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Sexuality After Stroke
By Rowena Alegrķa
Twenty days before his wedding date in 2002, Norm Friederichs had a stroke. He was 65. He wound up paralyzed on the right side and couldn't speak a word. Yet he walked out of the hospital under his own power six weeks later.
“That's why I decided to go ahead and marry him,” said his wife Kate of Norm's determination.
In the weeks before the rescheduled big day, the Minnesota man walked around the house practicing the words that would unite him with Kate. “I do. I do. I do.”
The team of healthcare professionals that supported Norm during his recovery were also there for him at the wedding. The hospital chaplain, who had offered comfort during the toughest days by saying, “You two are married in your hearts,” officiated. Norm's speech therapist went to the beautiful backyard wedding just to hear Norm say the words. Yet no one talked to him about how the stroke would affect his wedding night — and his love life. “We had to be inventive,” Kate said, in dealing with Norm's limitations.
Norm added: “We figured it out ourselves.”
The Friederichs are far from alone in encountering sexual issues after stroke. For many people, sex just isn't the same afterward. A recent survey by National Stroke Association found that one in five stroke survivors said stroke had affected their sex life.
Since so many are affected, one might think healthcare professionals would be ready with advice. But that's not the case.
Judi Johnson, a nurse, consultant and 15-year stroke survivor, teaches StrokeWise classes that include information about sexuality. She always asks her students whether anyone on their medical team had discussed sexual concerns with them. Of more than 200 students, Johnson said, only two have ever said yes.
“No one ever talked to me about it,” Johnson said. But “everybody needs love and needs to be able to love others.”
Love making, although only one part of sexuality, can pose a real challenge for stroke survivors, who often report decreased desire for sex as well as a drop in sexual relations.
The physical challenges often presented by stroke tend to play a large role. For example, paralysis can cause positioning issues. “And for some, there's (only) one right way,” Johnson said.
Others have no feeling in certain areas. “Think about foreplay,” Johnson said. “If people don't have that same sensitivity, obviously it would have an impact.”
Still others have urinary problems that prompt fear of an accident while making love.
And intercourse sometimes increases spasticity (stiffness or uncontrolled jerking). “That's frightening for some people,” Johnson said.
Fear, for both stroke survivors and their partners, is another problem. Some are afraid that the strain of sex might cause another stroke, which has never been proven valid, Johnson said. Others are afraid of causing their partner pain.
“It's awkward,” said Jim Baruch, whose wife, Joan, had a stroke in March 1999. “Mostly I'm afraid I'm going to hurt her.”
“Even though I tried telling him, 'Look, I'm fine,'” Joan added. “'If you hurt me, I'll tell you.'”
The Baruchs, another Minnesota couple, were also engaged to be married when Joan had her stroke. Her goal during rehabilitation was to walk down the aisle, which she did at the Renaissance Festival on Labor Day weekend that year, with a son on one side and a son-in-law on the other. But did the stroke change their relationship?
“We don't have sex,” Joan said.
“But I still married her, didn't I?” Jim added.
The couple, who will both turn 60 this summer, said they were active sexually before the stroke. Since then, Joan has had numerous health problems. But she's still willing.
“I get uptight every once in a while,” she said, telling Jim “quit treating me like your sister.” She's even threatened to sleep in the other bedroom, but hasn't.
For Jim, and for many other stroke survivors and their partners, the psychological hurdles seem higher than the physical ones. Joan, like so many stroke survivors, suffers from depression. She uses a cane and a wheelchair and just can't do the things she used to. Jim has helped with her care as well as with duties such as laundry. He's also had to deal with her aggravation. “You get a lot of the brunt of the frustration and the depression,” he said. “It kills the mood.”
But the Baruchs have not given up on sex. They plan to see a counselor. Meanwhile, they still hug and kiss and cuddle. Until the cat comes up. “She's jealous of the cat,” Jim said.
The good news for these couples is that at least they are talking about their intimacy issues. That isn't easy if you can't speak or understand well or if you have uncontrollable crying or laughing, both common after stroke.
“When you can't communicate, you can't tell anybody what you need or want,” Johnson said. And since at least 70 percent of sex performance is nonverbal, talking about it is not a habit that most people have. “That's why we don't ask doctors and nurses. We aren't comfortable talking about that part of our lives. Perhaps if someone else would ask, it might make it more comfortable.”
As far as Norm Friederich is concerned, “There should be therapy. Absolutely. There's got to be therapy. And there just isn't any.”
Kate added, “People really do have to just figure it out for themselves because everyone's problems and disabilities are different. Some feel as if they can't so they won't even try.”
Thanks to patience and experimentation, “We have found what works perfect for us,” said Kate.
Of course, there are alternatives for sexual expression, such as kissing and snuggling. And there's always self-gratification.
Just don't give up, Johnson said. “You have the rest of your life. Please, ask somebody. Don't put it off. Almost every problem you might be encountering has a solution.”
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