Would you like to know the secret of success according to people who grew up with the conditions we’re talking about? Well, here it is: the best thing you can do for your child is to be open and honest with him or her about his or her DSD. When you are honest, you let your children know that you are not ashamed of them. You also let them know that you can be trusted to be a source of truth in their lives.
Sadly, a lot of people learned this lesson the hard way. Until recently, it was common for doctors and parents of children with DSDs to both hold back and misrepresent information, even after these children became adults. These parents and doctors did not do this because they wanted to hurt the children; on the contrary, they held back and misrepresented information because they wanted to protect them. But this backfired. The children who grew up in these situations often later felt betrayed by their parents and doctors, overwhelmed with feelings of shame, and frightened to seek medical care and family love, even when they needed it.
In this way, the issue of truth-telling about DSDs can be compared to truth-telling about adoption. It used to be the case that most people kept adoption a secret and children would never be told that they were adopted. By the end of the 20th century, however, most people came to believe that it is actually healthier for children to know their own roots and their own personal stories. Similarly, in the recent past, parents of a baby born with a DSD were sometimes told to keep it a secret. But, like information about adoption, we now know that children (and adults) with DSDs do better knowing their own personal stories and understanding their own uniqueness.
If you find yourself wanting to keep your child’s condition secret from him or her, remember that secrecy often doesn’t work as it is meant to. Many people—including even young children—pick up on family secrets, especially when the secret that is being kept is about a member of the household. Secrets also have a way of eventually coming out, whether it’s through a family argument or an accidental slip. That’s not the best way to learn something like this. Even if the secret didn’t come out in this way, adults with DSDs who were not told about their condition say they sensed that there was something about them that they weren’t being told. Why all the trips to the doctor where their genitals were examined? Why did everyone act weird when they asked questions about their surgeries? These types of questions led adults with DSDs who were not told about their conditions to go to great lengths to find out the truth, and sometimes their imaginations filled in the blanks with “facts” that were more frightening than the actual truth.
So one of the troubles with secrets is that they can’t easily be kept. Another problem with secrets is that they suggest there’s something bad or shameful that shouldn’t be spoken about. Hiding or lying makes shame get bigger and bigger. Adults with DSDs who were treated with secrecy and shame accidentally got the message that there was something monstrous about them. Again, many of these people felt deceived by both their parents and their doctors. As a result, it was extremely hard for some of them to have any type of trust toward their parents, medical people, or people in general.
In addition to feeling confused, frustrated, and shameful, many adults with DSDs who weren’t told about their conditions felt a deep sense of isolation, often made worse by lack of trust. They felt all alone, as if they were the only people in the world who had this condition. This is another one of the “side effects” of secrecy and shame. Secrecy and shame shut down our understanding of difference and isolate those who are different.
This is the cycle that needs to be broken. And the good news is that, nowadays, individuals with DSDs and their families don’t have to feel overcome with shame, confusion, loneliness, or secrecy. Support groups, patient advocacy groups, informal support networks, and condition-specific organizations give people with DSDs the chance to connect with one another and realize that they are not alone. The public education work done by support groups has let a lot more people know about DSDs and the people who have them.
So here’s the bottom line: when you are open and honest with your children about their DSDs, it shows your children that you accept, love, and respect them, and that you are not ashamed of them or of being their parent. Again, your love and acceptance is what’s really going to do them the most good.