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.

When Goodness Shines Through

 

Sometimes, it feels like genuine goodness has become rare.

We live in a world where people are quick to judge, criticize, and look the other way. Doing the right thing—even when no one is watching—can seem almost extraordinary. There are days when I find myself wondering what happened to kindness, compassion, and the simple act of caring about another human being.

On those days, I think about the preschoolers I teach.

I wish everyone could see the world the way they do.

Preschoolers do not care about the things adults use to divide one another. They do not notice whether someone wears expensive clothes, drives the right car, has a perfect body, or lives a picture-perfect life. They do not measure a person’s worth by their appearance, abilities, mistakes, or struggles.

They simply see a friend.

They offer hugs without hesitation. They invite someone to play because no one should be left out. They forgive quickly, laugh freely, and love with their whole hearts. Their kindness is pure because it does not come with expectations. They remind me that goodness is not something we have to learn—it is something we begin with.

Somewhere along the way, many people lose that innocence.

Living with neurofibromatosis has taught me a great deal about people. It has given me the ability to really see them—not just as they present themselves, but for who they are underneath. I notice who looks away and who chooses to look closer. I notice who judges what they do not understand and who takes the time to listen. I notice who disappears when life becomes uncomfortable and who quietly stays.

Sometimes, that realization makes me sad.

It hurts to discover that someone’s kindness only exists when life is easy or when there is something in it for them. It hurts to feel misunderstood, overlooked, or judged because of something I did not choose. Neurofibromatosis has revealed parts of people that I sometimes wish I had never seen.

But every once in a while, someone’s goodness shines through.

It appears in the person who asks how I am—and truly wants to know. It is found in the friend who sits beside me when there are no perfect words. It shines in those who choose compassion instead of judgment, patience instead of frustration, and love instead of fear.

Those moments restore something in me.

They remind me that goodness still exists. It may not always be loud or attention-seeking. Often, it is quiet. It is a hand reaching out, a thoughtful message, an unexpected act of kindness, or someone choosing to do the right thing simply because it is right.

Maybe we could all learn something from preschoolers.

What if we looked beyond appearances and simply saw the person standing in front of us? What if we invited others in instead of shutting them out? What if we forgave more easily, loved more openly, and stopped deciding someone’s worth before knowing their story?

The world does not need more perfection. It needs more people who are willing to be kind when kindness is inconvenient. It needs people who choose goodness when no one is watching.

Living with neurofibromatosis has shown me some difficult truths about people, but it has also made the beautiful moments impossible to miss. Because when you have experienced judgment, genuine acceptance feels even more powerful. When you have seen darkness, even the smallest light becomes extraordinary.

And when goodness shines through, I see it.

I feel it.

And I am reminded that there is still hope for all of us.

Still Here. Still Thriving.

Still Choosing to Thrive: Growing Older With Neurofibromatosis

I have lived with neurofibromatosis for my entire life, but living with NF has not always looked or felt the same. When I was younger, my symptoms were easier to hide. I could move through the world without everyone knowing what was happening beneath the surface. I pushed the signs of NF into the background...And I got away with this, until my OFFICIAL DIAGNOSIS in 2007.

But aging has changed that...I can no longer push aside the symptoms.

As I grow older, NF seems to demand more of my attention. New symptoms appear, familiar ones become harder to ignore, and my body no longer recovers as easily as it once did. Pain, exhaustion, physical changes, and the uncertainty of what may come next have become a larger part of my life. Menopause and the natural aging process have added another layer, making it difficult at times to know where one struggle ends and another begins...One exacerbates the other. 

There are days when I look in the mirror and barely recognize the body looking back at me. I see the evidence of time, but I also see the evidence of NF. Every new symptom can carry a wave of fear.  The progression of NF seems cruel and unfair.

What am I learning from this?  What's the point of it all?  Why won't God just cure me?

Those questions can be exhausting.

At my core, I am still determined to THRIVE. That word means something deeply personal to me. Thriving does not mean pretending that everything is fine. It does not mean smiling through pain or denying the fear and frustration that sometimes settle into my heart. Thriving means continuing to live, love, laugh, and hope—even when NF makes those things harder.

Some days, thriving looks like strength and confidence. It looks like showing up for the people I love, enjoying time with my family, and refusing to let a diagnosis define the boundaries of my life.

Other days, thriving simply means getting out of bed.

It  also means allowing myself to rest without feeling guilty. It means admitting that I am tired. It means crying when I need to cry and reminding myself that one difficult day does not erase a lifetime of courage.

As I grow older, I also find myself understanding my mom in ways I never expected. She carried her own anger, fear, and frustration surrounding neurofibromatosis. When I was younger, I could not fully understand why she seemed so bitter or why she blamed God for the pain NF brought into our family. Her anger affected all of us, and for a long time, it was difficult for me to look beyond it.

Now, on my hardest days, I understand her a little more.

