Sexuality is like the crazy auntie in every family. Everyone knows she’s part of the family, and she’s there at all the gatherings, but no one wants to talk about her, or to her,” says Amye Leong, MBA, of a subject she’s very passionate about: sexual experience and the rheumatology patient. Leong is the speaker for the April 17 ARHP audioconference.
As the spokesperson for the U.S. Bone and Joint Decade and a motivational speaker, consultant, health advocate, and the founder of support and education groups for patients, Leong knows what patients care about. She is also a patient herself: Leong has been disabled to varying degrees by rheumatoid arthritis, Sjögren’s syndrome, and osteoporosis since age 18. She has had 16 surgeries, including joint replacements, in the course of her treatment.
A little humor goes a long way toward defusing collective anxiety over discussing sex, but that doesn’t diminish the seriousness of the subject. “Half of the patients who have RA experience a loss of sexual interest, and 60% are completely unsatisfied with their sexual quality of life,” says Leong. More worrisome, research hasn’t addressed those who suffer from osteoarthritis, perhaps the fastest-growing patient cohort in our aging population. “We have to borrow from chronic disease and sexuality research on breast cancer, diabetes, and heart disease,” she notes.
It is essential for health professionals to discuss and offer resources on this crucial aspect of quality of life, Leong says, because “sexual expression and satisfaction are part of what makes up health and well-being in an individual. But we have to look at some hard questions like, ‘Are our healthcare professionals competent with—or even comfortable with—assisting patients with this aspect of health?’ ” Research shows that neither patients nor caregivers know how to begin discussing the subject.
“Patients desire information on the subject, but don’t know how to approach it with their doctors,” says Leong. Language presents a significant obstacle; many adults are uncomfortable discussing a topic with so many layers of taboo. In addition, sexuality research uses loaded terms that could bar discussion. “I use the phrase ‘sexual relations,’ rather than ‘sexual dysfunction,’ ” she says, “because I’m dismayed to see so much emphasis on negative terminology.”
Whatever the term, the problems are real. “When patients have issues with mobility, pain, and function, research shows there is a concomitant concern about body image, perception of self, and portrayal of self to others.” she says. “The more [affected] the individual is by the disease, the greater the impact on their sexuality. They may then experience difficulties with libido, the desire to please, physical function, and enjoyment itself,” says Leong.