In July 2022, Katherine, a single mother of three children living in Puerto Rico, finally got an answer to the mysterious symptoms she’d been experiencing. She was diagnosed with systemic lupus erythematosus (SLE), commonly referred to as lupus, a chronic autoimmune disease that affects multiple parts of the body.

For Katherine, this moment brought a bittersweet sense of relief. “I felt happy because I knew something was wrong with me,” she shared. “But I was worried at the same time because I didn’t know what to expect.”

Katherine is not alone in her lupus diagnosis. Lupus occurs roughly nine times more frequently in women than in men, and Latina women are among those most affected by the disease. Lupus is about twice as prevalent (common) in Hispanic women as in white women. The highest prevalence of SLE is seen among non-Hispanic Black women, who experience lupus at about three times the rate of non-Hispanic white women. For Asian women, the prevalence is 1.4 times greater than that of non-Hispanic white women.

Lupus Symptoms and Parenting

SLE symptoms such as fatigue, brain fog, and physical limitations often get in the way of Katherine’s ability to keep up with her children’s activities or tackle day-to-day chores. “Not being able to do the things I usually do, like cleaning, cooking, or helping with homework, is one of the hardest parts,” she shared.

“I get brain fog,” she continued, “and it’s hard to remember things from their school and things I have to do at home.”

Katherine has shared information about her illness with her children and tries to help them understand what to expect. “I explain all the information I learn from different resources, and they understand,” she said. “I explained to my children how I was feeling and how the medications might have side effects.”

“I try to have a normal life with them, like going to the park, the movies, or the beach, but there are times I feel stressed and exhausted all the time,” Katherine said.

Balancing her healthcare with her family’s needs has been a juggling act. In addition to caring for her children, Katherine helps care for her father, who has cancer. This means she sometimes spends a good part of her time at medical appointments for herself or her father. “There are days when I want to spend the day with my kids doing something productive or different,” she explained.

Finding Good Medical Care

Katherine has also found it challenging to find good healthcare providers where she lives. “It’s hard to find a good rheumatologist here in Puerto Rico,” she shared. “I’ve had two, and now I’m looking for a new one. I think that sometimes specialists don’t pay attention to how you are feeling.” Along with the challenges of finding a specialist, Katherine is dealing with kidney complications related to SLE.

Despite these setbacks, Katherine emphasized the importance of being open and honest with healthcare providers. “Be sincere and express what your body is telling you,” she advised.

Advice for Other Mothers With Lupus

Katherine encourages other moms with lupus to have patience. “The only advice I would give is not to take life so rushed,” she reflected. “I hope each one of us finds the comfort, the courage, and the faith to love while taking care of others.”

Meet Others Who Understand

MyLupusTeam is the online social network for people with lupus and their loved ones. On MyLupusTeam, more than 233,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Are you a parent living with SLE or another type of lupus? How does having SLE affect your life as a mom or dad? Share your experience in the comments below, or start a conversation by posting on your Activities page.