I understand what it feels like to be angry at a condition that takes without asking. I understand the helplessness of watching the people you love struggle. I understand the guilt that can come from knowing a genetic condition has been passed from one generation to the next. I understand how fear can turn into frustration and how frustration, when carried for too long, can become anger.

But understanding my mother does not mean I have to become consumed by the same anger.

I refuse to give NF that much power.

I will acknowledge the hard days. I will be honest about the pain, the fear, and the ways my body is changing. I will not shame myself for feeling discouraged. But I will also keep looking for beauty. I will keep holding my family close. I will keep celebrating ordinary moments, because I have learned that those moments are often the most amazing.

Neurofibromatosis is part of my story, but it is not the whole story.

I am a woman living with NF. I am also a wife, a mother, a soon to be grandmother, a teacher, and a friend. I am someone who has carried fear and still chosen hope. I have watched my body change and still found reasons to be grateful for the life it allows me to live.

Aging with neurofibromatosis is not easy. Some days, I feel strong enough to face anything. Other days, I completely understand my mother’s frustration and anger.

But even then, somewhere beneath the exhaustion and fear, my strong spirit remains.

I may crumble. I may grieve. I may need to stop and rest.

But I refuse to give in.

I am still here.

I am still growing.

And even on the hardest days, I am still THRIVING!.

Neurofibromatosis, Pregnancy, and Choosing Hope in the Unknown

 Pregnancy is often described as a season of joy, anticipation, and beautiful dreams. But when you live with Neurofibromatosis—or love someone who does—pregnancy can also carry a fear that is difficult to put into words.

Alongside the excitement comes an aching question: What if my baby inherits this condition?

Neurofibromatosis is unpredictable. It can affect each person differently, even within the same family. One person may experience relatively mild symptoms, while another faces tumors, chronic pain, surgeries, learning challenges, or complications that change the course of everyday life. That uncertainty can make the decision to have a child feel incredibly heavy.

The fear is not simply about passing on a gene. It is about wondering whether your child will someday struggle. It is imagining appointments, scans, difficult decisions, and moments when you may feel helpless. It is the possibility of watching someone you love experience challenges you understand all too well.

Then comes the guilt—the kind that can begin before a baby is even born.  I remember, after my own 'official' diagnosis, the weight of the guilt was overwhelming.

You may question whether it is selfish to want a child. You may wonder whether you are making the right decision. If your child does inherit Neurofibromatosis, you may blame yourself, even though genetics are not a moral choice and love is never something that needs to be justified.

These feelings are real. They deserve to be acknowledged, not brushed aside with easy answers or forced positivity.

But there is another truth that deserves space, too: no parent is ever promised certainty.

Every pregnancy begins with unknowns. Every child enters the world with a story that has not yet been written. Parents can make careful decisions, ask questions, seek medical guidance, and prepare as much as possible—but no one can predict every challenge or protect a child from every hardship.

That does not make the fear disappear. It simply reminds us that uncertainty is woven into every human life.

A diagnosis may become part of a child’s story, but it does not have to become the whole story. A person with Neurofibromatosis is still capable of joy, love, laughter, purpose, accomplishment, and deep connection. They may grow up to become an artist, a teacher, a parent, a friend, an advocate, or something they have not even imagined yet.

They are not only their scans, tumors, symptoms, or medical appointments. They are a whole person with dreams, strengths, quirks, talents, and a life that holds endless possibilities.

Living with Neurofibromatosis can also create a kind of strength that is difficult to explain. For me, growing up with a mother who blamed god, blamed herself, and blamed everyone around her, for the consequences of her choices...I also had a choice to make.  Follow her road to the never-ending road to no-where, or make the choice to live beyond the fear- and stop being a victim. 

Living with NF has taught me resilience, compassion, patience, and the courage to keep moving forward without knowing exactly what lies ahead. Those lessons are not easy, and I know- no one would choose the pain that life sometimes brings them. 

Still, beauty can grow beside difficulty.

I like to think that courage is not the absence of fear...But, maybe, courage is allowing ourselves to hope while fear is still present.

For anyone facing pregnancy while carrying a genetic condition, it is okay to feel excited and terrified at the same time. It is okay to grieve the certainty you wish you had. It is okay to speak with genetic counselors, ask difficult questions, lean on people who understand, and take the time you need to make decisions that feel right for you and your family.

There may never be an answer that removes every doubt. Sometimes, we simply make the most loving decision we can with the information we have.

Life has never promised us predictability. What it offers instead are moments—first heartbeats, tiny fingers wrapped around ours, laughter filling a room, and love that arrives larger than we ever expected.

Neurofibromatosis may bring uncertainty, but uncertainty does not mean hopelessness.

None of us knows exactly what the future will hold. We only know that life, even when complicated, can still be meaningful and beautiful. We know that people can face difficult things and still THRIVE.

We know that fear and hope can live in the same heart.

And sometimes, choosing hope in the middle of the unknown is the bravest beginning of all.

THRIVE ON

My grandson-

Jacen Michael