Reasons for that include lupus flare-ups, pain, fatigue, side effects from medication, and self-image issues. And that's on top of the day-to-day responsibilities that come with having a chronic illness, as well as the routine tasks of life.
But don't give up on your sex life. There are things you can do to make it more satisfying and keep that part of your relationship alive.
For many people with lupus, fatigue is the biggest roadblock to a healthy sexual relationship.
More than one-third of lupus patients have reported a decrease in desire for sexual intimacy, according to recent research conducted by Meenakshi Jolly, MD, medical adviser to the Lupus Foundation of America and director of the Rush Lupus Clinic at Rush University Medical Center in Chicago.
Nearly half of the women in Jolly's study avoided sex because of lupus-related flares and up to 40% felt that their relationships were negatively affected by their disease.
“Patients with more active disease had more decline in their sexual drive,” Jolly says.
"It's not like the desire isn't there, but the energy isn't. They want to do it, but physically, they can't bring themselves to," says social worker Jillian Rose, program manager of the Lupus Line/Charla de Lupus (Lupus Chat) programs at the Hospital for Special Surgery in New York.
Of course, many people with lupus are also dealing with the same responsibilities as people who don't have chronic condition. And that can put their sex life on the back burner.
“Most fatigued women with lupus try to figure out how they'll do everything they need to do - especially if they have children - and sex goes to the bottom of the list,” says licensed marriage and family therapist René Jones of Amherst, N.Y., who counsels many lupus patients and their partners.
Pain, Dryness, and Sensitivity
Lupus-related pain and sensitivity can be an issue in the bedroom. For instance, having sex in the missionary position gives some women with lupus hip pain. Others have vaginal dryness or very sensitive skin.