Imagine a disease where your body’s immune system attacks healthy tissue and organs instead of infections. This disease, which I’ve lived with for over a decade, is lupus.
The Lupus Foundation of America estimates that 1.5 million Americans, and at least 5 million people worldwide, have a form of lupus. Of the adults with lupus, nine out of 10 are women, and one in three suffer from multiple autoimmune diseases (or what I refer to as an “autoimmune cocktail”).
While people of all races and ethnicities can develop lupus, it is two to three times more prevalent among women of color. Many lupus patients get a “butterfly rash” on their faces, which is commonly associated with the disease, but this isn’t the case for others like me. That means diagnosis of the disease is often difficult.
My lupus started with ocular migraines, although looking back, I recall having sun sensitivity issues earlier. The magic bullet in diagnosing my lupus was lab work — my abnormal blood results showed that something was going on. Over the years, I’ve gone from being needle-phobic to being a pro at getting blood drawn.
According to the Lupus Foundation of America, lupus is known as an invisible illness because someone with lupus can appear perfectly healthy despite battling many internal issues, such as debilitating pain, extreme fatigue, blood disorders and more.
Lupus is unpredictable, and while it never goes away completely, there are times when it’s more active (called a lupus flare).
Stress can trigger a lupus flare and make symptoms worse. During a particularly bad flare in 2015, lupus affected my blood, kidneys, digestive system, lungs, heart and brain. In a cruel twist of fate, just as I thought I was getting through the flare, I ended up having a stroke (also more common in lupus patients than in the general public).
The Lupus Foundation of America refers to us as “lupus warriors.” I like that description. Every time I try yet another medication or experience a new symptom or side effect, I remind myself of my warrior status.
A recent survey conducted for the Lupus Foundation of America found that over half of Americans have never heard of or know little to nothing about lupus. This month is Lupus Awareness Month, and Friday is Put on Purple Day. I hope you will join me in wearing something purple that day and telling people why, so that we can raise awareness of lupus.
I would like to band together other lupus warriors in Champaign-Urbana and the surrounding community to share resources and support one another. If you are a lupus warrior (or caregiver) and would be interested in joining a local support group/Facebook group, email firstname.lastname@example.org.
Learn more about lupus at lupus.org.