Living with Lupus – Michelle’s Story

Our Living with Lupus series is going strong at the Narrative Matters.  Lupus is a prominent health issue in the Black community, and especially for Black women, and we want to continue showcasing survivor stories in hopes of spreading more awareness about this autoimmune disease. 

The Lupus Foundation of American states, 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 white women.[3] Recent research indicates that lupus affects 1 in 537 young African American women.

The women who have taken part in our series are nothing short of amazing – the same goes for Michelle Harris, a woman who has been battling Systemic Lupus Erythematosus since 2001.

Michelle recalled the first symptoms that she experienced during that time.

“I developed hand and joint pain. I remember I was in nursing school at the time, and I began to not be able to grasp the steering wheel. I couldn’t open containers, I was in a wheelchair at one point. It hit me very drastically. It came on gradually, but when it hit, it really hit.”

After getting lab work done at the school she was attending, the doctors found that her hemoglobin, among other things, were off. Based on her symptoms and lab results, another doctor, who had suspected she had lupus, ran another set of tests on her. Those results came back positive, and she was diagnosed with the autoimmune disease on the spot.

“Over the years I’ve been to several doctors and had several surgeries. When they first started treating me, they used high dose steroids, and now because of the use of those steroids, I developed avascular necrosis.”

Due to Michelle developing this condition, she’s had two total hip replacements and a total knee replacement. She also informed me that the condition is now starting to affect her shoulders. To make things harder, during this time, she was also diagnosed with APS, which is an autoimmune disorder which increases the risk of blood clots in a person.

Michelle continued to tell me that lupus has greatly affected her heart, lungs, and blood. She’s had several blood transfusions and she’s been retaining a lot of fluid in her body. 

Michelle then told me about her daughter, Alexus, who was diagnosed with lupus in 2008.

“Unfortunately on the lupus spectrum, she and I are totally opposite, where my blood gets too thick, and hers gets too thin. She was a St. Jude’s patient for all of her years of her secondary life. She’s had blood transfusions and she’s also developed avascular necrosis, as well. She also had to have all of her teeth pulled and what she has now are implants.”

Alexus didn’t let all that she’s been through stop her.  With persistence and determination, she graduated at the top of her class in high school and is currently in nursing school.

In 2009, Michelle started the We Care support group to help those living with lupus who were going through tough times. She said she needed an outlet while her daughter was in the hospital and while she was also dealing with the disease, and that the group gave her the strength and encouragement to keep going.

Prior to Michelle developing lupus, she didn’t know much about the autoimmune disease. 

She said, “When I was diagnosed, even when I was in nursing school and had been an LPN for 8 or 9 years, I was still ignorant to the disease of lupus. I had no idea of how it was going to impact my life. I had patients prior that I had cared for that had lupus, but they had discoid lupus or only one or two symptoms. For some reason, I got it real drastic and it developed in my organs, lungs, and everything. It really opened my eyes to what lupus was capable of.”

By the time Alexus was diagnosed, Michelle was able to prepare for some of the symptoms and complications her daughter would face.

If you’re someone who is battling lupus, Michelle advised to educate yourself, advocate for yourself, and find hobbies. She also emphasized the importance of taking time to rest and having a strong support system in place.

Michelle said, “It is truly important for lupus warriors to have a strong support system and a relationship with God. These have definitely guided and grounded me throughout the journey with coping with myself and my daughter. No matter the circumstance, God always gave me strength to be there for my child during her time of illness.” 

Michelle and Alexus have been through a lot, but they have overcome much more. I loved being able to talk with her about her and her daughter’s journeys, and their stories will surely help the lives of many. 

If you’d like to learn more about Michelle’s lupus support group, click here or email her at wecareamory@gmail.com.