Sexuality and Cystic Fibrosis

By Geneviève Nadeau, sexologist

Sexuality: a subject causing much ink to flow! Whether you are a teenager, adult, male, female, transgender, heterosexual, homosexual, single, in a relationship, a parent looking for questions to answer those of his children, etc.; everyone wants to know more. In a society like ours, where social norms and stereotypes prevail, who can honestly say that they have never questioned themselves about their love and sex lives? We are constantly bombarded with images that dictate what a woman should look like, what a man can or cannot do; texts that explain in 10 points what to do to excite a man, or how to demonstrate « true » masculinity. It is difficult to navigate all of this whilst fully living our sexuality by ignoring the social pressures, being oneself, and not becoming a copy of what the media conveys.

When one adds to these questions, already ubiquitous, concerns and challenges related to physical condition, it is normal to feel overwhelmed. Finding a partner who shares our values, who respects us for what we are with our flaws, and with whom the sexual chemistry is present, is a challenge we all face. We all want to show ourselves at our best at the beginning of the relationship, but as intimacy develops, so comes the less good days when fatigue, stress, or simply bad news, sometimes takes over. Opening up to our intimate ones without fear of judgment: expressing what we live, what we fear, what bothers us, is not an easy task. Communication is the key to any relationship. That being said, it is not always so easy to implement. It is normal to wonder about the best time to tell our partner that we have cystic fibrosis. The first rendezvous is perhaps too fast, but after two months of dating, it may be that the other would feel hurt not to have known earlier. There are obviously no good answers to these questions: we must follow our instincts and discuss this when we feel that the time is right. If the loved one is the right one, they will receive your testimony without judgment, and with all the listening you need.

Once in a relationship, problematic or embarrassing situations can still occur. The ideal woman is often represented as always ready and available for sex, and the man as always the instigator with his beloved. But when vaginal infections, urinary incontinence, the irritation of scars, or simply a sense of discomfort occurs, it is even more difficult to indulge in sexual pleasure. Listening to and trying to understand our loved one is even more important with cystic fibrosis. No need to share all the discomforts, such as urinary incontinence that is sometimes caused by coughing, but it?s ok to leave ourselves the space for mentioning to the other that we need a moment to get more comfortable and feel good. It goes without saying that doing any exercise, such as sex, often leads to coughing. But once complicity has been developed within an intimacy, these moments are no longer an issue.

What about fertility? The majority of men with cystic fibrosis are infertile, and while some procedures may be undertaken for successful in vitro fertilization, these procedures are expensive and not fully effective. Mourning the idea of parenthood, at least from a biological sense, may already be an ordeal in itself. And in all relationships, that question arises: do we want to be parents? Of course, this issue becomes a couple question when the relationship turns out to be more serious. Again, listening and communication will allow us to express our desires and see if they can be compatible with those of the other.

Although women are not infertile due to cystic fibrosis[1], pregnancy can be quite a trial. In addition to discussing with her partner the best time to start a family, her doctor must be included in the discussion. He may give good advices on the health status of the mother and the risk of pregnancy. To all this is added the difficult but important discussion of who will take care of children should the health of the parent with CF deteriorate.

Unquestionably, being in a couple while having cystic fibrosis brings its share of discussions and issues! But that does not stop the possibility of having more than satisfactory romantic and sexual experiences. Pamper yourself, and let yourself be carried away by the beauty and happiness that love and sexuality can bring.

[1] A couple is said to be infertile after two years of unprotected intercourse without result, while infertility is a permanent inability to procreate.

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