Working with clients who have differences of sex development

Differences of sex development (DSDs) or intersex refers to a group of conditions where there is a difference in how a person’s reproductive system has developed. There might be a difference in external genitalia, in internal physical structures, chromosomes or hormones. There may be a combination of these and how a person will present to healthcare, if at all, will depend on their difference.

For example, a baby might be born with genitalia that does not fit the typical of what is considered to be male or female, scans and tests might then be carried out and a diagnosis made. Or a young person at 16 may have not started their periods and this is investigated and perhaps found they were born without a womb.

The impact on each person with a DSD will be very different, the terms people use for their condition may also be different and in healthcare, we are mindful of the impact language has. In the past patients with a DSD may have been known as hermaphrodites, this is not only completely inaccurate, as the term refers to someone who has two complete sets of sexual organs – something that does not occur in humans – it is also now considered a very outdated and hurtful term to many.

The term intersex is also used by some and is part of the LGBTQI acronym, some people feel this is the most appropriate term for them to use and appreciate being part of a community that can offer support. The intersex flag has recently been added to the pride flag and there is growing representation within the LGBTQI community.

Other people may know the name of their own condition – of which DSD/intersex is an umbrella term for several diagnoses.

Clients may bring many things to therapy that they would like to explore, for some they will have had surgery as a baby which may have altered their appearance of their genitalia to ‘fit’ with what is typically considered male or female. People may have mixed feelings about this and want to reflect on early experiences and decisions made for them by healthcare professionals and caregivers.

Clients may want to talk about how they were told about their condition and how they now choose to talk to friends and partners about it, if they choose to at all. In my experience as a nurse specialist in differences of sex development and complex congenital gynaecology, I find common themes reoccur, questions like, how do I talk to a partner about my differences? When do I talk about how my difference affects my fertility? Do I have to tell people anything? Do other people with my condition have the same struggle that I do? In the counselling room, careful consideration can be made as to the meaning of these questions.

The most important thing to remember is that each person’s experience will be unique. That to have a rare condition can feel isolating and lonely. As with all clients, we want to create an environment where someone can feel safe enough to share all their experiences and feelings.

For more information or support contact DSD Families.