How Gaining Knowledge About Neurofibromatosis Has Empowered Me

This post was requested by the Children’s Tumor Foundation, whose mission is to drive research, expand knowledge, and advance care for the neurofibromatosis (NF) community. As this is an issue close to my heart, I was happy to write about it.

Recently, I was asked the following: “What’s one ‘survival tip’ you’d like to share with other people living with neurofibromatosis (NF)?”

So many things ran through my mind, such as dealing with bullies, hearing hurtful comments or experiencing painful days. How could I pick just one? But if I had to say just one thing, it would be: learn.

We’ve all been there before. You see a new healthcare professional, and while going through your chart, they look up and say something like, “Neuro what?”

It’s enough to tense the devil!

Back in the day, when meeting a new healthcare provider, I never said the word “neurofibromatosis.” I always said “NF.” It was a test and my way of determining if the person I was speaking to was knowledgeable or not. If they asked what NF stood for, I knew they were not qualified.

Neurofibromatosis has come a long way on the awareness trail. Unfortunately, there continues to be a void in the medical community, as many still do not know or truly understand what NF is all about.

However, if you think about it, isn’t it a bit unrealistic to think that every doctor, regardless of specialty, should know something about every disease and disorder?

Here’s food for thought: what if we viewed these exasperating situations as opportunities or as teachable moments? This is where my tip “learn” comes in and why you need to know what NF is all about.

You can be the teacher. You can be the smartest person in the room (at least where NF is concerned). Learn all you can about NF, be willing to teach others, and do your best not to get emotional if they don’t get it.

Now that I’m a bit older (and maybe wiser), I am making an effort to be a better partner in my care. When I get into a discussion about NF with an uninformed healthcare provider, I enjoy giving them a brief overview of the condition and how it affects me. More times than not, these exchanges have been positive.

And isn’t that the ultimate goal? That interactions with the medical community are as pleasant and productive as possible and that they don’t turn into sparring matches?

Arm yourself with knowledge about NF because knowledge is power; knowledge builds confidence. Confidence will lead to other thoughtful questions and hence, more knowledge. Knowledge will make your doctor appointments more efficient, and knowledge will help you pick a doctor that is right for you.

The internet can be a great place to start. Stick to reputable science-based websites such as the Children’s Tumor Foundation, and do your best to steer clear of generic, cure-promising health websites.

Gandhi is credited with saying, “Be the change you want to see in the world.” While that may sound like an arduous task, it’s really quite simple.

If you want others to understand NF, then you must start with yourself.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Ridofranz

Find this story helpful? Share it with someone you care about.

Related to Neurofibromatosis

Male caregiver helping client with medication.

How Caring for Others With Disabilities Helps Me Cope With My Condition

I have a genetic disorder called neurofibromatosis. It causes tumors to grow on nerve endings externally and internally. Two of my daughters also have this disorder, and it has caused them several medical issues. Life with this disorder is often not easy. Depression,  anxiety, chronic pain, learning disabilities, deformities, and cancer can be a few [...]
professional camcorder on the tripod, selective focus on nearest part

The Portrayal of Neurofibromatosis in the Media Needs to Change

I am part of a community of rare families. Everyone of us has a loved one with the genetic condition neurofibromatosis type 1 (NF). It is a condition that affects only 1 in every 2,500 births — so when any mention of it arises in the media, we want to share like crazy to bring awareness. The [...]
Jeannie's daughter smiling in their yard

The Moment I Realized Apert Syndrome Was Here to Stay

The first two weeks after Sarah’s birth, I was swimming in a sea of denial. It was so deep, however, I denied my denial. Every morning I would wake up and wonder, “Maybe this has all been just a bad dream.” I prayed she would be healed of Apert syndrome. I asked our lives would resume to a steady, [...]
sad pensive girl profile on black background, monochrome image

It's Not OK to Compare My Pain to Someone Who Has It 'Worse'

As hard as it is to believe, I am actually in chronic and debilitating pain despite my youth, but I’m not a hypochondriac, drug seeker or attention seeking. Pain is relative, whether it be physically or psychologically — which means that every pain that can be humanly experienced is felt differently by any individual. This means it is literally [...]