Private Moments
Q: "I was diagnosed with arthritis a few months ago. I have been noticing that my 'need' for sex has decreased over the past year. Does this have to do with the disease? Or is it just me?"
A: No, it's not "just you." The disease itself doesn't cause loss of desire, but the physical strains and emotional stresses that come with it can wreak havoc on sexual needs, ability and satisfaction.
If fatigue thwarts your desire, try planning your sexual encounters in advance. This isn't as dispassionate as it sounds. Remember how excited you used to become in anticipation of a special date? Then save your energy for your "date." Take a warm, relaxing bath or shower, as a prelude or even as part of foreplay. Light scented candles. Play mood music. Turn on the electric blanket and warm the sheets. "But don't try to have sex when you're tired," says community health educator Judith Seifer. "You're setting up yourself [and your partner] for disappointment."
Perhaps depression is the source of the problem. The disease itself doesn't cause depression, but the changes it forces into your life can. If this sounds like your situation, talk with your doctor. Antidepressant medications and/or counseling may be in order.
Even some common arthritis medications may contribute to sexual difficulties and disinterest for both men and women. Antidepressants, glucocorticoids such as prednisone, muscle relaxers and other drugs can affect sex drive and the ability to have an orgasm, ejaculate or get an erection.
If you've experienced any of these changes in desire or response, review your medications with your doctor. Don't assume you must choose between effective medication and a satisfying love life. Your doctor may be able to adjust your dosage or switch you to a less inhibiting drug. Don't wait for your doctor to ask. Take the initiative, be direct and specific. Say, "Since I began taking this drug I can't have an orgasm." Or "I just don't have the desire I used to have. I don't even get a full erection."
Q: "Could having sex cause flares?"
A: No. Rheumatologist Michael Belmont, MD, says some people may experience a day or two of increased pain or stiffness following sexual activity -- just as they might after participating more vigorously than usual in an event of any kind. But you should be reassured that this is a temporary symptom and not a flare. If you have swelling, redness or tenderness in and around one or more joints for a week or longer, then you may be experiencing a flare. In that case, it's important to consult your doctor.
Q: "How will joint replacement affect my ability to have sex?"
A: If your hip or knee joints have deteriorated to the point that replacement is your best option, then there is a good possibility that the new joints will improve the quality of your life -- including sex. In most cases, you will have less pain and better mobility than you did before the operation. People who found sexual relations difficult before will usually find they can assume more natural positions after joint replacement, but they will still have to take some precautions.
During the six weeks following surgery, you'll need to carefully pay attention to your surgeon's instructions so that your new hip joint doesn't dislocate while the muscles and tissues around it are healing. If you have a knee replacement, you will not be able to kneel until the stitches and tissues on the front of your leg heal.
After that, artificial knee joints are pretty sturdy, although you may still prefer positions that avoid pressure on knees, such as making love on your side, on your back, or even in a chair. A man with knee replacements can try embracing his partner while seated in a sturdy rocking chair, letting the chair provide the motion.
Artificial hips are sturdy, too, but still require long-term protection that may affect your choice of lovemaking positions. After hip replacement surgery, modify your positions as you would for any other activity: Choose positions that do not cause you to sit with your knees raised higher than your hips; do not let your knees touch each other; and do not allow your foot and leg to roll inward.
Q:"Good grief! With all my joint limitations I'm ready to give up sex altogether. Can you help?"
A: Well, whatever you do, don't give up. With a little patience and creativity, you can find a number of ways to make lovemaking enjoyable again. Carolyn Dodge, who has RA and speaks to young adults with arthritis about sex and sexuality, has learned this by listening to those who have attended her seminars. "The wonderful thing about the seminars I do," she says, "is to listen to all these people talk about the creative things they've done with sex. I hear this from people who've had total hip replacements and from those who can't open their hands or jaws much.
"If you use your mouth, your palm, the back of your hand, feathers, or any kind of fun, creative tool, you can be aroused and you can arouse your partner. "It's not so much that you have to be performing the way a TV show tells you. It's about finding the way that works for you," she says.
"If we start to tap into what's easy for us, making the most of what we've got, we can get as creative and crazy as possible, and that makes it that much more fun. Our greatest sex organs, as they always say, are our minds."
