The Strength to Adapt: Parenting Through Lupus

This Father’s Day, we’re celebrating the fathers in the lupus community who show up every day, not always in the ways they imagined, but always with intention. For Michael Johnson, living with lupus has meant reimagining what fatherhood looks like and finding that the bond he shares with his son Xavier is stronger for it.

Several weeks ago, Michael decided to take up taekwondo. Ever since, he’s received tips from a personal instructor.

While it’s not uncommon for new students to get individualized training as they learn the many different forms of taekwondo, not everyone has the benefit of private lessons from their 10-year-old son.

“My son is a black belt, so he has been helping me practice at home,” said Johnson, one of the co-facilitators of the Lupus Man Cave, a virtual support group created by and for men living with lupus. “He’s been helping teach the three-year-olds, so he’s used to giving people pointers.”

Johnson, 44, who was diagnosed with lupus in 2017, said that taekwondo is an indoor activity that he can do at his own pace, and it allows him to bond with his son, Xavier. As a father with lupus, Johnson has had to adjust the role he plays in his son’s life.

“Living with lupus has changed the way I approach fatherhood, especially when it comes to physical activities and managing energy levels,” Johnson said. “There are certain things I can’t always do, especially living in Arizona. I’m not always able to keep up physically, especially with sports or more active outdoor activities.”

Johnson shared that Xavier, who is homeschooled, has grown up around people who need additional care and support, which made helping around the house second nature. From the time he was two until he was eight, the family lived with his maternal grandmother, who had leukemia.

Additionally, from a young age, Johnson brought his son with him to doctor’s appointments and took him to presentations to better understand lupus. Xavier also has done his own research, illustrating an innate interest in understanding what it means for his dad to live with an autoimmune disease.

“Having a son who understands what I’m going through means the world to me,” Johnson said. “Living with lupus is challenging, especially on the harder days, so having his support makes such a big difference.”

Johnson shared that when his son was younger, it was more challenging to manage his lupus and manage his responsibilities as a parent. But he would persist and have open discussions about how the disease was impacting him. Things are easier now that Xavier is more independent; he can pack his own lunch and get his school day started when he wakes up in the morning.

“He’s incredibly thoughtful for his age,” Johnson said, “and knowing that he wants to help and spend time together, even when I’m not feeling my best, is so meaningful to me as a father.”

Lupus often causes fatigue, joint pain and flare-ups that can make everyday life unpredictable. There are days when Johnson isn’t feeling great, which means a quiet day at home.

But on those days, the family will make sure to prioritize time together in ways that allow Johnson to participate — playing board games and video games and watching movies. Recently, they have taken to building Formula 1 LEGO kits as a way to spend time with each other.

“Most of the memories we create are indoors,” Johnson said. “We’ve learned to adapt as a family. My son has been amazing about understanding when I’m having a rough day, and we’ve found other ways to spend quality time together that still feel fun and meaningful.”

Michael’s story is a reminder that fatherhood isn’t defined by what you can do. It’s defined by how you show up. For Michael and Xavier, that looks like taekwondo lessons, LEGO kits, and a relationship built on honesty, adaptability and love.

Authored by:
Ian Decker

This blog post and the lupus resources found on the National Resource Center on Lupus are, in part, supported by the Centers for Disease Control and Prevention under Cooperative Agreement Number NU58 DP006139. The contents are solely the responsibility of the developers. Points of view or opinions do not, therefore, necessarily represent official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

This blog post is for educational and information purposes only. Consult with your doctor/health care team for medical advice.