From the Archives: Summer 2009 issue of Lupus Now
In the Mix: Designing a social life around the limits of lupus
by Martha J. Frase
Jeremy Margolis, diagnosed with lupus in 2005, is single and works from home. He takes medication that sometimes clouds his thinking, and he is often too tired to stay up past dinnertime. Since his recent heart attack, going out has been a challenge because he cannot walk far and he no longer drives.
But this 40-year-old Chicago man is far from isolated. Despite limited physical capabilities, he maintains a strong network of friends and a satisfying social life. "I’m blessed in that I have always had the ability to make good friends," says Margolis, who has a Ph.D. in psychology and is a manager of behavioral research for CVS CareMark. Even people he had considered mere friendly acquaintances sometimes surprise him. "When my father passed away last year, I had to get to Detroit in a hurry. A co-worker stepped up and offered to drive me the two-hour distance the next day, without me even asking. Those are the kind of people I know."
Margolis concedes that their presence in his life may not be divine provenance alone. He is conscious of how important a positive attitude is in his situation. "People say I always make them laugh -- I’m constantly joking and I love puns. I try to stay upbeat. If I acted like a jerk, would that make me feel better? No. I’d just be a jerk with lupus."
But this maddeningly unpredictable disease, with its chronic pain and disabling symptoms, can unleash feelings of anger and guilt when it gets in the way of plans and pleasure. "It’s not easy to stay ‘up’ all the time, and that’s okay," says New York City psychologist Charles Merrill, Psy.D. "You’re not required to be happy about having lupus. You are entitled to be frustrated. But in the end, your limitations are what they are." By understanding and accepting them, he says, you can begin to build a satisfying social life that works for you.
It’s always a challenge for people with lupus to keep up with more active friends and make concrete social plans, Merrill acknowledges, but don’t use it as an excuse for not maintaining old friendships or creating new ones. Instead, focus on helping the people in your life better understand your condition and its restrictions: "Once you accept and make peace with your situation, it will be easier for you to explain it to others."
Diagnosed with lupus late last year, Christina Enkler kept it a secret at first. "I was really nervous about telling anyone, because I didn’t know how to deal with it myself," says Enkler, 41, of Poughkeepsie, NY. An active teacher, scout leader, community volunteer, and mom of two busy teens, she could no longer work through the fatigue, joint pain, and pleurisy -- painful inflammation of the membrane surrounding the lungs. And that created something of an identity crisis. "I couldn’t figure out who I was anymore. I used to be the one in charge, the first to volunteer, the one who never missed my kids’ events. That’s who I am."
But keeping silent wasn’t working, either. "I worried that people would think I was lazy or that I didn’t care when I wasn’t showing up for fundraisers or Knights of Columbus social events. But after I told a few people, I found them to be a lot more understanding than I expected." In fact, many friends went out of their way to help her stay involved in their lives. One group arranged a monthly game night and scheduled it in the early evenings, when Enkler would more likely feel well enough to play.
She soon learned to be more strategic about her social activities: "I didn’t have to reinvent myself -- just how I did things." Now, making plans includes scheduling ample rest to conserve her energy. "My friends know when I plan something with them, it was a choice I put some thought into, and I probably had to give up two other things that day to be with them."
Nurturing social relationships requires being honest about your limitations -- not withdrawing or faking it, Merrill advises. "The truth is not a bad thing. It’s not a crime to have lupus. If you have a date or make plans with friends, just let them know you may have to bow out if you have a flare. Don’t feel you need to apologize for your situation." Having a backup plan -- a friend ready to take those concert tickets off your hands if necessary -- can ease the regret of missing out.
"When you have to cancel something, the anger can get to you, but you have to step back and look at what’s best for your body," says Taryn West, 30, of Tacoma, WA. Her diagnosis seven years ago meant drastically curtailing outdoor activities with her boyfriend. "Now I have to pick and choose when I want to be outside [because sun exposure can aggravate lupus symptoms]. I still do all the things I like to do -- I just do them smarter."
West, who works as a hospital wellness coordinator, says she has developed a "let’s go for it" mentality. "I made a deal with myself that while lupus may slow me down a bit, it will not run my life."
Margolis agrees: Life is too short to hide away or feel like you don’t fit in. "Who really fits in anywhere?" he asks. "I mean, look at me. I represent at least five different minority groups -- I’m Jewish, gay, disabled, a Ph.D., a conservative. If I don’t fit in one place, I’ll just fit in somewhere else."
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