When experimenting with positions or new ways of lovemaking, allow plenty of time. And don't expect graceful, by-the-book perfection. Expectations make sex a performance and can lead to performance anxiety.
Q:"Intercourse itself has become painful and I don't know what's causing it."
A: If you're a woman and you have rheumatoid arthritis, lupus, Sceleroderma or another autoimmune disease, you may also have Sjögren's syndrome, a condition that can occur simultaneously. Symptoms, in addition to dry eyes and mouth, can include reduced vaginal lubrication, which can cause sexual intimacy to be painful. Several antidepressant medications can also lead to vaginal dryness. Menopause, too, may be playing a role. In that case discuss the benefits of estrogen replacement therapy, which can restore natural lubrication, with your doctor. No matter what the cause of dryness, try one of the new over-the-counter lubricants like Astroglide, Replens or Slip. They can work wonders, according to Seifer.
Vaginal yeast or bacterial infections -- a problem for some women on prednisone can also cause irritation. See your doctor to be sure you're getting the appropriate treatment.
Q: "Because of my gnarled, knobby joints, I'm embarrassed by my body. I worry no one would want me sexually because of how I look. I don't want to be alone! How do I deal with this?"
A: You're not the only one who feels this way. Did you know that studies have shown that most women are embarrassed about some part of their bodies? We all worry and want to be accepted. Having arthritis can magnify those fears.
To improve the likelihood that you will be attractive to people, you need to find a way to feel good in your body. That will help you feel good about your body which, in turn, will make you more attractive to others.
Remember, "Sexuality is energy more than it is physical appearance. It's an energy that warms, excites and attracts," says Rainer. "The better you feel in your body, regardless of your disease and your physical appearance, the more of your own sexuality you'll experience."
Find a way to enjoy your body, he advises. "Often that means getting up in the morning and just appraising yourself in a friendly way. Do things that appeal to your five senses. Light candles. Enjoy a nice dinner. Take a bubble bath," he says. "Get flannel or satin sheets. Wear clothes that are comfortable. Get some type of exercise that helps you feel as though your body can move to its limits."
Exercise does more than increase muscle tone. Keep in mind one reader's story. She wrote to say that exercise did more for her than she could have imagined. She says, "For a long time my sexual feelings were frozen because of pain, fatigue and the physical changes my body was going through." She joined a fitness center and within six months, "I became physically stronger, mentally more alert, and able to enjoy my sexuality much more. People say to me, 'You look great!' It must be the sensual look which is now thawing out and becoming a part of my life again. I love it!"
If you can't manage the weights and machines at the gym, do your exercise in warm water, advises Carolyn Dodge. It was an Arthritis Foundation Aquatics Program class that first set her on the road to mobility and self-acceptance when she was a teenager.
"The big sex secret most people don't understand is that when you're having a day that you're really turned on to yourself, that's when you're going to be more magnetic to others," Rainer says.
Q:"How could I possibly believe that my guy won't sexually stray from me when an able-bodied woman would always have more to offer him physically?"
A: "That is a chronically ill woman's worst fear," says Rainer.
Behind that fear, says Dodge, are the thoughts that I'll always be alone and no one can ever want me, and that an able-bodied woman can do so much more for a man than I can. The experts point out that some men with chronic illness worry about the same thing. These fears aren't exclusive to one sex or the other."
This requires a very, very tender conversation," says Rainer. "You need to take your worst fears to your partner and say, 'You know, I'm really scared. I really am worried,' and ask for the reassurance that is necessary. Most times, you'll get it, and if you don't, then better that you have that information sooner rather than later.'"
To help with unreasonable fears -- those that won't go away despite sincere reassurance -- find fulfillment within yourself, says Dodge. Find outlets for your talents and interests: a theater group, an art class, a choir. Constantly asking for reassurance can be a turn off.
Consider, too, that a partner who is going to be unfaithful may do so whether you have arthritis or not. Blaming your illness may obscure the real reason for the infidelity - that you are with a person whom you cannot trust or that the relationship is not a solid one. Couples can have problems whether or not arthritis is in the picture. You may want to find a good counselor to help you and your partner sort out these issues.
