As a musician, rapper, recording engineer, and composer, Skrill-Dilly (née Andrés Kemp), 29, is used to marathon recording sessions, frequent travel, and a physically demanding lifestyle. There was a time when you couldn’t keep him away from the strip club. If there were dollars to be tossed, a party to be turned out, or bottles to be popped, he had to be involved.
Everything changed in 2011, when prolonged flu-like symptoms—coughing, sore throat, swollen lymph nodes—prompted a hospital visit, which led to a positive ANA (antinuclear antibodies) test. Thirty vials of blood and a rheumatologist visit later, he had an answer: mixed connective tissue disease (MCTD), which has symptoms and signs of other connective tissue diseases like lupus, scleroderma, and polymyositis, an inflammatory disease causing chronic muscle pain and weakness. He was diagnosed with lupus three months later.
Corey Townsend, a social media manager, 29, says his lupus also began with flu-like symptoms. Describing himself as a “sickly child” who had meningitis while young, he thought nothing of the aches, pains, and exhaustion until they intensified, with newly swollen joints. He noticed a rash on his face, a known symptom of lupus, that spread to other body parts, and never seemed to have enough energy. Naturally, this made his adjustment to Washington, DC (his new home after moving from Jamaica) quite the adventure. He was formally diagnosed in 2009.
Lupus is especially dastardly because it’s an autoimmune disease that causes one’s overactive immune system to attack your skin, body, and organs the same way it would normally fight bacteria and viruses. It affects everyone differently, has no cure, and can affect every organ. It’s big fun.
Ninety percent of those with the disease are women who typically develop the disease between the ages of 15 and 44. Like disenfranchisement and harassment from racist jerks on the eve of a Trump presidency, lupus affects Black, Latina, Asian, and Native American women significantly more than white women. There is no clear consensus on why, but many experts point to environmental factors over genetic ones.
“There is no definitive answer, but the disparities are sometimes exacerbated by socioeconomic issues, like living in poorer communities and not having access to adequate care,” says North Carolina-based rheumatologist Manika Zeri.
As menfolk, Townsend, Skrill-Dilly, and I make up that other 10 percent of lupus patients. Nick Cannon, television mogul and former Mr. Mariah Carey, is another part of that 10 percent. According to Zeri, while women are affected more often, lupus in men tends to be more severe and have greater organ involvement.
Though symptoms present the same in men and women, Zeri says, the difference in frequency between the sexes is often attributed to hormone imbalances.
“What you will often see is female lupus patients with really high levels of estrogen, and men lower levels of testosterone and more estrogen than normal.” Zeri explains. “There is definitely a spike in cases among women during their childbearing years, so we believe there’s a connection.”
A definitive cause of lupus has yet to be identified.
Like most people I speak to about lupus, Townsend and Kemp both say they have really good days and really bad days. A life with active lupus is a life of unpredictability, bound by limitation. You can wake up with great intentions and oodles of energy, but as Townsend says, “Your day can start off really well then go left really quickly.” Joint aches and pains, lethargy, nausea, migraines, numbness and shortness of breath are but a few of the craptastic things those with lupus face.
“It’s a daily struggle. I’m still taking steroids. Still taking painkillers like Vicodin and Oxycodone. And Plaquenil to regulate the disease… I type a lot. My joints get stiff easily, so I can’t stay seated—in the office or in the bathroom—too long, or my legs will freeze up and get numb,” Corey explains. “It’s like teaching myself to walk all over again. I have to get up and move around every ten to 15 minutes.”
Another concern for Kemp is the lack of male representation in the lupus support community. Gender doesn’t affect his treatment, he says, but it does affect how he’s perceived. Because most people with lupus are women, he’s heard “I’ve never seen a man with lupus or MCTD online” more than few times.
“Online, the lupus and MCTD community is comprised mostly of women and when they ask for help or input or anything else,” Kemp explains, “they always say ‘Lupie sisters’ or ‘spoonie sisters’ and it does make me feel left out.” While their community isn’t some kind of exclusive club, this exclusion of men often leaves them feeling ostracized, without the hope that a support system can provide.
Townsend’s worst flare happened two years after his 2009 diagnosis when his body went into shock after his kidneys stopped filtering toxins properly. A close friend found him passed out on the floor of his apartment and he was rushed to the hospital, where he remained unconscious for a few hours, and was then hospitalized for three days. That unforeseen trauma was a necessary kick in the ass: “I wasn’t taking care of myself. It was a wake up call to take care of myself and take this disease seriously.”
That episode also exemplifies one of lupus’ countless shitty byproducts: strained relationships.
“You cancel things. You don’t always have the energy. Sometimes, they judge your abilities and what you should be able to do, comparing themselves to you,” Townsend says. “They think because they have energy, and I’m young, that I should be able to deal. You hate to be seen as a flake. It’s hard.”
Watching a loved one or close homie lose their vibrancy, go from fine to fucked up overnight, or endure chronic pain is understandably difficult. It proved to be too much for one of Townsend’s close friends, who was ultimately unable to deal with the weight of being supportive for a friend with a chronic illness.
“My sickness was too much for him to deal with. It was emotionally difficult for him,” Townsend says. “It’s really hard for some people to support a friend who is as sick as I was.”
For Kemp, the diagnosis and its attached stigmas also made dating a challenge. He’s faced a good amount of rejection from women once they learn of his medical condition. One woman even felt the need to play doctor (not in the good way), telling him that he has a chemical imbalance and therefore must be bipolar.
Once, an actual doctor he was interested in declined a date, telling him, “I deal with that all day at work. I don’t want to come home to deal with it.”
Worse than that was losing his fiancée over his health. Engaged and adjusting to a new baby, the brutal, volatile nature of his combined illness pushed their bond to the breaking point. Even his fiancée’s two children were more helpful than their mother, who grew to resent his condition.
But a good support system makes all the difference. During previous lupus flares, Townsend’s friends went with him to chemotherapy sessions, picked up prescriptions for him, and swooped in to lift him up when needed. But his biggest supporter and cheerleader is his sister, with whom he can talk about anything and helps him cope.
Kemp’s family is making the effort to educate themselves about the disease and how they can best support him. His younger female cousin was recently diagnosed with lupus, which inspired more relatives to research and get on board.
His biggest motivation, though? His daughter. They recently went to Chuck E. Cheese two weekends in a row, for about nine hours each time. Despite knowing he’d have to stand most of the day, he gave her 130 tokens and didn’t think twice about it.
“I was in so much pain. I was down for about four days afterwards, but it was worth it,” he says. “How many times can you ride a teacup in a circle? I don’t know but if it makes her happy, cool.”
Author: Andrés Kemp
This article is published with permission by the author, and was originally published in Tonic, VICE’s health.