to show kids older than me to not give up just because they look different. And that was the crowd I hung around because I was inspired by them as they were inspired by me.

Courtesy of Matt Bowes

I can remember so many times I had to go to the doctor and I absolutely dreaded it. I had to do a lot of MRI scans and who truly likes sitting still in a huge tanker? I passed out every chance I could. I am sure sometimes I cried because it was loud and scary. But then came my teenage years when I was able to have surgery. Let me tell you that when that day happened, I was filled with excitement. I went home, right to the bathroom, and imagined a birthmark completely gone. This birthmark I live with has grown so big and I felt defeated.

Courtesy of Matt Bowes

I was at my wit’s end with the bullying and the torment and to be honest, I wanted to end it on so many occasions because I felt like not even sympathy was working with my family, friends, nothing! But I knew there still held purpose. If I quit my future for kids, being an uncle one day wouldn’t happen. I would disappoint and not fix the problem. So, when the news came, I knew there was hope.

I can remember always feeling out of place being I was always living a single life. Thinking, ‘I am never going to find this woman I want. I won’t find happiness.’ Well, a lot of it I have noticed now as an adult. I wasn’t different; I just kept meeting and wanting the ones who were only about how someone looks. I guess that’s why I would judge others myself and then I would feel like I needed to find the better one. Judgment really is an evil word. And when I do find the right one, I knew it was meant to be all along and I don’t need to regret or feel bad about my past of not having many relationships.

Courtesy of Matt Bowes

As I grew up into my twenties, I felt a lot more confident but was still struggling with life. I still wasn’t finding my place or purpose. But then came new friends who would show me I can achieve anything. I embarked on a journey to get as fit as I could, inspiring MY community that deals with Neurofibromatosis. I didn’t want to keep using my NF as an excuse to be lazy or not do anything with myself. I wanted to set the bar as high as I could. And when I achieved these goals, I took on a lot of followers through social media, wanting me to never give up and that right there was my fuel. I ignored the haters and nay say-ers who wanted me to quit. Because that isn’t fuel. That, to me, was junk food.

Courtesy of Matt Bowes

When I began to get bored with the fitness of weight lifting, I didn’t give up the inspiration. I started achieving hiking up mountains that are 14,000 feet up. And as those are challenging. I wanted my message of achieving anything you want doesn’t always have to be what others like. It should be what you’re great at doing.

Courtesy of Matt Bowes

When it came to putting myself out there on social media, I didn’t expect all the support and of course, the negative comments. It opened a door to be on a TV show I stumbled on. It was so unreal to realize I was going to be on TLC the Pimple Popper. All I was doing was wanting to bring happiness to people’s lives and awareness we with NF are not a disease were normal people. But, let me tell you the crew and Dr. Saundra Lee treated me like I was a human, listening to my story and background. She took off painful spots on me and I can truly say I am forever grateful.

I know our future is bright. Just because you look different or have limited abilities does not mean you can give up. You have to rise up and find your worth. And when you have time to sit and think. Always search for the greater you.”

Courtesy of Matt Bowes

This story was submitted to Love What Matters by Matt Bowes. You can follow their journey on Instagram and TikTok. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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