The Butterfly Effect: How Lupus Changed Me
Image Courtesy: Lovely Grace Pilibino
Systemic Lupus Erythematosus, a word, an illness foreign to me until I was diagnosed. I would say in the past three years, we have become quite acquainted.
When I first heard my diagnosis I cried, in an effort to cheer me up the nurse said that Selena Gomez has Lupus. It didn't make me feel any better.
The term “disability” never seemed like something that would apply to me. I’d been an active, able-bodied person my entire life, an allstar cheerleader for most of my youth. I never needed help, never imagined a life of limitations. But lupus changed that. It forced me to slow down, re-evaluate my relationship with my body, and accept that things I took for granted-like getting out of bed, working out, and having a strong immune system-were now major challenges.
I quickly learned that living with a chronic illness is an ongoing burden, one I carry with me every day. Some days, the fatigue is so intense that even getting out of bed feels like a monumental task. Some days, when I have to get countless blood tests, it reminds me that lupus is always there, lurking just below the surface. It’s a fight that doesn’t show on the outside, but it’s constant.
If you had asked me three years ago where I saw myself today, I would never have imagined that I’d be where I am. Three years ago, when I was first diagnosed, I was bedridden, weak, and struggling to do even the simplest things. I could barely chew my food, take a shower, or even write at a third-grade level. My body felt like it was betraying me. I felt trapped in a body that didn’t feel like mine anymore.
Yet here I am, at my dream school-UGA-studying fashion. I’ve won a scholarship, made lifelong friends and achieved things that once felt impossible. Some days are still harder than others, but I’ve learned to celebrate every victory, no matter how small.
Image Courtesy: Lovely Grace Pilibino
Lupus may have changed my life, but it hasn’t defined me. It has made me resilient in ways I didn’t know I could be. And while I wouldn’t wish this disease on anyone, I’ve come to understand that strength is built through adversity. Every day is a new challenge, but with each challenge, I’m growing stronger and more determined to live the life I’ve always dreamed of.
I have also found my passion for disability advocacy in fashion, through my coursework and in my everyday life. I used to tell my nurses it was my dream to blend fashion and lupus together, and although it hasn’t happened yet, I know that it will work out eventually.
Image Courtesy: Lovely Grace Pilibino
Living with lupus– and any invisible chronic illness– is tough. But if there’s one thing I’ve learned over the past few years, it’s that you are never alone. My partner, family and friends have taught me that I am not in this fight alone. There are millions of people around the world facing similar battles, and together, we can support and uplift each other. So, whether you’re facing lupus or any other challenge, remember that resilience comes from the most unlikely places. Strength is born from vulnerability.
And no matter what, you can keep moving forward.
One step at a time.
Strike Out,
Lovely Grace Pilibino
Editor: Maddie Launer
Athens