We May Be Rare, but We Are Not Alone on Rare Disease Day

We May Be Rare, but We Are Not Alone on Rare Disease Day
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As we approach Rare Disease Day on Feb. 28, I reflect on the pros and cons of the word “rare.”

Apart from my chronic illness, I love being unique. There’s something wonderful about having an uncommon skill or piece of knowledge. It’s partly the whimsy of having something that’s a novelty. But even greater is my love of sharing something new and different that might change a person’s perspective — something they might adopt as their own.

When I think about Rare Disease Day, I don’t carry the same enthusiasm for the word “rare.” In looking for something to celebrate at the end of the month, I’m not thinking about what sets me apart as someone with lupus. Instead, I think about how rare diseases bind warriors together as a community. 

I’ve been writing this column since August 2016, and in that time, I’ve learned a lot about myself, both as a person and a writer. I also learned about community. What has resonated with me most is that we’re not as alone as we tell ourselves we are.  

Being diagnosed with lupus instantly made me feel like an outcast. While everyone else seemed to be “normal,” I was suddenly the “other.” In the beginning, “other” felt interchangeable with words like “weird,” “different,” “unusual,” and “sick.” I identified with those words early in my lupus journey and felt overwhelmingly isolated.     

One night not long after my diagnosis, I lay awake with prednisolone-induced insomnia while the rest of my family slept. As I stared into the darkness at 2 a.m., I finally understood what people mean by “deafening silence.” Tears ran down my cheeks. I had never felt so alone or disconnected from the rest of the world.

What stands out most about that night is how unique the isolation felt. My brain convinced me that no one else could understand me. Later that year, I would use that night as inspiration for a column.   

As I wrote that piece, I was uncertain whether the topic was worthy of writing about at all, let alone of sharing online. But despite the doubt, I did it anyway — and it’s a decision I’m proud of to this day. Ironically, it was a column about isolation that connected me to my Lupus News Today audience for the first time. It’s funny that a night when I had never felt more alone inspired people to reach out to me.   

Lupus makes me rare. It means that my experience as a young adult is full of obligations that are not the norm for a 20-something. It has made resilience a necessary skill for survival. And it has shown me that life is often unfair.  

But as rare as I may be to the wider world, I am not without excellent company. I am forever grateful to have found the lupus community — fighters, survivors, and warriors who share my experience. The journey is rare but never endured alone.   

The things that make us rare are the same things that can make us feel isolated. If you feel alone this Rare Disease Day, remember: The things we have in common bind us together.   

What will you celebrate on Rare Disease Day? Let me know in the comments below.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to lupus.

“Kristi” is a surfer, barista, and university student studying for arts and science degrees in philosophy and mathematical modeling. Living on the picturesque Bellarine Peninsula on the southeast coast of Australia, she’s deeply passionate about salt water and amazing coffee — even though she’s not allowed to drink it. Above all else, she loves traveling the world! Diagnosed with stage IV lupus nephritis at 20, she’s determined to not be defined by her autoimmune condition. Using writing as a medium for self-expression, she hopes to share her life and journey to both raise awareness and support others in similar situations. A big believer in the concept of dialectics, she loves sharing and hearing unorthodox, sometimes controversial, views. She’s quirky by choice, inquisitive by nature, and smiling always!
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“Kristi” is a surfer, barista, and university student studying for arts and science degrees in philosophy and mathematical modeling. Living on the picturesque Bellarine Peninsula on the southeast coast of Australia, she’s deeply passionate about salt water and amazing coffee — even though she’s not allowed to drink it. Above all else, she loves traveling the world! Diagnosed with stage IV lupus nephritis at 20, she’s determined to not be defined by her autoimmune condition. Using writing as a medium for self-expression, she hopes to share her life and journey to both raise awareness and support others in similar situations. A big believer in the concept of dialectics, she loves sharing and hearing unorthodox, sometimes controversial, views. She’s quirky by choice, inquisitive by nature, and smiling always!
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