Q:"I feel that arthritis has robbed us of our sex life. It has been so long since my wife and I have made love comfortably that I hardly know how to get started. Any suggestions?"
A: The best way to begin to reawaken your romantic lives is with your clothes on, sitting together at the kitchen table, says Rainer. "My favorite four-letter word for intercourse is 'talk,'" he says.
He suggests these fill-in-the-blank phrases to get the ball rolling: "I feel loved and cared about when you . . . " and "I used to feel loved and cared about when you . . . ." Your answers should be short, sweet and concrete. For example, "I feel loved and cared about when you let me read the front page of the paper first." Or "I used to feel loved and cared about when you brought me flowers."
The third and last phrase, says Rainer, is "I would like for you to . . . . "Use the answers to create a "caring list" for each other, made up of 20 small actions your partner could take to make you feel loved. Exchange lists and agree that every day, or every week, you will each choose a different item to do from your partner's list. As you begin to feel appreciated and loved again, you'll probably feel ready to move to the bedroom for the sensate focusing exercise described in the article "Sexual Healing."
Seifer suggests a walk down memory lane. "The kinds of things that you paid attention to when you two were courting each other are pretty important," she says. "How long has it been since you've just sat and kissed? Or curled up together on a couch so that the person with arthritis was comfortable? That's the way most sex therapists introduce people to intimacy again.
"Don't touch to get each other turned on; don't let her touch you because it's been six months and she knows you're frustrated Touch for the pure pleasure of it," she says. "That other stuff will come. If you ever were excited by one another, if you ever were overwhelmingly in love with one another, you can always recapture that. . . and what better time than now?"
Q:"How can I help my partner understand that pain doesn't always mean 'no,' it just means 'carefully?'"
This is another topic to be addressed at the kitchen table, when you are not in a sexually charged situation. Your partner may be better able to understand that your pain level varies from day to day, hour to hour, and even situation to situation, if you use a scale of one to ten.
"Pain is such a subjective experience," says Rainer. "If your only choices are 'yes' or 'no,' that's a scale of 1 to 2. On a scale of 1 to 10 you've got lots more room to negotiate." You have the framework to say: I'm a 2 today, let's go for it! Or, today's a 7 but I'd love to stroke you and kiss you. Or tonight is a 10; let's just lie side by side and listen to some music.
The sensate focusing exercise can also help you communicate with your partner about what's possible or painful for you at any given time.
Q:"Does an orgasm really release amounts of natural cortisone? Or is my husband just teasing? I know one feels better after sex. Is this why?
A: It's not cortisone that makes people feel good after sex, it's the body's own natural painkillers, endorphins. At orgasm, says Seifer, the body experiences the same kind of endorphin surge that causes a "runner's high," and those endorphins could very well alleviate or at least distract you from your joint pain. The effect can last anywhere from 45 minutes to three hours.
Q:"Sexuality has been a difficult area to deal with. Who can I talk to?"
A: Your doctor is really the best place to start. "Your doctor may be focused on the primary aspects of your disorder and probably will not ask every time he sees you about how your arthritis is affecting your sex life," Dr. Belmont says.
"So don't be afraid to speak up and say, 'Well, by the way, doctor . . .' You shouldn't be bashful. The doctor's office is not a place to stand on ceremony." Raise your sexual question as a primary concern when you visit the doctor. Lead the discussion when your physician says, "OK, how's it going?" You can say, "My biggest concern is I don't have the desire I used to have."
"We may not always have the answers," says Dr. Belmont, "but we can refer you to an appropriate source for help such as a gynecologist, sex therapist, a counselor or an orthopedist if it's a question of joints."
Whatever your sexual concerns or physical challenges, continue searching for ways to express yourself sexually. Remember, you do not have to stop living a full and satisfying life just because you have a chronic disease.
Carolyn Dodge acknowledges that having arthritis or a related condition creates unique emotional and physical concerns in every aspect of life. "I don't mean to be flippant, but sex is the easy part," she says, laughing. "All of us can figure out ways to make it work, if we have a partner we can trust and talk to openly, one who has a sense of humor and who is willing to have a go at it."
