Background: Rheumatic and musculoskeletal diseases (RMDs) have a great impact on people’s quality of life affecting daily tasks. Research has shown that sexual relationships are also affected by RMDs. This occurs by one or a combination of: (1) the symptoms of the disease and (2) the side effects of the medication.
Although we are all here because of sex, talking about sex and sexuality remains taboo. Physicians themselves report that embarrassment, lack of time, lack of knowledge about the topic, or age are barriers that prevent them from starting a conversation about the subject. Consequently, the sexual sphere of people with RMDs is neglected; producing uncertainty in the people affected by them and their partners.
In 2016, we set ourselves the task of studying what has already been created. The only material we found was a book with drawings that showed several sexual positions. We realized that the existing material fell short and we knew that we could make an original contribution. That’s why using participatory action research (PAR) approach we decided to create Reumasutra (LLC): The kamasutra for people with rheumatic diseases.
Objectives: To understand the complexities and the difficulties of sexuality in people with RMDs,
To offer a solution to the problems previously identified,
To (un)validate the proposed solution using the feedback of people with RMDs.
Methods: PAR affirms that experience can be a basis of knowing and that experiential learning can lead to a legitimate form of knowledge that influences practice.
PAR differs from conventional research in three ways. Firstly, it focuses on research whose purpose is to enable action. Secondly, PAR pays careful attention to power relationships, advocating for power to be deliberately shared between the researcher and the researched: blurring the line between them until the researched become the researchers. Thirdly, PAR contrasts with less dynamic approaches that remove data and information from their contexts, by advocating that those being researched should be involved in the process actively.
Results: Our project is divided into three phases.
In the first phase, interviews with people with RMDs were conducted. The interviewees expressed that sex remains a taboo topic, which is often ignored by physicians. Besides, we opened a suggestion box on the website www.reumaxxx.com. Last year, we received feedback from approximately >30.000 people. After evaluating the feedback, it was clear that the best way to educate in sex in RMDs was by showing real people practicing adapted sexual positions.
For that task, we asked a couple with RMDs to validate the sexual positions that appear as drawings on the only book we found on the topic. Also, the couple added new sexual positions that they have been using and adapting to be sexually active despite having RMDs.
In the second phase, we recruited sex surrogates with experience with people with functional diversity to recreate the sexual position previously validated. The sex surrogates received coaching in real-time from a person with RMDs. The positions were filmed in January 2020.
For the last phase, we expect to upload the audiovisual content to the website. Afterward, we will send out surveys so that the users themselves can determine the validity and usefulness of the solution created.
Conclusion: Mobility in rheumatic diseases is affected. Sex is dynamic and a person cannot properly learn a new dynamic reality using static resources. We need to cross the taboo line to offer real solutions anchored to the reality of people with RMDs.
Acknowledgments: To Dr. Anne Campbell, John Campbell, Miss Estigia, Ivy de Luna, Sylvan, and Sally Fenaux and her crew.
Disclosure of Interests: None declared
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