Maybe I Am the Normal One

Living with neurofibromatosis often feels like standing in a world where everyone else received instructions on how to belong—and somehow, mine were missing.

People stare. Some quickly look away when I notice, while others continue looking as if my body is something they need to understand. They see the tumors, the changes in my skin, or whatever makes me appear different that day. What they don’t see is the person inside this body—the woman, wife, mother, grandmother, teacher, friend, and fighter who has spent a lifetime learning how to live with something she never asked for.

I know that many people stare because they don’t understand neurofibromatosis. But understanding the reason doesn’t always make it hurt less.

As I get older, my NF symptoms are becoming more noticeable. My body is changing, and sometimes it feels as though neurofibromatosis is demanding more space in my life. With every new symptom comes another explanation, another uncomfortable conversation, and another moment when I must decide how much of my personal story I want to share.

Sometimes I am happy to educate people. Awareness matters, and I want others with NF to feel seen and understood. But sometimes I am simply tired.

I am tired of explaining.

I am tired of being stared at.

I am tired of feeling as though I must make other people comfortable with my appearance.

I am tired of being expected to turn every painful experience into an inspirational lesson.

I am thriving with neurofibromatosis—but sometimes, I don’t want to have to thrive. Sometimes I don’t want to be brave, positive, or strong. Sometimes I want to put down the weight of resilience and admit that this is hard.

Sometimes I just want to be normal.

I understand why people with NF hide. I understand the fear of being seen, the torment of feeling different, and the exhaustion that comes from wondering what others are thinking. I understand why someone might avoid photographs, mirrors, social situations, or new relationships. When the world repeatedly reminds you that you look different, hiding can begin to feel safer than living fully.

But hiding also becomes its own kind of prison.

So I keep showing up.

I show up even when I feel uncomfortable. I smile even when I notice the stares. I speak about NF even when I wish I didn’t have to. I remind myself that my body is not something shameful and that another person’s judgment does not determine my worth.

Still, there are days when strength feels less like a gift and more like a responsibility I never volunteered for. There are days when I don’t want to teach, explain, inspire, or advocate. I simply want to exist without being examined.

And then another thought enters my mind: Maybe I am the normal one.

Maybe there is nothing abnormal about having a body that carries a story. Maybe there is nothing strange about scars, tumors, pain, fear, or change. Human bodies were never meant to be identical or flawless.

Maybe the real problem is a world that has such a narrow definition of beauty that it treats visible differences as something frightening. Maybe the problem is not my appearance, but the inability of some people to look beyond it. Maybe what isn’t “normal” is staring at someone, judging them, or making them feel as if they don’t belong.

I belong here.

People with neurofibromatosis belong in every room, every photograph, every workplace, every relationship, and every beautiful part of life. We should not have to shrink ourselves to make others comfortable. We should not have to hide because the world has not yet learned how to respond to differences with kindness.

THRIVING with Neurofibromatosis does not mean I am happy every day. It does not mean I have conquered every insecurity or made peace with every new symptom. Thriving means I continue to live honestly, even on the days when I am tired. It means allowing myself to feel sadness, anger, fear, and frustration without believing those feelings make me weak.

I am strong—but I am also human.

I am brave—but I am also exhausted.

I am thriving—but sometimes I need permission to simply survive.

Neurofibromatosis is part of my story, but it is not the measure of my beauty, my purpose, or my value. I may never stop noticing the stares. I may never stop wishing, at times, that my life and body could be different. But I will keep reminding myself that I am not the problem.

Perhaps I never needed to become “normal.”

Perhaps the world simply needs to become kinder.