It’s unpredictable, insidious, and currently incurable: Lupus affects approximately 1.5 million Americans, 90 percent of whom are women aged 15 to 44, with black women three times more likely to be affected than their white counterparts, according to the CDC—and reportedly, more severely. The chronic autoimmune disease can affect almost any organ in the body, with debilitating, and occasionally, even fatal results.
And yet, due to its broad range of symptoms, lupus goes largely unseen by those not suffering from the disease. With the exception of discoid lupus, in which symptoms manifest on the skin (h/t Lupus Foundation of America), many suffer in relative silence. It’s a silence patients, doctors, and advocates alike are hoping to break with initiatives like Glaxo Smith Kline (GSK)’s Us in Lupus program, which has been partnering with Sephora and NARS Cosmetics for “Night of Beauty” events around the country to empower and inform Lupus sufferers.
“People don’t understand, because they don’t see lupus like people see other diseases,” says Illinois resident and “Lupus Warrior” Tawny Smith, who was diagnosed with lupus 14 years ago, just a few years after donating a kidney to her father. Smith will be joining GSK and NARS to co-host Sephora’s Chicago event on Michigan Avenue on Tuesday, April 16. It’s the fourth in a series of similar events, which launched in Atlanta with subsequent stops in Washington, D.C. and Philadelphia.
“If you don’t have discoid lupus, you don’t wear lupus on the outside. So you can’t see the internal pain that people have when their joints ache. And you can’t wear fatigue,” Smith tells The Glow Up. “So, it’s perceived as the person is just being lazy, and they need to ‘push through’ or ‘man up,’ and [are told] ‘you don’t look sick.’ … [People] don’t see it, so they don’t understand how bad the person feels on the inside. And it’s often difficult to communicate, because you’re so tired; you have no energy.”
For Smith, even early diagnosis didn’t prevent lupus from disrupting her life, both as mother to a then young son and a nine-year career as an associate television producer. Plagued by extreme fatigue and joint pain, she became alarmed when she could no longer keep up with her customary multitasking lifestyle.
“Before I was diagnosed, I literally ached from the balls of my feet to my neck,” Smith says. “I just started to notice it was a challenge for me to keep up; I was always exhausted. It’s literally feeling like all of the energy in your body is just drained, and I could never get enough sleep. I never felt rejuvenated. And that was a big red flag for me that something was wrong. … I was juggling a lot of different things, and that had never been an issue for me in the past, so why I was struggling to maintain scared me, and I knew something was wrong.”
Though the CDC and Lupus Research Alliance report there is no single diagnostic test for lupus, Smith was lucky enough to be accurately diagnosed soon after experiencing symptoms. Most are not so lucky; the average lupus sufferer takes six to seven years to receive a correct diagnosis, during which they can experience symptoms ranging from the fatigue and arthritis-like symptoms Smith experienced to rashes, sores in the mouth or nose, hyper-pigmentation, hair and tooth loss, organ scarring, brain and spinal cord function, and severe pregnancy complications.
“Even though I see people with lupus every day, medically, we can only try to understand it,” Dr. Meenakshi Jolly, a Chicago-based rheumatologist and Professor of Medicine and Director of Rush Lupus Clinic, Rush University Medical Center, specializing in lupus. “But [for] people who suffer with the condition, I think nobody can truthfully understand the depth [of the] effect it has on them.”
Dr. Jolly, a researcher and practitioner, is emphatic that no two Lupus [patients] are alike. “The disease can affect anything, from top to down and inside out,” she tells The Glow Up, explaining that the immune system becomes overactive in people who have lupus, essentially mounting a fight against the body itself. For the 20 to 40-year-old women predominantly affected, the impact on social and emotional health can be especially debilitating, especially at an age where many women are building families and careers. Dr. Jolly even sites a higher rate of divorce among lupus sufferers (statistics supported by Oxford University Press), as many aren’t emotionally equipped to deal with a partner’s chronic illness.
“Simple things that you do with hands, we take for granted; being able to open a bottle, writing, lifting something. Young people in that age group are taking care of kids sometimes—basic things like being able to take care of children, change a diaper, those kinds of things can be affected,” Dr. Jolly says.
Tawny Smith further drives home the impact of a lupus diagnosis, which forced her to take an extended hiatus from work until she assembled a support system and regimen that enabled her to live with lupus. Eventually, she was able to launch another career path in a much slower-paced government position.
“It has been life-changing,” Smith says. “I never would’ve imagined that I would have the career that I have now. Even though I do enjoy what I do, it wasn’t the plan I had for my life in my 30s.”
How can a “Night of Beauty” help? By reminding lupus sufferers that they’re not alone—there are tools at their disposal to help them maintain confidence and community, like UsinLupus.com,
“The Night of Beauty concept was born out of a desire to help women of color, who suffer from lupus 2-3x more than Caucasian women, feel more confident and empowered to have honest and open conversations with their healthcare providers about their symptoms and experiences,” says Carla Pearson, VP, US Specialty Marketing at GSK. “After our GSK research showed that women of color living with lupus wanted more information on self-care, we recognized that need and collaborated with global beauty brand NARS Cosmetics to create a night of empowerment in local communities, featuring information from lupus experts, self-care tips and personalized makeup consultations.”
Night of Beauty events are designed to combine inspiration and empathy; Lupus Warriors, their family and caregivers alike are given the opportunity to connect with others while receiving makeup tips and consultations with artists from global beauty brand NARS Cosmetics. Reminding us that depression, anxiety, and poor body image are all common issues she sees among her patients, Dr. Jolly says activities like a Night of Beauty are therapeutic when it comes to treating the emotional components of the disease and empowering those living with it.
“I think this is a beautiful opportunity that Sephora and NARS representatives are [offering] lupus patients; one-on-one services and advice on how to apply, what to apply, [and] where to apply for the best results,” she says, adding, that while the cosmetic aspects are optional, the community is invaluable.
“If you can provide a forum where people can come together, look at each other and get inspired [by] each other—as well as get some tools to learn how to be able to present oneself, if the need is there, in a safe way that doesn’t harm your skin—you know, it’s a win-win situation,” she adds. “We are empowering people and getting the word out about the disease.”
For Smith, bringing more attention to lupus is the first step in garnering more support and understanding about what it means for an individual living with it.
“It takes time, but there is support in the lupus community,” she says. “Once they’re diagnosed, I understand that they’re scared, they’re probably depressed and anxious. But there is a support system and a community within lupus, and it’s not the end of the world; they can live with lupus.”
The Glow Up tip: “A Night of Beauty” with GSK and NARS will next take place in Chicago’s Sephora on Michigan Avenue, April 16 from 6:00-9:00 p.m. Attendees can connect with Lupus Warriors and experts about the importance of self-care and get firsthand tips from beauty experts on how to navigate cosmetics while coping with lupus. You can learn more about Us in Lupus here.