Over the past few months, I have been reflecting on the deep-seated reasons for my career change from an academic scientist at a top tier research university to my new venture in science policy in DC. I realized that founding the Beautiful You MRKH Foundation, Inc., with Christina Ruth and becoming a patient advocate for women born with MRKH, a congenital syndrome leading to primary infertility, played a major role in my decision (see my previous blog post on infertility and MRKH). The name of our non-profit agency underscores the importance of recognizing beauty in oneself, yet hints that society’s definition of beauty often rests on the outward physical manifestations of one’s individual genetic roll of the dice. Many women who are born differently (those of us with MRKH and other conditions that challenge our value as women) often have a negative body image, suffer from poor self-esteem and view themselves as unlovable, broken, unworthy, ugly, anything but beautiful. We strive to help women with MRKH see their true beauty, realize that their beauty has always been there and live their best possible lives.
This brings me to answer the question, “What does beauty mean to me? What is my best possible life?” I look at all of the beautiful, courageous women Christina and I have touched through BYMRKH and MRKH Support and Awareness, our Facebook support page, and realized that we have reached nearly 500 women around the world. Some of these 500 women had never communicated with another MRKHer. Some had never known others like them existed. Some showed tremendous courage by being vocal about MRKH in countries where the culture makes simply discussing MRKH difficult, if not dangerous. Some have known they had MRKH since they were very young. Some are just learning about their diagnosis. Some have a very strong belief in God and religion. Some do not. Some are young. Some are old. Some are confident. Some are deeply affected by their diagnosis. Some are brash and bold. Some are shy and humble. Some are wild. Some are proper. Some have embraced MRKH. Some are embittered by their diagnosis. Some have told stories that made me cry. Some have told stories that made me laugh. Some evoked outrage in me at their treatment by physicians they trusted to care for them. Some had kind words and praise for their medical team. Some had supportive families. Some had distant and aloof families. Yet through these differences, the most beautiful sight I have seen is when all of these unique women sit together in a room. They look around at the diverse group of women and feel an instant connection, an instant bond, an instant sisterhood. They feel, viscerally, the struggles, the challenges, the pain felt by all. They know the joys, the triumphs, the strength of each of these beautiful women. And, they feel at home, sometimes for the first time since their diagnosis. This is what beauty is to me, and this is my best possible life.