Singer Muni Long shares her journey with lupus

Singer Muni Long is sharing details about her journey with lupus.

What is lupus?

Systemic lupus erythematosus, commonly known as lupus, is a chronic autoimmune disease, according to Mayo Clinic. It occurs when the immune system, which typically protects the body from infection and disease, attacks its own tissues and organs.

Muni Long on her lupus journey

In an interview with People, Long 36, shared her struggles with the chronic autoimmune disease, including how lupus flare-ups affect her.

“[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.”

According to the Lupus Foundation of America, a lupus “flare” or “flare up” is when your lupus symptoms worsen and you feel ill as a result.

Before performances, Long ensures her room doesn’t have the air running, which could result in her coughing and prevent her from singing.

She also expressed how after performances, she has to immediately lay down and steam her voice to preserve it.

Navigating the healthcare system

According to the Lupus Foundation of America, the disease disproportionately affects Black women, who are three times more likely to develop lupus than White women. As many as 1 in 250 Black women will be affected by the illness in their lifetime.

The singer, who was diagnosed with lupus in 2014, told the outlet about her challenges navigating the healthcare system.

“As a Black woman, when I go to the doctor, they never listen,” Long begins, when asked how the illness 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.’ ”

“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.”

How she manages the diesase

Long says she manages the disease by trying to remain stress-free. Stress is one of the biggest triggers in causing lupus flares.

“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 said. “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.”

Read more about how lupus affects Unheard Voices family.