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.
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Thinkstock photo by Ridofranz
Hi, I’m Kelly. Here are a few things you need to know. Over the years I have racked up quite a few medical issues, a craniotomy for a brain stem tumor in 1999 and a diagnosis of Crohn's disease turned my world upside down. I've been doing my best to navigate but the road has not always been a smooth one. Lately it seems managing my medical life has become my full time job! Hence the label: Professional Patient. In the spring of 2016, I was inspired to write my first blog post in response to something I read on The Mighty. After they published it, I felt compelled to keep writing. I wrote a few more entries for them and other sites before I decided to take the plunge start my own blog. And that was how “Write Down the Middle” was born. For me, writing is a healing process. I write from the middle-ground perspective of a situation. I can usually see the not-so-good side right away but if I stay with my feelings, I eventually see the value. Not in a "Pollyanna" way, more out of curiosity and a desire to understand. My blog is about how I experience life as a professional patient, it not a substitute for medical advice or treatment. If you find something helpful to you, I’d love to know and certainly wouldn’t mind a like and share. All I ask is that you do not claim my words as your own, and acknowledge the writer accordingly.
kelly-ellur