As a man with lupus, the first thing you may discover is that many people are surprised when they learn you have the disease. A lot of misinformation exists about lupus—including the incorrect belief that lupus only occurs in women.
Lupus can develop in anyone, male or female, of any age, including children, teenagers, and adults.
While we do not yet fully understand what causes lupus, we do know that having lupus doesn’t diminish a man’s levels of testosterone, ability to perform sexually, or potential to become a father. However, certain medications, such as cyclophosphamide (Cytoxan®), can affect sperm counts. Before you begin taking any medications, talk with your doctor about how they may affect you.
The second discovery you may make is that it can be difficult to find information that is specifically for men with lupus. This is because the disease is the same—and is treated similarly—in both sexes.
Guy talk: Men with lupus find, and give, support
When Thomas Walters, 56, of Atlanta attended his first lupus support group meeting in 2007, he was looking for information. He’d been diagnosed with lupus a year earlier after experiencing severely low platelet counts.
“The group was really good, very enlightening,” recalls Walters, who serves as volunteer coordinator for veterans and military families for Hands On Atlanta. “I was having my own personal physical challenges, but after listening to some of the things that other group members have gone through, it gave me a sense that I shouldn’t complain because they have gone through much worse.”
Charles Merrill, Psy.D., a New York City psychologist in private practice, believes support groups can be extremely helpful for people living with the stress of a chronic condition like lupus. “It lets you know you’re not alone,” he says.
But for Walters, there was one thing missing from his support group: other men. “When I first joined,” he says, “I was the only guy for months.”
Man to man
Seven years later, Walters still regularly attends that co-ed support group and finds it beneficial, calling it “a combination of networking and sharing information.” Last year, though, Walters decided to start something new: a support group for men. It’s called Brotherhood of the Wolf (lupus is the Latin word for wolf), and it’s one of only a few groups in the country specifically for men living with lupus.
“We’re proud to be the first male support group under the Lupus Foundation of America, Georgia chapter,” Walters says.
An active volunteer with that chapter, Walters thought it was important to connect with other men living with lupus in order to share their common experiences and offer support to one another. He’d met or spoken with several men living with lupus individually over the years, and those interactions were the main reason he decided to start the group.
“The Georgia chapter was referring a lot of guys and family members of men with lupus to speak with me. I would receive calls from all over the state. They had challenges, and they wanted to find out what was going on or get some clarity about certain medicines and side effects.”
Walters realized a lot of men weren’t comfortable talking about their experience with lupus in a co-ed setting.
No longer alone
“One of the issues that I discuss is the isolation, because how men deal with lupus is different than how ladies deal with lupus,” Walters explains. “There are a lot of guys who feel like they have a female disease, and that is kind of humiliating.”
J. Christopher Reed, 39, has been living with lupus since he was 16. A charter member of Walters’ group, he enjoys the social aspects of Brotherhood of the Wolf. “Being with a group of guys who understand the stigma of having a ‘woman’s disease’ lessens the tension and the loneliness,” he says.
Rick Csoltko agrees. He’s been running the men’s support group of the LFA’s Greater Ohio chapter for 20 years. “When you talk to other people with lupus, it makes you feel better that you’re not the only one with it. That’s a real good thing. [It] makes your morale higher. A lot of people think they’re the only ones with it, especially men.”
Psychologist Merrill advises that there’s rarely an advantage to dealing with anxiety surrounding a chronic illness alone. “Sharing your worry and stress with others helps reduce the stress,” he says.
Learning to share
Support groups provide people with an important network to rely on when you need it most, Merrill says. “It’s easier to call on them because they’ve been through it, and they understand it. They have their suggestions on symptoms or problems that come up, because they’ve had to develop their own coping strategies. You can benefit from their experience.”
Men represent about 10 percent of people with lupus, according to Robert Lahita, M.D., Ph.D., chairman of the Department of Medicine and vice president of the Newark Beth Israel Medical Center in Newark, NJ. “In general, the differences that we see are minimal, but the literature suggests that young males have much more severe vascular disease and much more severe kidney disease,” he says.
Jon Connor, 39, of Manassas, VA, thinks a men’s support group would give him the opportunity to learn how others deal with their symptoms and would help him cope with the challenges his lupus presents.
“I’m in a business where I come into contact with people all day long, and I have to put on a smiling face, and I’d like to know how other people do it,” Connor says. “How do you put on a happy face when you feel like you have a broken ankle? How do you deal with the quality-of-life issues that come about every day? It would be nice to be around people who are dealing with the same issues.”
Brotherhood of the Wolf has about 18 members, and it doesn’t work like other support groups, Walters says. “We decided that we wouldn’t meet every month, but we would keep in touch by cell phone, by email, and with phone conferences,” he says. “We’ve had formalized group meetings four or five times since we started, like at sports bars, restaurants, and a couple of times at the hospital. Most of the guys who are involved with the group are still working, so one of the challenges is trying to coordinate everyone’s schedules.”
Despite not meeting frequently in person, the group is very active. They field a team for the annual lupus walk, and they’ve had teleconferences with doctors. They are also considering an outing to a sports event and to a sci-fi comic book convention.
“The guys talk about family experiences and their own personal issues,” and they find it easier to relate to other men, Walters says.
Csoltko says a lot of the members of his group also find it easier to talk to other men about more than just lupus. “You get to know the guys, you feel comfortable, and when you get a certain group of guys, you can talk about any problems, not just lupus problems,” he says. “Men don’t like to talk in front of women when they talk about certain men’s problems. They feel uncomfortable about that.”
Tristan Depalobos, 32, finds Brotherhood of the Wolf a welcoming environment to discuss issues like doctor visits and body changes. “We’re straightforward with questions and answers,” he explains. “For example, talking about weight to men is OK, while with a woman, you could be pushing buttons that you shouldn’t be pushing. Co-ed groups are nice, but being in a men’s support group is more exciting because we can do manly events, like go to a sports bar and have a few drinks, and just be open to any conversation without any boundaries.”
Depalobos adds, “We’re more than your typical group. We’re brothers of different ages, colors, shapes, and sizes.”
Expanding the brotherhood
Walters hopes the success of Brotherhood of the Wolf will encourage other men around the country who are struggling with lupus to network and get involved. He’d love to see the group expand, and he wants to create a subgroup for teens and younger men.
He believes it is important for men living with lupus to realize they’re not alone and to be able to find all the information and support they need to help them live with lupus.
“It’s my hope that groups similar to ours will develop around the nation and serve as a source of support for men who struggle with lupus,” Walters says. “The number of men diagnosed with lupus is growing. Those who suffer from this devastating disease need to know that they are not alone and that others will be there to support them if they need it.”