When Jason first joined the Man Cave, a virtual Lupus Foundation of America (LFA) group for men living with lupus, his camera and mic were off, he didn’t participate in the discussion and he left early after 30 minutes.
It was disheartening to see for Kevin Vaughn, a lupus advocate since his diagnosis in 2015 who facilitates LFA’s men’s support group, since he makes a point of allowing space for everyone to have a voice.
However, Jason returned for the next meeting. And after hearing another participant share their story, he turned on his camera and opened up about his own struggles with depression and the impact lupus had on his life. Even after Jason’s recent passing, Vaughn still remembers when the Zoom square came alive.
“It’s in those moments where I see people get permission to not be okay while they’re with us,” Vaughn said.
Vaughn’s lupus journey began with joint pain, especially in the elbows, that limited his arm mobility. After suffering from swollen ankles and extreme pain, Vaughn visited his primary care physician, who suspected lupus and confirmed it through lab tests, resulting in an unusually quick diagnosis.
On average, it takes nearly six years for people with lupus to be diagnosed, from the time they first notice their lupus symptoms. Additionally, as 90 percent of people are women, men get diagnosed at a later age.
In a study that analyzed cardiovascular and renal outcome in male systemic lupus erythematosus (SLE) patients, researchers found that men were diagnosed at a median age of 44.4 years, compared to women at 33.1 years.
Not only do men get diagnosed on average later than women, for Dr. Gary Gilkeson, MD, the associate dean for faculty affairs and faculty development at the Medical University of South Carolina, one of the main misconceptions he encounters in his practice is that most men are not aware of what lupus is and often ask why they have a woman’s disease.
Initially, Vaughn didn’t fully grasp the seriousness of the condition and delayed seeing a rheumatologist for about two years. It wasn’t until a flare caused him to be hospitalized that he became more proactive, which included improving his diet and taking the disease more seriously.
“If you’ve been newly diagnosed,” Vaughn said, “get proactive. There are symptoms that we deal with that are universal, but each individual manifestation of this disease is unique. It’s important to immediately get to work on getting connected with care providers, rheumatologists, nephrologists, dermatologists, whoever you can to start to really get a hold on what your situation is, specifically what medications you might be able to take.”
Medications are particularly important as studies have found that men tend to be at greater risk for renal complications.
When looking for a community after his diagnosis, Vaughn found a flier at a Starbucks promoting a support group for people with lupus in Carson, California. However, Vaughn felt somewhat isolated because most of the attendees were women.
“Getting support and being in a room with other people that really understand the experience is huge for a lot of reasons,” Vaughn said.
Attending the Man Cave support group helped 49-year-old Richard McComb, who was diagnosed with lupus in 2020, feel validated in his struggles by connecting him with others who shared similar experiences.
“I was glad I attended the support group because it gave me a sense of direction in what questions I should ask at my doctor appointments and also what new treatments and medicines are being tested,” said McComb, who initially had difficulty sharing his diagnosis with friends and family. “It was also a breath of fresh air knowing that I’m not the only one dealing with this mysterious disease.”
Joining a support group is also one of Dr. Gilkeson’s first recommendations for those recently diagnosed with lupus.
“I encourage [patients] to become members of the lupus organizations to learn and help with patient-oriented activities,” Gilkeson said.
A lupus diagnosis can profoundly affect many aspects of a man’s life, from sense of identity and mental health to the way one engages with loved ones and the broader community. While lupus is often considered a “women’s disease,” men must navigate a unique set of physical, emotional, and social challenges—often in silence.
“Most patients with lupus look healthy, so some family members and coworkers may not understand that lupus leads to significant fatigue and brain fog,” Gilkeson said. “How an individual patient deals with this depends on their other support and how much they want others to know they have lupus.”
To cope with a drastic life change, men often recede and choose to hide their diagnosis. But according to Vaughn, doing so can be a disservice to one’s self.
“It’s imperative that you lean on people’s humanity in hopes that they’ll fall in line with what’s going on,” Vaughn said.
That instinct to retreat resonated with McComb, who said he tried to bury his fears but couldn’t escape the constant battle within. This often left him wondering if he was not the same person he had always been.
Lupus can alter not only one’s sense of self but also the rhythm of daily life. From needing help taking out the trash to struggling with something as simple as opening a pickle jar, Vaughn found himself unable to perform routine tasks — an adjustment that challenged his independence and reshaped his role within his family.
Still, for Vaughn, a husband and father of three, one of whom will head to college in the fall, practicing self-compassion and openness has been key to navigating life with lupus.
“Embrace the reality of where you’re at and have conversations about what’s going on,” Vaughn said. “Say ‘I’m gonna press and do the best that I can and try not to beat myself up too much on the instances where I can’t live up to whatever the standard of the day happens to be.’”
Authored by:
Ian Decker
This blog post and the lupus resources found on the National Resource Center on Lupus are, in part, supported by the Centers for Disease Control and Prevention under Cooperative Agreement Number NU58 DP006139. The contents are solely the responsibility of the developers. Points of view or opinions do not, therefore, necessarily represent official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.
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