Women’s Sexuality and Sense of Self Profoundly Affected by Disease

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Pulmonary hypertension (PH) has a profound impact on the identity and sexuality of the women who live with the disease, a new study reports.

The study, “Sexual and Reproductive Health in Women with Pulmonary Hypertension: A Qualitative Study,” was published in Archives of Sexual Behavior.

The impact of PH on women’s sexuality has not been thoroughly studied, the researchers said. In this study from Italy, a series of semi-structured interviews was conducted with 25 self-identified women, ages 22–71. One of the women was from the Philippines and the rest were Italian.

Beyond the purely physical, living with a chronic illness can have a profound effect on a person’s sense of self, which in turn affects their sexuality.

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“There is something that marks you. I don’t know how to say … the disease is present in your life, isn’t it? Even if you stay positive and try to do everything you did before, the disease is present. It’s as if you have a life companion now. You are different perhaps in this sense,” one woman said.

Some women described the initial diagnosis of PH as being a shock, others felt lost and worried, while others said they felt anger, or fear and sadness.

One woman said that when she was diagnosed it “felt I had been beaten,” and another recalled that it “all happens so suddenly.”

Living with PH can cause challenges with sexual intimacy, ranging from symptoms like breathlessness and fatigue that can make it hard to be physically intimate, to logistical concerns like contending with oxygen tanks, catheters or other needed medical equipment.

While many of the women said that their sex lives changed markedly after they were diagnosed, many reported regaining a sense of normalcy as time went on.

“The impact was there in the physical sense at the beginning … Then, there is the psychological side. Then, slowly you come back to your normal sexual life. Everything is normal again after the moment of adaptation,” one woman said.

Even though sex-related issues were common, most of the women reported not talking about them with their clinicians, often noting that other concerns seemed more pressing.

“I’m so overwhelmed with other things. I don’t … I probably don’t think about it …. I have different priorities. I have things that come before that, so it probably took a back seat,” a 40-year-old woman said.

PH made dating more difficult for some women.

“I went on dates with two men who told me this [that the problem was the illness]. I say, ‘Well then, the problem is you, not me,'” said a 24-year-old interviewee.

The disease also affected the women’s sense of their own femininity, with scars and other illness-related changes leading to discomfort with their body image. While some patients “completely lost their sense of femininity,” others “could regain their wounded femininity by giving it a new meaning” in a way that incorporated their new identity as a person living with PH, prioritizing what was important to them, the researchers said.

“I prioritize myself. I discard the things that make me tired. Makeup and dieting is tiring because you have to give up things, and I say, why do I have to give it up? What do I care about it?” said a 53-year-old interviewee. “I like something and I do it. I like to drink a beer and I drink it. What do I care? … At this point I say, why should I give it up? I enjoy it and that’s it, and this is a change; yes, before I was one who cared, put on makeup. So … now I don’t care.”

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It’s widely advised that people with PH should not become pregnant, as the disease poses excessive risks to the pregnant person as well as the fetus.

Receiving this news was crushing for many of the women and caused feelings of hurt and injustice, particularly when clinicians were less than empathetic in communicating the news.

“I experienced it as something that had been taken away from me. It’s as if they had cut off my leg but no one had told me anything. They left me there and said, ‘Well now, go on, go, nothing happened,'” one woman recalled.

Younger women expressed hope that, with medical advances, it might become possible for them to get pregnant in the future.

For women who were in committed partnerships before they were diagnosed, many reported that their partners grew sweeter, more caring, and more attentive since they developed PH.

“He’s always been there. In fact, he surprised me because I said that he could run away, could he not? And so, on an emotional level, I received huge personal recognition,” said an interviewee. Another woman described the increased attention from their partner as more than what was helpful — “sometimes he seems a little excessive to me,” she said.

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