How I Manage My Lupus While Also Coping With Rheumatoid Arthritis

Even though Matlock was familiar with lupus because of her relatives, she wasn’t ready to face it herself. “I was in so much denial because I was so young. I wasn’t expecting any of this, so I didn’t take care of myself,” she says.

While healthcare providers offered treatment options and tips to manage symptoms, Matlock “didn’t follow the rules,” she says. “In hindsight, I should have done what the doctors told me to, but I was hardheaded. I was 19, and I just didn't listen.”

Her health deteriorated so dramatically over the next three years that Matlock felt “on the brink of the Lord calling me home,” she says.

While she was in the hospital for her severe symptoms, her mother had some stern words for her. “She just was like, ‘You have a child to live for. You cannot keep doing this,’” Matlock says. That experience was a turning point.

“It took me getting knocked down to realize this is not something that I want — I can't play with my life like this,” she says. Eventually, Matlock participated in clinical trials for treatments for both lupus and rheumatoid arthritis that helped her get back on track.

“I've always been a confident person, but when my hair fell out, I cried for three days,” Matlock says.

By this time, she'd tried four or five medications for rheumatoid arthritis, including an immunosuppressant, and none had worked well. Then she landed on a regimen of several medications that helped. Around the same time, she enrolled in a trial for a lupus treatment called anifrolumab (Saphnelo), and she started to feel better. “It helped me so much. I started working. I was able to go outside, because before this treatment, I couldn’t even go outside without the sun burning my skin,” Matlock says.

Keeping track of her treatments for rheumatoid arthritis and lupus can be a challenge. “Sometimes it can be tough managing my medications, and sometimes I forget to take some things,” Matlock says. But she’s come up with a system of notifications so she’s reminded to take everything on time.

Today, Matlock, 39, is a preschool teacher, living in Stone Mountain, Georgia, and her symptoms and perspective have changed dramatically. “These days, I ask a lot of questions, and I advocate for myself,” she says. “I didn’t have the confidence to do that back in the day.” For example, she’ll ask how new medications might interact with others she’s already taking or how a new treatment might affect her other health conditions.

Her monthly infusions for lupus relief have given her a more positive outlook on life and longevity, but she’s still in pain every day, and “being in pain all day and still having to push yourself to make sure you're able to survive” is a major challenge, Matlock says.

“Some days, I say, ‘Forget it!’ and just live my life, because you only live once, but most days, I can’t go outside because it’s too sunny outside,” she says. “I have my ups and downs when it comes to dealing with things. I have to remember that I’m not like everybody else.”

Some days Matlock is overcome by that unfairness. “Sometimes I cry about it, I’m not gonna lie. I cry about not being able to do what I want to do,” she says. “I’ve had so many restrictions for so long.”

Other days she feels stronger, in large part due to the example set by her mother, who has has several surgeries due to her SLE, and who also has sickle cell anemia, but still works, stays consistent with doctor appointments, and takes her medication. “If I want to see my baby have babies, I have to make sure I’m here,” Matlock says. “If it wasn't for my mother, I wouldn't be able to do it.”

Part of making sure that she’s here for the future is monitoring her symptoms and trying not to push herself too hard. To others with rheumatoid arthritis, Matlock says, “If you feel yourself getting swollen and hurting more, just take some time and relax, because it only gets worse if you keep going.”

Matlock hopes that others with lupus will educate themselves like she has. She recommends reading information from the Lupus Foundation of America, connecting with local lupus groups in your community, and pushing for the best care possible within the medical system. “Don’t be afraid to ask questions and build your confidence to advocate for yourself, because nobody is going to love you more than you love yourself,” she says.

Loving yourself means prioritizing your own care, too. “Really understand that you can’t take care of anybody else if you’re not happy and healthy,” Matlock says. So try your best to “roll with the punches,” she says, and “put you first, then everything else will fall in line.”

• If you're living with lupus or rheumatoid arthritis, taking an active role in managing treatments and advocating for your health can greatly improve your quality of life.
• Despite the challenges and symptoms that may restrict activities, finding support, such as through a local lupus group, can help promote confidence and resilience.
• Managing autoimmune diseases often involves ongoing trial and error with treatments. Work with your healthcare team to stay up-to-date on new therapies that may offer relief.