Dear Diary,
Today is Mother’s Day and World Lupus Day! I’ve celebrated Mother’s Day for 24 years now, but this is only my third Mother’s Day since learning that I have Lupus. The fact that Mother’s Day and World Lupus Day fall on the same day this year gives me pause to consider being a mother and having Lupus.
On Mother’s Day, my son and I celebrate “mommyhood,” my role in guiding, nurturing, and helping him navigate life in preparation for adulthood. On this day each year when he tells me “Happy Mother’s Day, Mama,” I take the time to remind him that he’s the greatest gift in my life. His father and I divorced when he was only three years old, so I raised him pretty much on my own—a fact that’s not lost on him, thankfully. He was by my side, a little trooper, as I worked full time, as I pursued various part-time businesses to help pay bills, as I studied all hours on the weekends to obtain a master’s degree, and most importantly, as I endured the many bouts of serious illness that we now know were related to the then-undiagnosed Lupus.
My son was by my side through it all, so it’s easy each year to embrace Mother’s Day, even if it is just a commercial holiday.
World Lupus Day, on the other hand is very new to me. Learning of my Lupus diagnosis only three years ago, I’m still sorting through what it all means for me. So far, I’ve learned just how differently Lupus affects each person, and my case certainly wasn’t an easy one to figure out. As an African American woman, I’m in the group of people who are more likely to be stricken with the disease. I’ve learned that I will be on medications to manage my illness episodes, called Lupus flares, for the rest of my life. I also know that these medicines give me the best chance at living as normal a life as possible.
My Lupus diagnosis has also given me a label to explain why I’ve been so sick most of my adult life. The explanation though, doesn’t carry much weight, I’m discovering, when I share it with others who are curious about why I walk with a cane or why I decline invitations or miss church. When I tell them I have Lupus, many people just simply have never heard of it. If I said I had cancer, diabetes, or even just high cholesterol, people would get it. Not so much with Lupus, unfortunately.
The fact that we have to have World Lupus Day just to increase awareness, as they say, is a shame, considering the sheer number of people suffering from the disease. According to the Lupus Foundation of America, about 1.5 million people in the United States have some form of Lupus. And, despite all the medical knowledge and advances, there remains no cure.
So, this year, World Lupus Day and Mother’s Day are both reminders to me of how blessed I am to be a Mom who’s raised an amazing son and a woman who’s thriving in spite of living with Lupus. I hope and pray World Lupus Day becomes a wake up call to the rest of the world who’ve never even heard of it.
I’ll do my part with this blog, my upcoming book, and my donations.
Love,
Olivia
