When singer Muni Long isn’t blessing us with timeless hits, she’s struggling with lupus pain behind closed doors. The chronic autoimmune disease causes flare-ups that affect each person differently. For the 36-year-old, symptoms sometimes show up in her skin, she told PEOPLE in an exclusive interview.
“[People with lupus] have little signs, right? Like my fingertips will start turning blue. My skin will get really pale,” Long says. “I’ll start looking super white. Which is hard to imagine because I’m brown-skinned. But literally my skin will turn like a light, ashy color.”
Around 1 in 250 Black women will develop lupus during their lifetime and will experience it more severely. While Long can manage some flare-ups and still go about her daily life, some disrupt her entire schedule.
“I recently had to cancel my college football playoff performance on Jan. 18th because I had a flare-up due to some personal things,” Long explained.
The two-time Grammy winner has also had to take preventative measures to ensure her Lupus doesn’t negatively impact her ability to sing. When the singer joined Chris Brown as an opener for his 11:11 tour last summer, she had to take some measures to prevent her symptoms from taking over.
“Please turn the air off when I come in the building. I’m not being a diva, but literally if I get too cold, I start coughing and I won’t be able to sing,” Long shares. “And then when I get off stage, I have to lay down immediately and wrap up in covers and steam my voice.”
Despite being a celebrity, Long faces similar challenges to other Black women regarding the healthcare system. Black women often face significant health disparities relative to other racial groups. That can range from receiving unfair treatment to being ignored when bringing up issues around pain or discomfort.
“As a Black woman, when I go to the doctor, they never listen,” Long said, when asked how lupus affects her day-to-day. “They don’t believe you. So it’s hard to tell them, ‘Hey, I’m in a lot of pain.’ They’re like, ‘OK, cool. Go get this blood work.’ “
She continued, “I’m like, ‘OK, but that’s going to take you like a week [to get the results back.] I’m in excruciating pain. Is there anything you can do?’ And then it just becomes a thing of like they put down on your chart [something] like, ‘Oh, you’re asking for medication.’ It’s just so, so hard navigating with the way that the health care system is set up.”
For now, the Made For You singer focuses on managing her stress levels, as that can trigger her flare-ups.
“The thing for me is I really have to just not allow people to stress me out, which is hard because people get on my nerves,” Long says, with a laugh. “So the best tool that I have is just staying relaxed and not doing anything I don’t want to do. We do our best to make sure that kind of stuff doesn’t happen and before I step into a space, I can be as comfortable as possible.”
Other celebrities who have been open about their lupus journeys include Toni Braxton, Nick Cannon, and Snoop Dogg’s daughter Cori Broadus.