What Makes You Stronger: How Black Women Lead Full, Happy Lives While Fighting Lupus5/25/2015
by Anna Gibson A few months after her son’s birth, Starlisha Brim was diagnosed with lupus. The ...
by Anna Gibson
A few months after her son’s birth, Starlisha Brim was diagnosed with lupus. The mother of a three year old lives in Detroit, Michigan and studied Broadcasting at Specs Howard School of Media Arts. The 24 year old explains that before she was diagnosed with lupus, she knew something was wrong. “I was like a robot waking up without oil,” she says. “My joints would be so achy I couldn’t extend my arms.”
According to the Lupus Foundation of America, 1.5 million people deal with the disease. Lupus symptoms include fatigue, severe joint pain and rashes that break out on the skin. According to Minority Nurse, black women are three times more likely to get the illness and begin to manifest symptoms at a younger age.
Since there’s no known cure, both sufferers of the illness as well as the people close to them often have a hard coping with the strain. Because of this, friends and lovers may become distant from the sufferer. “I’ve lost some friends because of the things I couldn’t do,” she says. “I even had a significant other tell me that they couldn’t take care of me for the rest of my life, so they left.”
Starlisha did not allow these setbacks to define her. She found ways to live her life on her terms and ultimately come out on top of her illness. “You have to stay positive,” she says. “Make sure you embrace every aspect of your illness, even the butterfly rash.”
The butterfly rash covers the cheeks and the bridge of the nose and closely resembles a butterfly. The breakout happens with 40 percent of lupus sufferers and is the only aspect of the illness that outwardly indicates the painful reality of what occurs inside the body. This rash and other syptoms of the illness require self care.
“If you want to care for yourself, there are a lot of things you can do,” Starlisha says. “Bubble baths are your friend. I take them all the time. Get yourself some Epsom salts and soak, it’ll definitely help with the joint pain.”
In addition to joint pain and the butterfly rash, two-thirds of people with lupus struggle with hypersensitivity to the sun. While it’s true that they may have to pay attention to time spent outside, they can still have fun with their family and friends.
Starlisha explains, “I remember going to Cedar Point once. You can go outside, just make sure you take lots of breaks, and drink lots of water. After that, manage the time you spend outside and you should be fine.”
According to Starlisha, there are still things that you can do even when you have to stay inside. “If you do find yourself in the house because you’re having a bad day, find one of the online groups with people that have Lupus,” she says. “There are resources on Facebook and Instagram that have helped me.”
Starlisha is an example of a woman who’s turned her illness into a form of strength. Given the diversity of experiences women the disease encounter, it’s important to recognize that many women have varied experiences with the illness.
Salaama Milligan is a 42-year-old woman who also suffers from Panniculitis lupus. She’s from New York, but currently lives in New Jersey. She was diagnosed with lupus in 2010 and like Starlisha, she hasn’t allowed her illness to put a damper on her spirit or positivity.
She explains how she first learned that she had lupus. “Since no one in my family had it, I didn’t know how it happened to me,” she says. “In February 2010, I’d discovered I had a bald spot the size of a dime. I didn’t think much of it because I’d recently been divorced the month before and thought it was stress related.”
Unfortunately, like in Salaama’s case, symptoms often go untreated early on. In a study, the National Lupus Patient Registry (NLPR) found that in addition to the peak risk of lupus occurring earlier among black women, a higher proportion also developed severe or life-threatening complications of lupus, such as neurological or kidney disease, including end-stage renal disease. They recommend health care providers who work with black women be aware of the importance of screening for early signs of lupus, in particular kidney disease.
On the following 4th of July, Salaama was at the beach and got a horrible rash. “When Labor Day came around, my whole body broke out. This time, it was l0 times worse,” she says. “Later, I went to the dermatologist because I’d lost a dime size of hair. When I’d explained the rash, she tested me for lupus and that’s when I knew.”
The illness affected every aspect of Salaama’s life but she has managed to remain healthy. “I actually do hot yoga. I find the warm room and flowing movements helps ease the pain and loosen my joints,” she says. “Also, make sure you have a great team of doctors that believe in getting you better. Get a second opinion from a doctor if you aren’t comfortable with your first diagnosis.”
Lupus can take a toll on you both physically and psychologically. Sometimes you may be down and out. “It’s important that you be very gentle with yourself…Honor your illness. Honor what you can or can’t do. Celebrate your victories and most importantly, celebrate yourself,” Salaama says.
Keeping a positive outlook, sustaining close-knit community and maintaining the will to succeed has helped both Starlisha and Salaama lead full and happy lives.
“It’s not a death sentence. Lupus is what you make it,” Starlisha says. “You can either look at it as a burden you carry, or as a rock that makes you stronger the longer you have it on your shoulders.”
Anna Gibson is a student at Wayne State University who’s currently pursuing Bachelors in Journalism. She’s a Buddhist and spends most of her time advocating for people shunned to the margins of society. If you want to see more of her (and honestly why wouldn’t you?) You can catch her on Twitter @TheRealSankofa or on Facebook, where she’s hiding under the name Introspective Inquiries.