by Katie Steedly Curling, PhD, Writer & Guest Blogger for TSF
A writing teacher explained to me after he read my essay, “The Unspeakable Gift,” that the essay was the moment I came out as a woman living with Turner syndrome. It focused on my experience participating in a Turner syndrome study at the National Institutes of Health. He was right. I had been silent about Turner syndrome with everyone but my immediate family and doctors prior to that publication. At 15, my diagnosis was shrouded in fear and denial. I did not want to find out any more about the condition. I wanted to be normal and living with Turner syndrome did not feel normal. At 37, I went public with very intimate details of my health story.
Coming out does not have to be an essay in a magazine. I jumped into the deep end of the disclosure pool. Each person touched by Turner syndrome, or any health issue for that matter, has to come out (or not) in their own way. It is a deeply personal and individual choice. It opens us to questions that may or may not be comfortable or answerable. It means we have to make peace with our bodies enough to find words. It connects us with the community of people who live with chronic conditions. It forces us to break barriers of isolation and shame. Coming out is a tough thing to choose when silence can be a warm safe space to hide.
I have learned a few things about coming out over the years. I have learned that people know very little about genetic disorders. Once I disclose that I have Turner syndrome, I am immediately thrust into information-giving mode about sensitive subjects like infertility and cognitive and social functioning: not necessarily the easiest things to talk about. I have learned that most of my conversations about Turner syndrome are compassionate and caring. They ease my fears of being judged and rejected. In fact, these conversations build trust. The more I talk with others, the easier it gets and the less strange and broken I feel. Ultimately, it is about the value of vulnerability. Courage is found in coming out.
In retrospect, coming out was one of the hardest and most important things I have ever done. After many years of silence, a weight was lifted from my shoulders. It did as much for my confidence and sense of self-worth as the achievement of life goals because the risk of being seen is as great as the risk of failure. It invited others to get know me, and me to get to know others, in meaningful ways. (I am still working on getting better about inviting others into my story and listening to the stories of others. I suppose that is a lifetime challenge for us all.) Most importantly, it allowed me to begin to see Turner syndrome as a gift that has allowed me to realize my strength, to share hope with others, and to understand difference more deeply than I could ever imagine without Turner syndrome.
Katie’s honesty shows how being open about your diagnosis can lead to a community of support. At TSF, we strive to build a community of shared experience and hope, like in the Star Sisters group.
For parents looking for ways to share a diagnosis with their child, we’ve created the Tina Talks Turner’s children’s book and video. Tina discusses her own TS journey to help young girls make sense of their diagnosis. Start the conversation today for improved health outcomes tomorrow.