What I Want Other People With Fibrous Dysplasia to Know


Originally, my website was created to tell the story of my life with the chronic illness that I was diagnosed with at 12 years old: fibrous dysplasia (FD).

So, two days ago, I opened up Microsoft Word and started to explain that in the middle of my sixth-grade school year, in January 2007 to be exact, I was diagnosed with this disease. It was found in the right side of my face and upper skull. I went on to explain that less than two months later (March 2007), I had my first facial reconstructive surgery.

I was 12. I typed out the details of my surgery. They cut me from ear to ear, pulled my face down, shaved back the FD, and then took a piece of my left rib and built me a new eye socket.

I added a definition of the disease: “Fibrous dysplasia is an uncommon bone disorder in which scar-like (fibrous) tissue develops in place of normal bone. This can weaken the affected bone and cause it to deform or fracture.” – Mayo Clinic

That is as far as I could get in my life story. It’s as far as I usually get before I draw a blank on the specifics of the diagnosis, the surgery, and the recovery.

It’s been 10 years, and when I talk about that time what I remember is the relentless bullying that took over my school year. I remember how small people made me feel. I became embarrassed in my own skin.

But why?

skull of a teen with fibrous dysplasia
3D image of my FD

If you know me today, you know I am one of the biggest advocates for not letting this disease control your life or how you feel about yourself. So why would I let people control me in such a way? Why would I let myself begin to feel so ashamed?

Let me make this very clear: if I could go back in time and change how I felt, I would not. The people who bullied me like they did taught me some important lessons, most of which we won’t discuss now.

The most important lesson I learned then was that it doesn’t matter what anyone thinks of you. You just have to care about yourself. And once people see you taking care of yourself first, they may follow, beginning to treat you as you deserve to be treated.

One of the “problems” with fibrous dysplasia is that it’s not a visible disease. It’s rare and it’s often subtle in the exterior signs of the condition. In short – people around me don’t know I’m sick. They don’t know I’m in pain. They don’t know what FD is and they can’t empathize with my hidden condition.

There are people who have FD and other “invisible diseases” who don’t want others to know they are sick, and I can relate to that. Because I know FD, I’ll address only it.

What I want people who have FD to know is that, yes, you are sick and that is never going to change. And there are days you won’t be able to keep up with those around you, but that is OK. Learn to embrace this; all it is is an obstacle, and it can make you stronger. It’s like the saying goes, “those who mind, don’t matter, and those who matter don’t mind.”

If someone is being harsh toward you about FD, take their negativity and make something great with it. Become an advocate not only for yourself but for others battling the same insecurities.

To date I have had three facial reconstructive surgeries and two bone graphs. I receive negative comments about FD and my life every day. I get asked why my husband stays with me when he could find someone he doesn’t have to help take care of. I won’t lie to you, I have my days when the negativity gets to me, but the further I get in my accomplishments the more I can let the rude comments roll off my back.

Today, I spend my time running a nonprofit organization that I founded called FD Warriors. FD Warriors helps those affected by FD pay medical bills. I send out monthly newsletters and I run my own website. I am a part of a support group that consists of almost 2,000 members who either have FD or who love someone living with FD. They are from all over the world.

What I am doing with FD is my dream. I am helping others, and to me that is making a difference.

This disease is how I am going to change the world.

Follow this journey on Fibrous Dysplasia Warriors.

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

Thinkstock photo by David De Lossy

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