I was diagnosed with Neurofibromatosis Type 1 (NF1) when I was around 18 months old. From as early as I can remember, my life involved hospitals, appointments, checks and more checks. I remember one of my first operations to have a tumour removed — I was terrified. Everything felt big and overwhelming. Now, years later, having tumours removed almost feels like second nature. It’s strange how something so scary becomes something you just learn to get through.
Growing up with NF1 wasn’t easy. Looking “different” caused me to be bullied, called names, and constantly made to feel like I didn’t fit in. Those moments stay with you. They chipped away at my confidence and made me want to hide myself away. I had never met anyone else with NF1, never seen anyone who looked like me, and no one around me really understood the condition. That loneliness — that feeling of being the only one — is something I still remember clearly.
As I got older, instead of getting more confident, I actually became less sure of myself. I’d pull my sleeves down, adjust my top around my neck, and do anything I could to cover the parts of me people stared at. Even now, after years of dealing with looks and comments, that instinct is still there. A second skin, almost.
But then I became a parent, and everything changed. Having my children gave me a kind of strength I didn’t know I had. I didn’t want them to see me hiding or apologising for how I look. I wanted them to learn confidence, to know that differences are normal and nothing to be ashamed of. They gave me a new kind of energy, one that pushes me to walk a little taller, even on days when I still feel that old self-doubt.
My story hasn’t been simple, but it’s mine, and sharing it is one of the ways I hope to help others feel seen, understood, and less isolated.
I’ve had a journey full of highs and lows. From fear and confusion as a child, to loneliness as a teenager, to slowly finding courage as an adult. I’ve learned that NF1 is a part of me, but it isn’t the whole of me. My visible difference has shaped the way I experience the world, but it has also taught me resilience, empathy, and strength.
I’m sharing my story because growing up, I would have loved to hear from someone who understood what NF1 feels like — the comments, the stares, the insecurities, the appointments, the operations, the questions from strangers. I want anyone reading this who has a visible difference, NF1 or anything else, to know they’re not alone. The world can be unkind sometimes, but you deserve kindness, understanding and space to be exactly who you are.
I’m still learning, still growing, and still working on my confidence every day. I might have moments where I pull my sleeves down without thinking, but I’m proud of how far I’ve come. My story hasn’t been simple, but it’s mine, and sharing it is one of the ways I hope to help others feel seen, understood, and less isolated.
If you’re reading this and you’re at the start of your own journey, or somewhere in the middle, please know this: you are not alone, your feelings are valid, and your story matters.
