Living with Lupus

I’ve had different health challenges for as long as I can remember. When I got into college and really had to manage my own health care, things took a turn for the worse. Appointment after appointment and I left college thinking I had Chronic Fatigue Syndrome. I was told that if I was too active, my fatigue would get worse, but that resting wouldn’t really make it better. So, basically, they couldn’t do anything to help and had no real answers for me.

That would be the start of what would turn out to be a very long journey trying to find a medical professional who would listen to me, my symptoms and take it all seriously. 7 years later, with a whole lot of symptoms, a compromised quality of life, and this belief that somehow I was making it all up (because I actually had a doctor tell me that), I was finally properly diagnosed. Many people would think I see that day as a bad one, but I remember the summer of 2009 very fondly. It was the day this brand new (to me) doctor told me he needed to run some tests because he thought the issues I was having were 3 totally different things all at the same time. It was the day this brand new (to me) doctor took my symptoms seriously and said he was concerned that I was really sick and that I had been for a while.

Many tests (and doctors) later, I was diagnosed with Lupus or SLE, Systemic Lupus Erythematous. (As well as cluster headaches and what was presenting at the time as hyperthyroidism, but was later diagnosed as Hashimoto’s Thyroiditis.)

Lupus is a long-term, chronic autoimmune disease where my body’s immune system mistakenly attacks healthy tissue (as opposed to the infections it should be fighting). Lupus can cause inflammation and pain in any part of your body, but most often affects your skin, joints, and internal organs, such as your kidneys. For me, my kidneys and lungs are the most affected by my flare ups and bouts with inflammation. I’m also severely photosensitive to UV rays, fluorescent light bulbs.

My origin story isn’t unique. So many people have similar stories, but especially women of color. According to Lupus.com, “Lupus is two to three times more prevalent among women of color — African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders — than among Caucasian women. Recent research indicates that lupus affects 1 in 537 young African American women.” I will never forget the number of doctors who told me that nothing was wrong or that I was exaggerating my symptoms. When I would tell them that mild sun exposure caused me to faint or struggle to breathe and they would tell me that nothing causes that.

I learned that through all of this, I have a diagnosis because I never stopped being my own advocate. Even when medical professionals ignored me, I never stopped. And now I want to be there for other people, but especially other women of color, who don’t feel supported in their journey to figure out what might be wrong. I hope you have a moment like I did in the summer of 2009.

Please note: I am not a medical professional and, as such, am unable to offer medical diagnoses or medical advice. What I can offer, though, is support, as well as my own personal experiences.