Sunday, October 26, 2014

Being the Girlfriend with Neurofibromatosis.....


Towards the end of September 2013 I met my boyfriend Joe. Coincidentally we went to the same high school, only he was a senior when I was a freshmen. In fact, the first thing he ever said to me was, "Hey, what high school did you go to?" To which I responded "King," he then said, "I knew I recognized you from somewhere."That one question lead to us talking for almost two hours and then to studying together for Classical Theory. On October 12th we had our very first date, by October 19th we officially began dating.
On October 19th 2014 we celebrated our one year.
Always and Forever
I guess my bullies were mistaken because I did find love, I found a man that was worthy of my love and I of his.
"You are ugly" I would hear from my classmates and the saddest part was that I believed them. I believed them for the longest time despite having amazing family and friends who did everything in their power to make me feel not only beautiful but also intelligent and admirable.

My family and friends were right all along.  They told me that I would find a man that did not need to see past my NF because he would embrace my NF, and that is what Joe has done and continues to do. Having NF is not easy and being a GF with NF is not easy either. I say it is not easy being the girlfriend with Neurofibromatosis because I still am, at times, very insecure with my appearance and  when we go out and about people stare, point, and comment to one another. I am not sure if Joe notices all the time but I do. Most the time I shrug it off.  I smile and wave when kids glare, but most the time I just ignore it.

Thus far, Joe has not seen me get all worked up and affected by the ignorance of others, and truth be told, I wish and hope he never does. He tells me I am beautiful and perfect. He tells me he likes each and everyone of my fibromas every time  I say, " I am getting more" pointing to the fibromas on my body. He pulls my hands off, looks into my eyes and says, " You've always had that one, you do not know what you are talking about." As if he knows my body more than me!

I ask him, "Will you still love me when my body in invaded with fibromas? "His response is, "Stop it! Your body will not be invaded with fibromas. And yes, I will always love you."
Joe is an amazing man that lets me know each and every day just how much he loves me, never letting me forget that to him I am beautiful and will always be beautiful; this took me years to understand and believe.  I say it is not easy being a girlfriend with NF because sometimes I see myself in the mirror and think that I am not pretty or attractive enough to be someones girlfriend.

 I look at other girls that do not have a facial disfigurement and think how easy it must be not having to explain why your face looks like it does. I sometimes wonder what Joe has told his family about my NF or if they have even asked him. I told Joe all about NF on our second date thinking that he would either embrace it or take me home and never look back (clearly, he embraced it).
He has yet to see me on the days that I do not like myself. Days when my fibromas look bigger or have quadrupled overnight. Days  I think my eye looks bigger or my face more disfigured. Days I just find every imperfection that in reality is not there.

 He has not seen my self-loathing to the fullest. Although, I have told him how I feel at times and the reason why  I tend to cover the right side of my face with my hair in an attempt to hide my scar and eye. After I told him about my hair and having it cover my face, he reminds me every so often to pull it out and off my face.  He compliments me and reassures me when I do pull it up and off my face. He says, "You have such a pretty face, don't hide it."

Living with an illness, disorder, disease, (call it what you wish) that is ever changing is not easy. I do not know if I will ever need more surgeries or if I will get more fibromas, but I do know that I have an amazing man by my side that will walk with me and hold my hand. Life with NF is not easy, but I have an incredible support system that makes living with NF almost a piece of cake!