Sexuality and Arthritis

Sexuality and arthritis is an issue that often gets lost in the urgency to diagnose, control pain and manage medication and therapies. Health-care professionals do care, but the subject is like a minefield that everyone involved tiptoes through, hoping not to offend sensibilities or personal values. It isn't enough to simply hope that every patient has a solid personal relationship with his or her lover and can be creative about managing the sexual problems that can come with arthritis. That happens for some people, but if the disease continually erodes the ways in which people normally express themselves and no help is forthcoming, for whatever reason, the results can be destructive for even the most previously capable lovers.

Imagine not being able to run your fingers through your partner's hair. That's something so simple, yet for some so painful to the fingers, that every caress is a nightmare. Your partner may wonder why your caresses have become so rare-do you no longer feel the same urge to show affection? If he or she asks about it, the discovery that this simple but powerful connection actually hurts may raise the question, all too often unspoken: What else hurts?

Interviews with people who have arthritis reveal that an inability to communicate about sexual matters creates a gulf between partners, even if it's only because of misunderstanding. The thought that lovemaking may actually hurt the one you love may well begin a retreat from intimacy. And, as the 'well' partner earnestly tries to determine how his or her spouse with arthritis is feeling-when would be a good time for sexual intimacy, in other words-spontaneity disappears.

The problem is, if you wait for 'just the right time' for intercourse, you risk confusion, rejection and failure. Over time, the person with arthritis may lose her sense of being a 'complete' sexual partner. Then, as the limits imposed by pain gradually worsen, what was once a loving, active relationship can weaken or even come to an end.

That kind of misfortune is all too common. If the couple had been prepared for the possibility that they could have problems, they might have made appropriate adjustments sooner, not only to physical realities but also to emotional insecurities that keep them from enjoying their sexuality in spite of the arthritis. After all, it's only human to want to be everything to the one we love, and compromise can be easily mistaken for failure.

Consider the story of Marie-Claude (not her real name). She was just shy of 20 when she was diagnosed with rheumatoid arthritis. Her condition slowly worsened over the next decade, and right from the beginning of her illness she felt there was 'something to hide.' If pain and stiffness prevented her from walking normally, she'd explain it away as new shoes or a mildly sprained ankle. 'If you're ashamed of your illness even before it shows, imagine what it's like when you're severely disabled,' says Marie-Claude, who now uses a wheelchair. The arrival of the wheelchair roughly coincided with the moment her long-time companion chose to leave her. 'The wheelchair was only a pretext,' she says. 'Over the course of several years, I could see that he wasn't looking at me in the same way, that he no longer had the same desire.'

Marie-Claude believes that most people with arthritis have powerful desires, perhaps because they don't always have the physical capacity or the necessary energy to make love, which only amplifies their needs. And even when you do have good sexual relations, she says, 'arthritis can cause no end of frustration. You may want to reach out and touch your partner in an affectionate way, but even that small gesture can be so painful, you hold back.'

At age 40, Marie-Claude still hopes to meet a man sensitive to her needs, but any optimism is tempered by a dark realism: 'I'm so badly handicapped now that I'd be embarrassed at the prospect of a romantic interlude.'

Consider, on the other hand, a bride of just two weeks, waking up with a badly swollen wrist. The doctor takes tests and tells her and her new husband that she has rheumatoid arthritis and must be admitted to hospital immediately. That's how Gail began her marriage. Unlike Marie-Claude, though, Gail's mate, Terry, hung in, and for 33 years they've made Gail's arthritis a family concern. They've stayed together and successfully raised two sons.

It wasn't always easy. At first, Gail says, she was an emotional wreck and wondered if she should tell Terry that he was free if he wanted, because she was devastated by what was happening to her body and terrified of what lay ahead of them: Thirty years ago, there were few treatment options for rheumatoid arthritis, and Gail's doctors were forthright about the course her disease was likely to take. Her mother, wisely, told her that she had married a good man who meant it when he said, 'for better or worse.' She advised Gail to invest her energy in building their new life together.

What followed were years of flare-ups and surgery. The only relief was pregnancy, which Gail describes as 'heavenly' because she went into temporary remission each time. But after the birth of each child, her arthritis would flare again, worse than before. The emotional pain of not being able to care for her children was crushing, but speaking of it now Gail sounds almost in awe of how they stuck out the bad times and even managed to have fun doing it.

Gail was lucky: She had a knowledgeable and empathetic rheumatologist who made sure Gail thoroughly understood what was happening to her body and what managing the disease would require of her. With the help of doctors, therapists and a social worker from The Arthritis Society, every aspect of living with arthritis was explored.

The fact that Gail had only been married for two weeks touched the hearts of everyone; it also gave the social worker a perfect opportunity to open a discussion on sexuality. Gail certainly had doubts about having a 'normal' sexual relationship. The prednisone 'moon-faces' of other patients in the hospital frightened her, and she worried how her husband would feel if she reacted the same way to treatment. 'I looked at crooked hands, bent bodies and pain-pinched faces,' she recalls, 'and the future that lay so beautifully ahead of us just a few weeks before looked grim.'

Gail's normally positive attitude was sorely tested, but she respected the advice of her social worker and made a point of not keeping anything from her husband. They decided that they'd make the most of the good times and handle the bad times as they came-together. 'He was as good as his word,' says Gail, 'and I can honestly say he's never let me down.'

Gail has had surgery several times to correct the deformity in her hands. She can still drive and was able to continue working for some time. 'It wasn't, and still isn't easy,' she says. 'Our marriage has definitely benefitted from the communications skills we developed in the beginning. Couples must communicate, particularly about their sex life. He never made me feel uncomfortable about my body, and I could laugh at myself. That's so important. The arthritis was-and is-serious, but we continue to work our way around it every day, and we're stronger for it.'

A major difference in the experiences of Gail and Marie-Claude was education-for them and their partners. If, like Gail, you have an empathetic doctors or therapist, they'll be alert for any small opening that lets them enquire, with sensitivity, if you're having difficulty with their sexuality. If they don't take the initiative, and you're having difficulty, try broaching the subject yourself. If the doctor or therapist doesn't feel equipped to handle the situation, he or she may be able to refer you to a counselor who is. Keep in mind that there's a lot at stake: your sense of self-worth, your wholeness as a person, your respect for your own feelings and those of others-not just your ability to have intercourse.

Don't let your sexuality suffer because of arthritis, and don't be put off if you run into a therapist who isn't on the same wavelength. If you and your partner aren't comfortable with your therapist, find another therapist who understands, and let that person help you to find new confidence in your total sexuality.

This page was last reviewed/updated on : 05/30/2008