SCI Forum Reports
Sex and SCI: The Personal Side
January 3, 1995
Our discussion panel included men and women with SCI and their husbands, wives, and sexual partners.
"Before my injury, I think my relationships were primarily sexual," said a 37-year-old single man with tetraplegia. "Now, they're based on friendship and trust. Now I feel more vulnerable...this is the first time I've been rational about trying to find somebody. I'm interested in a life partner."
A woman with paraplegia who was injured at age 16 said she was inexperienced before her injury, and fear was a large part of the post-SCI dating experience for her. "I dated for 6 years, and I found that the most important thing for the sexual experience was communication. And that goes for able-bodied people, too."
Another woman with paraplegia agreed. "A big fear of mine was, how was I going to deal with my bladder (while having sex)? Now I know that you do it by going to the bathroom before and after...but I've found that people are really very accepting if they really care about you."
"You do lose spontaneity," the first woman added. "You have to plan."
"It's tough, because you want to be spontaneous and let the sparks fly, but you've got to get your physical stuff in order," said a man with paraplegia. "Sex after injury is the great unknown--you don't have a clue how long it's going to stay up." When informing his girlfriend what to expect if she had sex with him, he said, "I let her know that, physically, this is the package you're getting--the bowel, the bladder, the works. Take it or leave it."
"I took it," his girlfriend said. "I was shocked and surprised, but I overcame it."
"You have to be with someone you can feel comfortable with," the man said.
"You find yourself in a teaching role," said a woman with paraplegia. "You have to be comfortable, and make (your partner) comfortable. When in doubt, use humor--it's a good default, when you're uncomfortable. It's really healing."
The wife of a man with tetraplegia said she finds fatigue more daunting than bowel and bladder accidents, especially since the couple became parents. "There's a lot to do when you're disabled, and you're tired." Her husband agreed: "You've got to take the chair apart, and get undressed...after all this, are you still in the mood?" One audience member commented wryly that fatigue "doesn't get any better as (your children) get older." "Have sex a lot before you become a parent," advised another.
The woman said one way she and her husband have coped with fatigue is to prioritize the demands on their time carefully. "Part of it is just lowering your standards," she said. "Yard work, cleaning--maybe it doesn't need to get done."
"You continually have to let go," agreed a mother with paraplegia.
Another woman married to a man with tetraplegia said, "It wasn't until about a year ago that I started feeling sorry for myself about missing all the sexual things that I can't do any more." She talked to her husband about it, and "we both started working harder on our sexual relationship, which was not bad to begin with."
"You need to continue to revisit the issue," said a woman with paraplegia. "Keep the communication going."