by Carl and Pattie
One of the first victims of chronic illness within a couple is sexual contact. Yet we have found that making love can help reduce pain, in addition to its other rewards. "Temporarily" having to suspend sexual activity usually makes us grumpy with each other and generally makes us feel like the illness is winning. After almost 15 years of having sex while at least one of us has been chronically ill, we've got some thoughts on the subject we think you might find useful.
When chronic pain is an issue, the first enemy of sex is fear. The fifth season of the old sitcom, "Dharma and Greg," found wife Dharma badly injured from a car accident and husband Greg taking the role of caregiver with his characteristic thoroughness. The second episode centered around the first time the couple were able to make love after the surgery. Greg cannot do it because of his fear that he will hurt Dharma (or as she puts it, "you're afraid of totaling me," just as the car has been totaled). The most telling part of the episode is his response to her moans. He cannot tell if she is moaning in pleasure or pain and, of course, his solicitousness leads him to believe every sound is a sound of pain.
Fear of hurting the other partner leads to a less-than-desirable outcome from intimacy because making love should be a moment of complete abandonment of inhibition. If the response to the other partner is fear, then neither feels safe enough to let go and enjoy the experience. Mutual attention to the other's pleasure cannot be achieved through second-guessing and distrusting signals. Worries have little place in the bedroom.
Yes means yes and no means no is key to trust.
But fear can only be discarded in the presence of trust, and trust can only be achieved through honesty. When one person is not able to make love because of pain or fatigue, he or she should be able to say so without fear that the other will interpret this as rejection. The worn adage, "yes means yes, and no means no" has never been more important. In order for each partner to be able to trust the "yes," each must respect the "no." In order for that trust to exist, it is important that neither plays any games with this clarity.
Using the "no" for manipulation can create distrust. Saying "yes" when it probably isn't a good idea can also create distrust.
Recognizing that even in the midst of this kind of honesty the other person is going to have feelings of rejection is also important. Even after years of this kind of honesty, a "no" can leave the other partner feeling vulnerable. Approaching another person with love and attention, essentially saying to someone, "I want you" is a sacred ritual that puts your heart in the hands of the other. So lovingly saying "no" is also paramount.
This exchange of fearlessness and honesty cannot be taken for granted. Each time it must be done with sensitivity and with vigilance. It is much easier to tear apart this bond than it is to create it. It is even harder to reestablish it.
The sick partner cannot assume that the other partner should "just know" that they are sick or in pain. Resenting the overture can also lead to fearfulness and distrust.
Finally, it is okay to say "I don't know" and to explore. Pain is elusive, and one can't always know if making love will help or hurt until one is making love. But to keep the trust, each partner should be able to say "stop" at any point in the process. The other partner must be able to rely upon the one in pain to say "when" so that they can proceed with abandonment in the absence of that feedback.
Perhaps these things are good in any long-term sexual relationship. Respecting each other just makes sex more fun. Fear in any relationship can take the fun away. Honesty in the bedroom is usually the best policy. Guiding each other to know what works and what doesn't becomes a great adventure.
Making love is always a balance of pleasure and pain. But we have found that chronic illness intensifies these aspects of long-term relationships, making it even more important to find that common ground. However, be assured, we have also found that when we've achieved that balance, the "work" is definitely worth it.