For years, attorney and novelist Chloe T. Barlow, 36, was dogged by unexplained red and white blood cell disorders, sun sensitivity, and severe skin rashes and skin ulcers. At one point, doctors thought she had leukemia. So when she finally received a diagnosis of lupus in 2009, it came as a relief.
“The biggest struggle was before the diagnosis,” says her husband, Zak Thomas, 39, also an attorney. “That led to treatment, which led to her getting better. I think we gained more than we lost from the diagnosis.”
It can be hard for spouses to see their loved one in pain and be unable to offer a fix.
After doctors confirmed lupus, Barlow struggled with side effects from her medication—and her appearance at times. But Thomas always told her she was beautiful. And supported her.
It can be hard for spouses to see their loved one in pain and be unable to offer a fix. But you have to accept what you can and can’t change—and do your best to manage both. “I learned to control the things I can control,” Thomas says. “I’m not a guy who talks about emotions and things like that often. But I had to learn that if I was going to support her, I needed to participate. The person with lupus needs to be given the space to talk about it.”
“She’s doing a good job of helping me enjoy life more—and showing us how precious the time we have is.”
“I think the first year after knowing it’s lupus is the hardest,” Barlow recalls. “You have to change your life.” Some changes brought joy.
To accommodate Barlow’s sun sensitivity, for instance, the Pittsburgh residents traded their beloved beach trips for jaunts to area museums—and Paris. They recently celebrated their 13th wedding anniversary. And though Barlow has some bad days, the two are happy.
She’s doing a good job of helping me enjoy life more—and showing us how precious the time we have is.
“I’m incredibly proud of the way she’s fighting,” Thomas says. “She’s doing a good job of helping me enjoy life more—and showing us how precious the time we have is.”
Successful coping as a couple
A lupus diagnosis can unite a couple or pull them apart, depending on how they deal with stressors, including those related to finances and intimacy, explains Francine Rosenberg, Psy.D., a clinical psychologist in New Jersey. But certain actions can increase your ability to cope.
Be open to professional help. “I would strongly recommend psychotherapy for any couple who finds that their struggle with a serious medical issue is impacting the quality of their relationship,” Rosenberg says.
Have fun when you can. “This could be enjoying a cup of coffee in the morning, watching a show together, or going for a walk when possible,” she adds.
Communicate. “Most importantly, talk openly about the challenges and acknowledge the losses that have occurred,” Rosenberg says, adding that couples should discuss any financial strains and acknowledge each other’s efforts. “Just the act of sharing and validating each other’s feelings can create a sense of intimacy that helps a couple manage the crisis more effectively.”