Thoughts on DSDs

By Massimo Di Grazia

Massimo will be contributing future articles to the HEA newsletter. He is one of HEA's members from Italy.

Being born with a condition that affects one’s urogenital apparatus certainly presents difficulties and problems that, from my point of view, must be considered from more than one perspective. It is necessary to have clearer and richer ideas and suggestions for possible areas to be investigated in order to have a more meaningful vision. This global view can be useful to meet the needs of patients and their families.

In this article, I bring out an aspect that is often considered insignificant and given little consideration or care: the perception that the subject has of his or her own body, in particular the body’s parts that we could define as “not normal.” People with disorders of sex development (DSDs) are born with problems in a very important part of their body. Although it is not vital for this part of the body to be “normal” from a physiological point of view, this body part is very important for human relationships. All of us have relationships with other people, and any contact between sentient subjects leads to the realization of what we can call relationships. We can make an almost endless list of relationships that people experience, from development in one’s mother’s uterus to relationships with our mothers, fathers, friends, grandparents, siblings, girlfriends and boyfriends, wives and husbands, and people in our workplaces. Among these relationships, there is a very important additional one: the relationship with oneself, one’s feelings, and one’s body. Every day, we have to deal with our relationship with our body, and we cannot face it or avoid it in the same way as our relationships with friends or family members.

For people born with urogenital conditions, analyzing the relationship with one’s own body involves real situations that unfortunately have a level of gravity different from most, such as cloacal exstrophy. One objective is to be in touch with one’s genital differences, and this daily encounter with the “abnormal” body can lead to an emergence of conflicts in one’s relationships with oneself and with others. These conflicts can be full of anger, shame, feelings of weakness, and fear, including fears in dealing with sexual relationships. This can lead to limitations in friendships, leisure, hobbies, and sports. People with DSDs can be alone during their growth and forge relationships that may increase loneliness. This solitude may be filled in other ways, some of which can be very harmful and sometimes fatal for a person. I could make a long list of extreme situations, such as the abuse of drugs or alcohol and even suicide. Closing in on themselves, people can fall into depressive situations, such as detaching themselves from the reality in which they live and, as I like to put it, living a life like a laboratory mouse and creating barriers so unassailable that they no longer know where they can see reality or the truth.

This lost perception again causes a loss of the relationship with one’s own body. How can we regain possession of the relationship with our body? What toll must be paid to recover this crucial rapport? I don’t think this journey of recovery has dates, beginnings, or endings. We can speak about a shift of awareness, but, not wanting to use that word, I would speak of a relational path, because I think the first step is precise speech and love towards one’s own body, which has already undergone physical and psychological violence. I want to use the word violence because to feel other hands on one’s own body without knowing or understanding why can be a first step in giving a name to this situation that makes us lose sight of the most important relationship. The dialogue used with one’s own relationship opens a channel of freshness that makes it possible to communicate with the body parts that are “bad.” When you hear a term used which is right, you can open a new channel of communication.

Children often give names to persons and objects that are their friends, creating wonderful relationships. They learn to discover the relationships within games alive with voices and gestures, and with objects that have names. In saying that, I would like to add that even in the darkest, as well as the most beautiful, situations it is important to have a dialogue with oneself. But it must be a dialogue that encodes what one feels and lives.

This is a first step that may trigger a transformation of oneself for interior growth. I think the most important transformation is to remove the encoding of “a person who is not normal in his or her own body” and use the simple encoding of “a person.” I know very well that this process is a long one, with many pitfalls, and that it can touch many intimate situations full of taboos or shame. Yet closing the relationship with oneself can increase the pitfalls, and taking refuge in drugs or alcohol can make one lose sight of the encoding of himself or herself. The first steps in this journey of our own relationship are to focus on ourselves; to be able to say who we are, where we are, and where we are going; and to quantify this and everything in the here and now.