There are many misconceptions about sex and long-term conditions such as PH.

When we and other people start to believe these mistaken ideas, myths are born, which can stop people from sharing close moments together. When people believe these myths there is a real danger of seeing individuals with an illness or disability as asexual or fragile. This is absolutely wrong!

This section aims to understand and debunk some of these myths.

Myth: People with PH are not sexual or desirable

The origin of this myth probably lies in some people believing that those living with an illness or disability are different from them. Because you are ill and need help to do some things, some people may see you as almost helpless, dependent, and consequently not sexual.

The fact that you may have many years of experience, and have the body, brain, temperament and libido of an adult, appears to be forgotten. The truth is that you remain a person with your own sexual identity and you should be able to tell your partner what your needs and wants are, whatever your age or physique. To do this it’s important for you to have some idea of what you want and need from your sexual and intimate experiences.

Myth: People with PH cannot have ‘normal’ sex or experience intimacy

There are huge differences about what ‘normal’ sex and intimacy actually mean and many of these differences exist around myths. Just look at the common scenes within film and television programmes, where we can see how sex is ‘supposed’ to work. There, sex is often portrayed as progressing from light activity such as kissing to a full-blown bedroom scene and multiple orgasms in less than ten minutes!

Not only that, but according to these scenes, we’re supposed to have sex in a variety of different position and locations – all on the same night. According to these myths, masturbation doesn’t even count as sex, and it is for people who can’t get ‘normal’ sex.

The truth is that the majority of people with or without illness or disability can have intercourse, but sex is far more than penetration and orgasm. Those of us who cannot or choose not to have sex, can still have real experiences of intimacy.

Coming to terms with PH can feel like a challenging ride of conflicting anxieties and emotions. When you have to cope with hospital appointments, new treatments and changes to home and work life, sex and intimacy could be the last thing on your mind. These things are, however, a fundamentally important part of a normal and healthy life, and their importance should never be taken for granted or forgotten.

An optimistic and loving relationship can have a positive effect on your health and increase the feelings of contentment of you and people close to you. It is important to have the ability to enjoy and control our sexual behaviour without guilt, fear or shame.

Myth: People with PH have more important things to worry about than sex

This has its roots in the belief that sex is merely a frivolous pastime, and probably only has a real part in procreation. This myth also evolves from the rather patronising belief that people with a serious condition such as PH lose the desire for an enjoyable and meaningful sex life and intimate moments.

If we believe this myth, we risk limiting our sex lives, and run the risk of damaging our sense of self-worth. Sexual interaction and intimate moments can be a good outlet for stress and can distract from the day-to-day worries of living with PH. It can also be a time to share your feelings about having PH and provide the opportunity for others to open up with you.