From the Archives: Spring 2006 Lupus Now magazine
Staying Close: When a mate has lupus, keeping intimacy alive takes special care
by Emily Wojcik
After two decades together, Lynda Michelson and her husband, Mark Buckley, still seem like the perfect couple.
"It's the love affair we had in college," says Lynda. "We say, 'Can you believe we're really here?'"
When Lynda was diagnosed with lupus in 1999 after 17 years of marriage, she and Mark found themselves facing a new challenge: the strain of chronic illness.
A chronic disease affects both partners in a relationship in many ways, but rarely is intimacy on the list of topics discussed either at the doctor's office or at home. Lupus symptoms can make sexual closeness difficult -- if not painful. Treatment for the disease can also negatively affect intimacy, while the psychological adjustment often makes couples anxious or depressed.
A 2004 article that appeared in the international journal Lupus revealed that women with lupus abstain from sex at higher rates than healthy women. They also reported more gynecological problems, lower sexual functioning, greater depression, and poorer body image than healthy women.
"The stakes feel high because a lot is on the line," says Cory Silverberg, co-author of The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain and Illness (Cleis Press, 2003). He adds that for people with chronic pain, the emotional, physical, and spiritual joy of an intimate relationship can "flow into other parts of life." If you feel loved and desired, Silverberg says, "it can make it easier to face another doctor, another day at work."
Lynda agrees that a satisfying bond can make the difference between living with lupus and merely coping. "Mark is the reason I get up and go," she says. "I know I have his support."
Lupus poses special obstacles to sexuality. Brooke Knox was diagnosed with lupus after her son's birth three years ago, and says, "I started to feel older and less sexy. Now, I can feel great when I wake up, but as soon as I see hair on the floor it all goes to pot."
Lynda says her facial rash affects her appearance, and both she and Brooke experience fatigue and joint pain. Brooke says her husband finds her attractive but her own feelings are complicated.
"When I'm symptom-free, I feel happier, sexier. When I'm achy, we aren't likely to be intimate," Brooke says.
According to Silverberg, her feelings aren't unusual.
"When you're tired or in pain, the kinds of intimate activity that used to work may not anymore." Negative responses by one partner can be misinterpreted as rejection, or translate into low self-esteem and depression.
Silverberg suggests taking time to learn how your body has changed. Keep a journal of how you feel at different times of the day or week and schedule "dates" for the energetic times.
"The best part of journaling is you become aware of what's going on," Silverberg says. He also suggests taking time alone -- away from your partner -- to explore your body. "Make a 'sexual blueprint,'" he says. "See what feels good, where it hurts, and take that information to your partner."
When you're in the mood, Silverberg recommends taking a bath or shower together. Heated water soothes swollen joints and relieves Raynaud's phenomenon -- a common overlap condition with lupus in which the blood vessels constrict.
Couples should also try different positions or sexual aids to help body response, Silverberg recommends. A strategically placed pillow can remove pressure on painful joints, and practicing gentle warm-up exercises or taking an anti-inflammatory medication (as recommended by your doctor) an hour before sex may also help.
If oral or vaginal ulcers make intimacy painful, ask your doctor to prescribe an antibiotic and/or steroid mouthwashes and creams. Sjšgren's syndrome can also make lubrication a problem, so Silverberg recommends a water-soluble, natural lubricant. Test some on your wrist for skin sensitivity. (He suggests avoiding KY Jelly, which can dry easily, as well as oil-based products such as petroleum jelly that can weaken latex condoms.)
Medications taken to relieve the symptoms of lupus affect intimacy, too -- dampening libido or, as with steroids, leading to uncomfortable gains in weight.
"I'm on prednisone and I'm 30 pounds heavier," says Lynda. "When Mark tells me I look great, it really helps." To help maintain a healthy weight, try a low-impact exercise routine together, which will demonstrate a commitment to staying fit.
If intercourse is impossible, redefine intimacy. "Both partners should put their needs on the table by saying, 'Sex may be different from before, and I need you to be patient with me,'" Silverberg says.
The key is to be open to compromise. If the idea of 30 minutes of sexual activity is too much, think smaller. A recent article in the National Women's Health Report Online says touching your mate just 10 times a day helps keep the passion in a relationship. It could be anything from a kiss to a caress, but the understanding is that this is not going to lead directly to sex. It's just a way of physically connecting with one another.
Let's Talk About It
Physical symptoms are only half the story: Mentally adjusting to a chronic illness can be an entirely different obstacle.
"I feel guilty," says Lynda, who describes her lupus as one long flare. "All these dreams we had are gone and I feel like I'm taking them away."
Mark adds that they had to change how they thought of themselves. "We're not the 'Mark-and-Lynda' that we were," he says. "Lynda has this situation that I'm powerless to help." So, he says, "We researched the heck out of it. It wasn't just for Lynda. I didn't want the distance between us to grow so huge we couldn't see each other." Mark also joined a support group, which gave him reassurance and access to people going through similar issues.
The two of them also began communicating more frequently. "I call her every day if she's at home or work, so she knows I'm thinking of her," says Mark. Lynda agrees. "Mark goes out of his way to be romantic, which makes me feel like 'old Lynda' again."
They are one of the lucky couples. For many, conversation often ends in the bedroom. "I think men feel like sex is their responsibility and if intimacy suffers it means they failed," says Brooke. "I'm still looking for ways to open up my husband's and my communication on the subject."
"We're not raised to talk about sex, but with a disability, everything changes," Silverberg says. "You can use that opportunity to articulate your needs." He says it's tempting to focus only on the partner with lupus, but you should "check in" with the healthy partner as well. "If you're the one with lupus, remind your partner that if something hurts, it's not a rejection of them. Let them know you're aware of their needs, too."
It's also a good idea to consider counseling if you're having trouble communicating with your partner. Look for a therapist who will work with you as a couple. Both the American Psychological Association (www.apa.org) and American Association of Sex Educators, Counselors, and Therapists (www.aasect.org) offer directories of therapists around the country, as well as other resources.
Adjusting to chronic illness can be difficult and you should expect significant changes. With a commitment to work through the tough times, it's possible to maintain a strong relationship.
"We promised 'in sickness and in health,' and this is our new way," says Mark. "The time we have together has a whole new significance and we are committed to that."