Q: I am recently developed a disabling condition, and my spouse is uncomfortable being sexual with me. I’m afraid that we’ll never have a sex life again, or that he might become unhappy in the marriage if we can’t make love. I still feel very sexual and love him very much, and want to explore what my disability really means to my sexuality. What can I do to help him make this adjustment?

A: It is not unusual for a spouse to have a difficult time adjusting to their partner’s acquired disability. In some ways, it is more difficult for him. You have your internal understanding that your sexuality is still intact, that it’s a part of you that needs expression. You know how your disability affects your body. You have no choice but to face the adaptation to your self-image, and have obviously made considerable emotional adjustment to your new identity. Your partner has none of these orientations, so the adjustment process is different—and will be slower and more work—for him.

There are a number of common reactions people have in his position. It may be difficult for him to identify them at this point, much less express them, so hopefully some of the following will serve to open up discussion so you can work through his resistance together. All of these, I believe, can be overcome with time and honesty.

He might feel that you are frail and be afraid of hurting you. Especially in the heat of passion, he might imagine he’ll lose track of his intensity and do something too aggressive that could injure you. Our culture equates disability with frailty, so it would be natural for this to be his first assumption. But, for example, people with spinal cord injuries heal and are not about to just break in half any more than anyone else. Whatever physical sensitivity might be associated with your disability, the two of you can become familiar with your true limits—which are probably further out than he thinks—and respect those boundaries so you’ll be safe.

Some partners are uncomfortable seeing the effects of disability on the body of their partner—be it muscle atrophy, scarring from surgery, or the presence of urinary catheters. Given that we are all victims of the commercial portrayal of idealized bodies, it might be difficult for him to accept how your body has changed. The more you are comfortable with your own body, unafraid to reveal it—maybe even indulge in some fascination with how the body changes and adapts—then the sooner he can get used to your “new look.”

He could be feeling guilty, thinking that other matters involving your disability are more important, and that sex should not be the priority. Maybe he is afraid that having sex with you would somehow be taking advantage of you. Maybe he wonders if your interest in being sexual is about trying to deny your own disability issues when you should be focusing on recovery or continued therapy—in his mind at least. Of course, nothing should preclude your being sexual if you have the desire.

Often the hierarchy in the relationship changes, especially if your partner is doing personal assistance tasks for you. The shift in power can become confusing. Roles—and actual sexual options—have to be redefined, and that is a stressful process. Especially if you’ve been together for a long time, having established a certain style of sexuality in your relationship. Is he holding on to wanting it to be “the way it used to be?”

People who play a personal assistance role for their partners—especially one involving support with bowel and bladder activities—find it difficult to switch hats and get into a passionate space after completing these tasks. Some people treat assistance as a kind of foreplay, time them so they don’t happen immediately before intimacy, or make a point to get outside help on days when you plan to be sexual. To the degree that you can, plan for sex!

Unfortunately, the appearance of a disability in a marriage can sometimes reveal an underlying weakness in the relationship. It’s easy for any couple to allow issues to hover in the background, until a trauma of some sort forces them to the surface. Perhaps it’s a problem with communication, or an unresolved resentment from a previous situation. In order to address the issue of sexuality and your disability, it might be necessary to clear the air of some other stuff first.

If the two of you are unable to express and discuss these questions, perhaps you should seek the assistance of a counselor. Whereas “therapy” has been stigmatized in the past as being for people with a “problem,” in truth it is an important tool that helps people get through situations like this. When things have piled up a bit, it’s hard to gain a perspective on your own. That’s what a professional counselor is trained to do.

While it’s true that some partners of people with recent disabilities leave their relationships, it’s equally true that many couples find their bond has been made deeper, stronger, and more spiritual. By discovering the capacity they have to make these adjustments, and by seeing that their commitment to each other is not based on their bodies but their love, their devotion is deepened.

I hope you can be patient with the time it will take, and that the two of you can find a way to do the hard work of talking about these things, reach an understanding, and take the gentle steps he might need to test the waters of your new intimacy.

Responses are by noted author, speaker and recreational juggler Gary Karp, whose books include Disability and the Art of Kissing.  Karp has been honored by induction into the Spinal Cord Hall of Fame as a disability educator. Find out more about Karp at Modern Disability.

Copyright 2007, Gary Lawrence Karp