Prior to my diagnosis, I had limited knowledge about Lupus; therefore, I was unaware of my symptoms and the impending battle that would be life-long. Throughout my journey, I’ve learned that raising awareness is key to fighting chronic diseases. By sharing our stories, we provide a level of hope — the likelihood that if people living with Lupus are heard, others will no longer be blind to the “invisible” and mysterious disease; they would be aware of the physical and mental struggles of Lupus and have empathy and advocate for others alike.
Thus, I share my story….
Systematic Lupus Erythematous is an unpredictable and misunderstood chronic inflammatory disease, which has no known cure. During the early stages of my diagnosis, I encountered frequent hospital admissions and short-term disability leave from work. Lupus began with my joints, which led to an additional diagnosis of Rheumatoid Arthritis. The inflammation caused by Lupus, eventually spread to my lungs, kidneys (Lupus Nephritis), and heart (pericarditis). Pericarditis causes a sharp, stabbing pain deep within my chest. The pain travels throughout my back, shoulders, and neck.
Even more, Lupus presents chronic fatigue, photosensitivity to the sun, occasional dysfunction with thinking and memory, and swelling within my hands and feet, which makes mobility difficult. To be completely honest, as someone who is a lover of fitness, I felt somewhat humiliated the first time I used my disability parking pass. I guess it was the added confirmation that limitations do exist with having this disease no matter your age. But luckily, I have a Dad who always make me laugh — he calls it "VIP" parking and then I don't feel so bad anymore.
Despite temporary setbacks, I’m currently a 3rd year Ph.D. student at the University of Georgia. Like most doctoral students, I desire to exceed expectations, yet this comes with unique challenges. To be successful, I write down reminders in numerous places as I struggle with memory, start assignments early to prepare for flares and extended time needed to focus. Outside of flares, difficulty with concentration and fatigue is hard to explain as most would assume that it’s “laziness” or typical student procrastination. When in fact, I want more than anything to work productively as often as possible.
However, the best part of my story is that Lupus has been a great reminder of how much love surrounds me. Throughout my struggles and wins, I’ve been overwhelmingly blessed with an amazing group of people, who are the true definition of humanity. Words can never express my gratitude for my family, friends, former Middle School students and fellow teachers, TFA team, peers, professors, medical staff (the heroes), “Mia & Me Creations,” and even strangers who took the time to pass along kind words and encouragement. Lupus can be an ugly thing, but it’s a beautiful thing to see friends and family come together with an abundance of unity and support.
-Annessia J. Bullard
Walk to End Lupus Atlanta, 2021