Jen Cueva, who is a pulmonary arterial hypertension patient and former nurse, serves as a forum moderator for “Pulmonary Hypertension News”, where she has weekly column. In an article published on September 18, 2024, Jen addressed the very important but little talked about issue of intimacy and sexuality in pulmonary hypertension. Companionship and physical intimacy play an important role, she says, but if you have a rare disease like pulmonary hypertension and suffer from its common symptoms of exhaustion, pain or shortness of breath, intimacy often becomes a secondary need and is also something difficult to talk about. She refers to a small-scale study reported by Pulmonary Hypertension News in 2023 which revealed that only a third of patients considered discussing sexuality with their healthcare providers.
Jen had already discussed this topic in a column titled, “Keeping Physical Intimacy Alive, Even With PH”, in 2022, where she shared her own experience with her husband. This is a good time to revisit the conversation about intimacy, she says, because September is Sexual Health Awareness Month. During this month The American Sexual Health Association is offering many resources, together with guidance on communications with healthcare providers.
Music can improve or hinder the mood
Jen notes that while music influences our behaviours deeply, by encouraging joy, comfort and even arousal, it can also stimulate feelings of inadequacy and pressure. Many songs show sex as easy and pleasurable, often ignoring the difficulties of those with pulmonary hypertension. Some lyrics hypersexualize women putting pressure on both men and women to achieve unrealistic standards.
The importance of feeling seen and heard
Even though some people are having conversations on sex today via PHA PHriends, and the issue is being dealt with even in public spaces like columns and forums, sexual health is still a topic raised with difficulty, Jen points out. If this sensitive subject were taken up more openly, it could unite patients. More representation in popular media is needed. By stimulating a more sympathetic understanding of different experiences a broader view of sex for pulmonary hypertension patients could be achieved. The music industry should be sensitive and encourage discussions on the complexities of chronic illnesses.
Listening to empowering music can boost our spirits. Jen says that preparing for an appointment by listening to music that uplifts our self-esteem could give us the impulse we need in order to tackle a complicated conversation.
Conclusion
In the pulmonary hypertension community, many continue to enjoy healthy sex lives by keeping up open communication and accepting a few adaptations. Let us celebrate the power of music and conversation in boosting our well-being, concludes Jen.
Summary by Deger Kesimoglu, a pulmonary arterial hypertension patient and member of the PAHSSc, Turkish Pulmonary Hypertension Association.
Read the full article at this link on Pulmonary Hypertension News
