Testimonial: Cystic fibrosis and sexuality: talking about intimacy without taboos

Sexuality. A subject that gets a lot of attention! Whether you are a teenager, adult, male, female, transgender, heterosexual, heterosexual, homosexual, single, in a relationship, a parent looking for questions to answer those of your children, etc.; everyone wants to know more. In a society like ours where social norms and stereotypes reign, who can honestly say that they never questioned their romantic and sexual lives? We are constantly bombarded with images that dictate to us what a woman should look like, what a man can or cannot do, with texts that explain to us in 10 points what to do to arouse his man or how to demonstrate his “true” masculinity. It is difficult to find your way around and to live your sexuality to the fullest while ignoring social pressures, to be yourself and not to become a copy of what the media conveys.

When you add to these questions, which are already omnipresent, concerns and difficulties related to a physical condition, it is normal to have the impression of being overwhelmed. Finding a partner who shares our values, who respects us for who we are with our faults, who has sexual chemistry is present, is a challenge we all face. We all want to celebrate our best day in the early days of a relationship, but with the intimacy that sets in, there are also bad days when fatigue, stress, or just plain bad news sometimes get the best of us. Opening up to others without fear of their judgment, expressing to them what we are experiencing, what we are afraid of, what bothers us is not an easy task. Communication is the key to any relationship. With that said, it's not always that easy to implement. It is normal to wonder about the best time to tell your partner that we have cystic fibrosis, the first date may be too fast, but after two months of dating, the other may feel hurt for not knowing it sooner. There are obviously no good answers to this question, you have to follow your instincts and discuss this when you 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.

But once in a relationship, problematic or awkward situations can always arise. We often represent the ideal woman who is always ready and available for a sexual relationship and the enterprising man with the loved one. But when vaginal infections, urinary incontinence, discomfort with a scar or simply a feeling of discomfort occur, it is even more difficult to let yourself go in sexual pleasure. Listening to and understanding your loved one is even more important when you have cystic fibrosis. No need to share all the discomforts, such as the urinary incontinence that a cough sometimes causes, but to leave space to tell the other person that we need a moment to get more comfortable and feel good. Not to mention that exercising, as can be a sexual relationship, often leads to coughing fits. But once a complicity has been developed with the other, these moments are no longer an issue.

When is it fertility? The majority of men with cystic fibrosis are infertile and while some procedures can be undertaken to achieve successful in vitro fertilization, these procedures are expensive and not completely effective. Grieving parenthood, at least the biological one, can already be an ordeal in itself. And in all couples this question arises: do we want to be parents? Of course, this issue becomes a couple's issue when the relationship becomes more serious. Again, listening and discussing will allow everyone to express their desires and see if they can be compatible with those of the other.

Although women don't have infertility due to cystic fibrosis, pregnancy can be quite an ordeal. In addition to discussing with your partner the best time to start a family, you should include your doctor in the discussion. It can provide good advice on the health of the mother and the risks of pregnancy. In addition, there is a difficult but important discussion about who will take care of the children if the health of the parent with CF worsens.

Definitely, being in a relationship while having cystic fibrosis brings its share of discussions and challenges! But that doesn't prevent you from having more than satisfying romantic and sexual experiences. Take care of yourself and let yourself be carried away by all the beauty and happiness that love and sexuality can bring us.

Geneviève Nadeau

Gatineau