Thriving at the ER

Listening to My Body

I recently went to the ER after experiencing heart fluttering and shortness of breath. I was scared. My mom passed away from a heart attack, my husband had one last year, and my brother had one in January. With that history on my mind, I knew I needed to take these symptoms seriously.

At the ER, they did an EKG and a chest X-ray. I’m incredibly thankful that it wasn’t a heart attack, blood clot, or stroke.

The experience reminded me that thriving doesn’t mean ignoring fear or pushing through symptoms. Sometimes, it means listening to your body and taking care of yourself. If something feels wrong, please get it checked. You deserve that care and peace of mind.

I Just Want To Feel Beautiful

 

 

THRIVING with Neurofibromatosis: Sometimes, I Just Want to Feel Beautiful. 💜

There are days when I look in the mirror and barely recognize the woman staring back at me.

Neurofibromatosis is changing my body, and no matter how hard I try to embrace those changes, sometimes I just can't.

The tumors keep coming. One after another. And with each new one, I feel like I'm losing another little piece of myself.

The physical pain is exhausting, but the emotional pain? That's something entirely different.

I see the stares. I notice the uncomfortable glances. I feel the judgment, even when no words are spoken.

And sometimes, I feel ugly.

There. I said it.

Sometimes I hate putting on makeup because it doesn't hide what I wish it could. Sometimes I envy women who seem effortlessly beautiful. Women who can walk into a room without wondering who's staring.

I long for that kind of normal.

And yes, sometimes I get angry. Life feels unfair. I didn't ask for this. I didn't choose a body that continues to change in ways I cannot control.

But here's the thing about THRIVING.

Thriving doesn't mean I have to love every part of this journey. It doesn't mean I have to smile through every painful moment or pretend I'm always strong.

I'm human. I'm allowed to hurt. I'm allowed to grieve the changes in my body.

I'm trying to find beauty in myself beyond what the mirror reflects. Some days, that's incredibly difficult.

I don't need pity. I just wish people understood.

I'm still me. Still worthy. Still beautiful in ways I'm learning to recognize.

And even on the days I don't feel it, I'm still trying.

Because sometimes, THRIVING simply means refusing to give up on yourself. 💜

— Thriving with Neurofibromatosis

Five Things I Wish Doctors Knew About NF

 

Five Things I Wish Doctors Knew About Neurofibromatosis

Living with neurofibromatosis means learning how to navigate a body that can be unpredictable. It also means spending far too much time explaining a condition that many medical professionals don't fully understand.

I know doctors can't possibly know everything about every disorder. I don't expect perfection. What I hope for is compassion, curiosity, and a willingness to listen.

Here are five things I wish every doctor understood about living with NF.

1. Neurofibromatosis Absolutely Can Cause Pain

Please don't tell me that NF doesn't cause pain.

I live in this body every day, and I know what I feel. The tumors, nerve involvement, pressure, headaches, joint discomfort, and other complications can cause very real pain. Even when the source is not immediately visible on a scan or easily explained, that does not make the pain imaginary.

When I say I am hurting, I need my doctor to believe me. I need help exploring the cause and finding ways to manage it—not another reason to question myself.

Sometimes the most healing words a doctor can say are, “I believe you.”

2. External Tumors Are Not “Just Cosmetic”

The tumors that grow on the outside of my body affect much more than my appearance. They may become irritated, painful, itchy, or catch on clothing. They can bleed or make ordinary activities uncomfortable. They can also affect how I see myself and how safe I feel being seen by others.

Please do not dismiss these tumors as “just cosmetic” or tell me that I simply have to live with them.

Help me understand my treatment options. Learn how these tumors can be safely removed or managed. If you can't provide that care, help me find a specialist who can.

Wanting relief does not make me vain. My comfort, dignity, and emotional well-being are important parts of my health.

3. Every Person With NF Is Different

Neurofibromatosis does not look or feel the same for everyone. Even people within the same family can experience it very differently- My brother and I experienced NF in many different ways...Heck, we even participated in a study - for JUST that purpose!  www.NIH.GOV

Please see me as an individual—not as a paragraph from a medical textbook or a list of the most common symptoms. When I explain that something in my body has changed, listen carefully. When I tell you that a symptom is affecting my daily life, please don't dismiss it simply because it is not what you expected.

I have spent a lifetime learning the patterns of my own body. I notice when something feels different. I need a doctor who is willing to hear me and investigate alongside me.

4. If You Don't Know, Help Me Find Someone Who Does

I understand that NF is complex and that not every doctor will have experience treating it. It is okay to say, “I don’t know.”

What is not okay is leaving me without direction.

If you are unfamiliar with a symptom or treatment, please help me find an NF specialist or another medical professional who has the right knowledge. Reach out to colleagues. Look for appropriate resources. Help me take the next step instead of sending me home feeling alone and discouraged.

Admitting that you don't have an answer doesn't make you a bad doctor. Being willing to help me find that answer makes you a caring one.

5. Please Be Open to the Possibility That I Know More About NF Than You Do

I don't say this with disrespect. I say it because I live with neurofibromatosis every single day.

I have spent years researching, asking questions, attending appointments, connecting with others in the NF community, and learning how this condition affects my body. My knowledge may not come from medical school, but it comes from lived experience—and that experience has value.

I don't want to compete with my doctors. I want to work with them.

The strongest medical relationships happen when professional knowledge and patient experience are treated as partners. I need doctors who are willing to listen, learn, and recognize that I bring something important to the conversation too.

Thriving Means Continuing to Speak Up

Thriving with neurofibromatosis does not mean pretending that everything is easy. It does not mean ignoring my pain, accepting dismissal, or smiling through every difficult moment.

Sometimes thriving means asking one more question. Sometimes it means requesting another opinion, searching for a specialist, or reminding someone that my symptoms are real. Sometimes it simply means finding the strength to walk into another appointment and hope that this time, I will truly be heard.

I am not asking doctors to have every answer. I am asking them to see me, believe me, and stand beside me while we search for those answers together.

I am more than my tumors. I am more than my pain. I am more than a condition that many people do not understand.

I am still learning, still advocating, and still moving forward.

I am still THRIVING with Neurofibromatosis.

 

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.