Monthly Archives: March 2015

What “Rare” Means to Me?

In celebration of Rare Disease Day yesterday 2/28, I thought I would write a short post about what having a “rare” disorder means to me. In my earlier years, having a rare disease was nothing but an utter inconvenience. “Rare,” I thought, was just a less cool word for unique. I thought it implied negativity.
However, after many years of actually living with my disorder, as our love-hate relationship played out before me, I realized that “rare” does not need to be negative. Being a rarity myself has given me a keen eye for other rare things and that in of itself is beautiful. I no longer see the world as simply a collection of black-and-white, cookie-cutter pieces that need to be kept in their place, but rather, a collage of mismatching parts that somehow work together. Life is not perfect. People are not perfect. And how absolutely boring that would be if it were the case!
Not everything has an immediate function, purpose or reason. But often times we just need to put our trust in something that it will work out and then the function, purpose or reason comes to the surface later. That is what I had to do with my disorder. I did not want it and I did not like it. I did not understand why, of all the people and places and things in the world that I had to be the “rare” one. It did not seem like any sort of blessing at the time, but actually a curse. In my darkest time, I had no choice but to just put my faith in the fact that this disorder has some rhyme or reason and that it would come to me at a later time, when I most needed it.
I passed through childhood and adolescence and the disorder seemed to get harder. I just felt different and often times, that meant feeling weird. I looked at others; all I saw was how flawless they were and how flawed I seem to be in comparison. But then one day, and I honestly cannot pinpoint when this one day was, I started to really look at what makes up the world. I started to look closely at all the parts and pieces and what I saw was not perfection, but imperfection. A person who loves themselves or loves another despite society’s label of being broken or abnormal. Because what does “normal” really mean? Well no one really knows…so you should make up your own mind about what you want to be. Don’t try to fit the mold. Don’t let anyone tell you that “rare” means “weird.” It means beautiful.
Flaws may not actually be flaws at all, but as something of beauty. See your flaws in a new light. #Raredoesnotmeanweird #VLCADprobs