Rare Disease Day 2020 – Guest Post
“When we were children we were each told that we were special, that we were rare.
We grew up to believe that rare is this wonderful, almost magic like quality that we should protect. Yet when we get older I feel that society attempts to alter this beautiful and pure vision of rare. Rare goes from being something special and unique to different and other. Something that is not understandable that sits outside of the norm.
Unfortunately we see that echoed too much today with so many people who are suffering from rare illnesses physically, mentally and genetically like me. None of us would admit—oh well this disability, illness, or mental illness makes me uncomfortable but we’ve all had that passing thought. Because we no longer look at rare as beautiful, as a different way of approaching the world, as something to protect fiercely—but something to fix.
Today on Rare Disease Day, I’d like to challenge that perception. Whether an illness is mental or physical. Visible or Invisible like mine I want to speak out and encourage those that feel alone and different. You can have a debilitating illness and still live a happy and successful life. You can have schizophrenia and still have a family. You can have a physical disformity and still be an athlete or a model.
Now I have personal experience with this. It’s not easy. There are days when I’ve been so sick that I’ve felt like giving up. Like my life wasn’t worth living. I questioned why I was this way and I wished for nothing more than to be normal. But then I asked myself what is normal. Having DADA2 is my normal and it has shaped me so much as a person in ways that I am forever grateful. The adversity that I have faced has given me a compassion for others. Has shown me my strength. Has taught me how to be a voice for myself and the downtrodden because I know that no matter what circumstances life throws at a person they can and will overcome it. I have learn the power of the human spirit and the resilience in heartache.
You are always stronger than you believe. Nothing can ever conquer you. God never leaves your side not even in your darkest, loneliest, scariest hour. Even when you curse Him and are angry at Him, He continues to faithfully love you. I have learned what true love is. I have learned to face what scares me the most to stare it in the face and say: you will not have me; you will not defeat me. I have learned that I can do anything I want. That I am capable of so much more than I ever imagined. I’ve learned balance. I’ve learned it’s okay to ask for help and okay to say no.
I’ve seen beauty in tragedy. Which allows me to see beauty in life. Allows me to appreciate life more fully even if it’s something as simple as the wind blowing cooly against my cheek. I’ve seen the true kindness that lives within all of us. Which makes me believe in the innate goodness of humanity. I’ve learned to let people in—to love fully even if it hurts. I’ve learned that people want to love me. I’m blessed with amazing friends and family that have supported me through ever up and down of this journey. You cry alongside me and rejoice in my victories. I’m beyond thankful for how each one of you have touched my heart and influenced my story and path.
Having a chronic rare disease is not easy. It is upsetting. It seems like a roadblock. It is scary. It is a challenge. But then I’m reminded of rare. And while at times I hate being rare because I feel alone or isolated. I feel underestimated or as if I cannot fit into this world. I remember the beauty of a rare flower. The millions of people that come together to preserve a rare fish. The rarity and gift of life and our planet itself and I want people to know about this rarity of mine and thousands of others. It should be celebrated and not hidden. It is what makes humanity beautiful and diverse. It can pull us closer to understanding one another rather than drive us apart. Provide perspective. Rare is beautiful. Rare is a little bit of magic on this earth and today we celebrate that magic and recognize how it enhances the world while also recognizing that rare doesn’t isolate you from the rest of the world. You are meant for this world. Do whatever you want. Be who you want to be—you are valued, you are legitimate. Your life has worth. You are normal. You are rare.”
- A RARE and beautiful woman’s journey…