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Disease taboos can stifle satisfaction

People with disabilities often struggle silently with sexual woes.
Duane Hoffmann / MSNBC
/ Source: contributor

Recently a news release came across my desk titled “New research addresses taboos around the impact of rheumatoid arthritis on patients’ sex lives.”

I wasn’t aware that there was any taboo linking rheumatoid arthritis and sexuality, but there is, say experts.

“I have had arthritis for over 30 years and in all that time there has been no health professional who has ever asked me if I have problems with my sex life,” Connie Ziegler, project manager of the Danish Rheumatism Association, told a press conference during the June meeting of the European League Against Rheumatism.

Many arthritis patients are not inclined to speak up about sex, and rheumatologists, like most other doctors, do not routinely ask. Even if they did, they likely have little or no training in the subject and so have little advice to offer. 

This does not come as a surprise to Dr. Marcalee Sipski Alexander, the director of neuroscience research in the department of physical medicine and rehabilitation at the University of Alabama, Birmingham. (No, she’s not a relative.)

She studies disability and sexuality and says “there has historically been very little work done. When I got involved in 1986, I reviewed the literature and there were about five articles and the numbers of patients involved were very small. It was very cursory and not very useful.”

Things have changed for the better over the intervening 20 years. More research is being conducted with people who have injured spinal cords, or suffer from multiple sclerosis, ataxia (a neurological disease that causes muscular discoordination), arthritis, brain injuries, chronic pain and other conditions. Yet much of the new information is not finding its way to patients.

Unmet need
“This is definitely a need that has gone unmet,” says Alexander, who was once part of actor Christopher Reeve’s medical team and who has probably done more research into the sexual responses of women with spinal cord injury than any other doctor or scientist.

This isn’t just the case for arthritis patients or those with damaged spinal cords. According to research from the University of Pittsburgh Medical Center on 133 women with multiple sclerosis, 61 percent had problems with bladder control that could interfere with sex and 47 percent said neurological problems inhibited their sex lives.

Alexander believes at least part of the reticence is due to a historical “negative attitude” among the medical establishment. People with disabilities and diseases were thought to be virtually sexless. That is not true of course.  

For example, Alexander’s research has shown that about half of women with spinal cord injuries who cannot feel surface sensation do achieve orgasm with the help of vibrators, training and practice. “And if 50 percent are successful, there is no reason they all can’t be successful,” she says. (The exceptions are certain patients whose injury is extremely low on the spinal cord.)

There is often a great desire among people with disabilities for a return of sexual function, but not all the blame for the slow progress in helping them can be laid at the feet of doctors and scientists.

Many people with disabilities are embarrassed to take part in studies like Alexander’s. “Look, I am essentially asking people to come into the lab and masturbate for me," she says. "Some will. But some listen and then say, ‘No, thanks.’”

Another barrier to progress is the murky psychology of sexual arousal. Research on the physical ways in which arousal and orgasm happen does not necessarily address what’s going on in our heads.

Arousal has a great deal to do with how sexy and attractive we feel, as well as our emotional state. While it might be physically possible for a person with disabilities to experience arousal and orgasm, they may be inhibited by fear of losing bladder or bowel control, or having to use a device to create an erection for intercourse, or the disconcerting image of spasmodic movement associated with a disease like Parkinson’s. Combine these fears with being depressed over one’s condition and it’s not a great recipe for sexual success.

A 45-year-old Spanish woman with ataxia named Encarna Conde recently decided to prove that disability need not prevent a person from being sexy. She appeared in a new movie called "Rompiendo Barreras," which means breaking barriers. The movie was made by one of Spain’s busiest porn producers, Antonio Marcos. 

According to Alexander, one’s sexual partner can make all the difference. Just as in any other relationship, an understanding, passionate, patient lover instills confidence and security.

Making sex better for anyone who has impaired function benefits everyone. Neurologists are discovering that studying the sexual responses of people with brain damage or spinal cord injuries is helping illuminate how arousal and orgasm occur. Indeed, people with disabilities are sexual pioneers for the rest of us because someday all of us are going to encounter one of life’s curveballs and we too may need new devices, sex positions or techniques to help us enjoy our erotic selves.

Alexander herself encountered such a curveball this year after having been treated for cervical cancer. “Who tells you how to have sex after cancer?” she asks. “Nobody.”

Yet another reason why we all should be willing to talk to doctors and therapists about sex, and why if we aren’t satisfied with the answers we should keep asking until we are.

Brian Alexander, a California-based freelance writer and contributing editor for Glamour magazine, is working on a new book about sex for Harmony, an imprint of Crown Publishing.

Sexploration appears every other Thursday.