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Why I Want You to Wear Jeans on February 29

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My name is Sabrina. I’m 21 years old. I’m a dancer. I’m a giver. I’m an advocate. I love fiercely and relentlessly. You tell me I can’t, and I’ll show you I can. I’m a future pediatric oncology nurse. And though you may not know it just by looking at me, my body is constantly at war with itself due to multiple rare chronic diseases that affect my organs and organ systems.

Each day may be filled with pain, nausea, vomiting, rashes, swelling and everything in between, but it is also filled with love, determination and prayer. Don’t get me wrong: Yes, I have these illnesses, but I will never confuse what I have with what I am — because I am so much more than the conditions that plague my body. My illnesses have tried to take so much from me, and at times they’ve been successful. I’ve lost the ability to eat, sleep and enjoy certain foods and activities, but so much beauty still remains.

girl smiling in hospital bed
Sabrina in a hospital bed.

On February 29, 2016, a community built of chronic illness fighters and those who love them will celebrate a day known as Rare Disease Day. You may think we are a small group, but I can assure you we’re not. I can promise you though these diseases are “rare,” the amount of people who fight them is great. Each of you may have someone in your life who is plagued by a rare disease. You may not even know it. “But you don’t look sick!” “You’re too young to be so ill.” “I haven’t heard of that.” If only I had a dollar for every time I heard comments like that — and two dollars for every time I heard it from a medical professional.

I have lost count of the days I have plastered a smile on my face despite the indescribable pain I felt raging in my body. I couldn’t tell you how many times I got sick in the bathroom but still went to class without a word. Many people will never see all the medications, planning, tubes and machines that are required just to get me out of bed some days. Most days you would never know my body is failing, that it is fighting — and that’s the way invisible illness works. For some reason the world tends to be more compassionate towards the illnesses they are able to see. Something about that makes it more believable. I can promise you my fight is every bit as grueling as any other illness can be. The pain I feel as a result of one of my conditions has been said to be even greater than childbirth.

My friends and I who fight these monstrous diseases do so with grace. We raise awareness for Rare Disease Day — not for pity or sympathy, but for compassion and understanding. To ask you to be kind and compassionate to everyone you meet, for they may be fighting a battle you know nothing about. We ask that medical professionals be mindful that though these diseases are rare, they do exist. Remember, even if it trots like a horse and looks like a horse, there’s a possibility it could be a zebra.

woman in red shirt sitting on floor making a fist
Sabrina raising awareness for Rare Disease Day.

However, it’s most important to us that we are able to let those fighting these illnesses know that no matter how rare their disease, they are never alone. We have all been there. We have all sat in a doctor’s office and cried out of hopelessness and desperation. We have all felt like we didn’t quite “fit” anywhere. Rare Disease Day acts as the foundation of a brighter future. It is building an infrastructure of hope that can rid this world of every stigma and negative connotation that comes from rare invisible illnesses. It is a prerequisite to a future where no one has to feel alone because of the illnesses they have.

So on February 29, please join me in supporting all of those who are fighting, have fought and will fight a rare disease. I encourage you to wear your favorite pair of jeans to remind people that regardless of what condition you face, we all have hope in our genes.

Follow this journey on #SimplySabrina.

Originally published: February 22, 2016
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