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    • #11709

      As a young 26 (soon to be 27) year old with Pulmonary hypertension, I feel that my definition of a lot of things in life has changed since being diagnosed and developing symptoms. One thing that has changed is my definition of what it means to be intimate with my partner. The symptoms of pulmonary hypertension make it difficult some days to have physical and sexual intimacy.

      I don’t feel physically attractive and have a low self image on the days when I am dependent on oxygen. This gets in the way of my sex life and my desire for sex when I don’t feel good about myself. These concerns can be hard to talk about with a partner. Something else that gets in the way is the symptoms such as shortness of breath, fatigue, and increased heart rate.

      In the last 6 years of being in my relationship with my boyfriend, I have found it helpful to be as honest as possible about my feelings. Whether that be addressing my lack of confidence or lack of physical ability. On days or weeks where I don’t have the energy for physical intimacy, I rely on other ways to be intimate such as laying with each other, holding hands, or relaxing next to each other while watching a movie or show that we both enjoy.

      Do you find it difficult to be physically intimate with a partner because of your symptoms or self confidence? What are some other ways that you experience different types of intimacy? How do you communicate your concerns to your partner?

    • #11715
      Kathleen Sheffer

        This was a huge issue for me. I didn’t totally understand the full impact of PH on my ability to be intimate until after my transplant when kissing no longer left me short of breath and ditto other activities.

        Most often I saw my partner in the morning or at night, both of which were peak exhaustion times for me. It wasn’t just that I wasn’t “in the mood” to be intimate, I wanted to keep sleeping or go to sleep. Not sustainable for a long-term relationship.

        It helped to carve out time on the weekends when we could spend time together in the afternoon when I felt more energetic. Chronic illness definitely forces us to be planners (gotta keep track of those spoons), but, hey, the planning part (and anticipation) can be sexy, too.

        Being hypoxic is definitely less sexy than wearing oxygen. I’d ask your boyfriend to give you some extra compliments, validate that your cannula can make you feel self-conscious, and reaffirm that he loves you and all things related to caring for you.

      • #34255
        Jen Cueva

          Although this is an older topic, I thought it would be a great place to share my latest column. We all want and deserve intimacy, which can be fulfilled in many ways.

          “But PH and my other coexisting illnesses have affected me in the bedroom. When I experience increased fatigue, pain, or shortness of breath, sex is the last thing on my mind.”

          Do you feel inadequate when it comes to sexuality?

          You can read my column here and share your takeaways.

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