Our 20s is a time filled with potential. Dream jobs and the promise of independence and adventure seem just over the horizon. For Alyshia Merchant, that horizon felt as if it was pushed out of sight. In 2012, at 23, Merchant was diagnosed with a strain of lupus that specifically targeted her kidneys. From the time of that diagnosis, a range of debilitating symptoms racked her body.
“I carried around 40 pounds of painful edema – or fluid – in my feet and legs, rashes everywhere and a swollen round face from the high dosages of steroids prescribed to suppress my immune system,” says Merchant.
According to the National Institutes of Health (NIH), symptoms of lupus can be wide ranging and can ultimately appear similar to other diseases. However, lupus is an autoimmune disease, which essentially causes the body to attack different vital parts including the skin, heart, brain, among others. Aside from her physical health, lupus also eroded Merchant’s self-esteem. “For the first time in my life, I was insecure.”
According to Merchant, she chose to pursue chemotherapy after a bout with acute kidney failure. The treatment served as a positive step in managing her symptoms. Years into her own journey with the disease, Merchant decided that she wanted to push back against lupus, while empowering others to do the same. Merchant, along with her sister, in 2015 founded Making Lupus Look Good (MLLG).
“I decided that I wanted to focus more on making a difference in the community I live. MLLG is dedicated to empowering women that are suffering silently with the many insecurities that the lupus battle may bring.”
Considering the many physical symptoms that robbed Merchant of her positive sense of self, she knew she wanted to find ways to help women continue to feel beautiful. That desire directly ties into the programming of MLLG. The initiative helps provide women the “full glam experience,” which includes makeovers, wigs, skin care and photoshoots, which are all complimentary to the patient.
Just a few years after Merchant’s initial diagnosis, Tina Wagner would be diagnosed in 2016. “I believe the hardest part is knowing that I had to leave my ‘old life’ behind,” Wagner said. She recounted how she’s had to cancel plans with friends, put off quality time with her husband, and even struggle through playtime with her nephew due to “bad lupus days.” Wagner says, “I felt like a ghost in my own life.”
Fortunately, Wagner’s outlook on her circumstances shifted drastically when she joined MLLG. She felt like she had people who finally understood the agony she thought she was bearing alone. Due to the relative rarity of the disease, Tina says it was two years after her diagnosis that she met another “Lupus Warrior”, before joining the group. To have people actually see and understand her pain was a relief, according to Tina. She says that often, many symptoms of lupus can go unseen or be “invisible” and therefore feel less acknowledged.
Merchant echoes that sentiment saying that living with the invisible symptoms of lupus is like contending with the resistance you would feel by walking through a swimming pool.
“I wish that people had compassion for those living with ‘invisible’ illnesses. We are not faking being sick. We aren’t asking for approval from society, our friends, or even our family. We are doing the best we can, and we would love compassion from others,” Wagner says.
Despite her hardships, Wagner is embodying the message MLLG is fostering. While she says that she and others do not mind how they look while bedridden, looking beautiful and feeling womanly are still important for morale. “We are the prettiest sick people anyone’s ever seen,” she says.
Although many of the members of MLLG are women and beauty in the midst of illness is a large part of the organization’s goals, Merchant assures that MLLG serves anyone affected by lupus. However, according to the NIH, lupus is primarily found in young women. Furthermore, African American women are three times more likely to be diagnosed with lupus than white women.
While looking good is both in the name of the group and is a pillar of MLLG’s mission, Merchant points out that perhaps the most important aspect of MLLG is the recently formed Survivor’s Circle Lupus Support Group. This is a space where women such as Wagner can share their stories and help carry the burden with others who understand.
“When I was first diagnosed, I could not find any local support groups, in which I could find hope and sanctuary. My passion is to be that sanctuary for fellow lupus patients in Roanoke and surrounding areas,” Merchant says. Unfortunately, lupus survivors cannot always make it to the sanctuary of MLLG. In an effort to meet survivors where they are, MLLG and community members take part in “Lupie Love.” This branch of MLLG helps those experiencing extended hospital stays by making their rooms feel more like home with toiletries, entertainment and other essentials.
Through their “Adopt-A Patient” program, MLLG collects various items for “Lupie Love.” A few of those items include activity books, feminine hygiene products, hand sanitizer and other basic toiletries.
Merchant says on the more glamorous and fun side, MLLG plans to hold later this year a community supported masquerade ball known as “A Night of Passion,”
Over the years the quality of life has increased for lupus survivors. Unfortunately, though, it seems the greatest advancements in the field have pointed toward earlier identification of lupus and treatment intervention, rather than an outright cure. “Yes, it’s a long journey adjusting to everything that lupus throws your way. I know firsthand how alone it can feel. But you now have something in this community that I didn’t. A family of survivors right here,” Merchant says.
The Survivor’s Circle is held every second Saturday of the month at the Hampton Inn and Suites Downtown Roanoke.