I recently was part of a documentary called “The Truth of My Sex.” It was produced by the BBC and broadcast here in the US on the Oprah Winfrey Network. Although I have done documentaries for PBS, National Geographic, and even the Discovery Channel, I have never gotten so many e-mails that made it possible to invite men from around the country to come and join HEA in Chicago at this year’s conference. Call it the Oprah factor….
These e-mails almost always speak to the shame, isolation, secrecy, and fear these men have about their genital difference. Many of them report such poor medical care that they avoid doctors completely. Often, they avoid relationships because they don’t know how to tell a prospective partner about their genital difference. Lingering resentment toward or alienation from their families can add to their lack of support.
Some of these people come to the conference. More about them in a moment. Others cannot face the idea of standing in front of other people and admitting to their genital difference, even knowing that they are at a conference full of men who share that difference. The fear and the shame are so deep, the secret so carefully kept for so many years, that they simply cannot attend, even though they want to and they know it would be good for them. Sometimes they will come in another year; sometimes they will ask to be dropped from the mailing list because the reminder that someone “knows” about them is too much to bear.
The ones who make it to the conference, the ones who face their fears and deal with how frightening it is to imagine talking about something they have kept hidden for so long, almost universally have the experience of the greatest relief they may ever have known. To hear other men telling a story they thought was only their own; about the family shame, the scary hospital memories, the teasing from other kids, the intrusion of multiple genital exams. As well as the stories that bring a smile of recognition: peeing on the toilet seat, always looking for a toilet with a door and a lock, remembering to drink a lot of cranberry juice. This experience of belonging, the one thing that has been impossible to achieve previously in their lives, is finally theirs. What a relief to be surrounded by others who know what you’ve been through without having to go into an uncomfortable explanation that might never be really understood .
Hypospadias is the most common congenital difference in human beings. Epispadias is more rare. There are millions of men living with them.
I know that coming to HEA can literally be a lifesaver. When I was a young doctoral student in 1984, I chose to appear on television to talk about genital difference. I was told by a researcher who had studied more people like me than anyone had before that I was the first he knew of who was willing to be seen and known as (what it was called then) a hermaphrodite. I did it not only to reach out to other people who had been born like me, and suffered as I had, but also to reduce my own sense of stigma, to stop feeling that I could never tell anyone and that if anyone did find out, I would simply die of embarrassment. I couldn’t have that hanging over my head, so I took control of the secret and let it out on national television.
So many people look at the HEA website. So few ever come to a conference, let alone join this organization.
If what I have written here has touched you, please come to a conference if you never have. Please write to the doctors who have treated you and encourage them to tell their patients about HEA. If you know someone with a genital difference who is still in isolation, please invite them to a conference. And please support HEA by becoming a member; it is so inexpensive in comparison to the good that this organization does for so many who come and have that great moment of belonging, as well as those who can look at the website but still believe that they can never let themselves be known.