Persistence and Self-Advocacy Allows Me to Serve in the Peace Corps in Africa - by Michaela Wolfinger
I’m currently serving in the Peace Corps with Turner syndrome (TS). There are many reasons why I decided to serve, including the opportunity to exchange skill sets with host country nationals, language immersion, and an opportunity to live in a different part of the world while representing the U.S. My friends and family were very supportive in my decision, though concerned for my health and safety. I honestly don’t know how I managed to do it.
I was diagnosed with TS at 16. I knew something was different compared to my friends with height and the timeline for going through puberty, but it took some convincing for my parents to take me to my pediatrician. I was given the choice to try growth hormones and spent the rest of high school with regular visits to my pediatric endocrinologist. Fast forward many years, and I’m very lucky. I’m healthy, taller than my mom, and working in public health in Malawi in Africa.
My first post in the Peace Corps was in Benin, West Africa. I focused on food security. I lived in a remote village in a simple cement floor, brick wall and tin roof house, without running water or electricity for just over a year. It was an amazing experience. My village protected me, took great care of me, and were extremely kind and giving. My fellow volunteers became some of the best friends I’ve ever had. There are many health issues with living in a remote village, but my Turner syndrome didn’t have an impact. There is no correlation between TS and malaria or food poisoning that I know of.
My second and current post in Malawi is very different. I work at a university, in a big city, as a health policy analyst. I have a nicer house with more amenities, including running water, electricity, and access to a varied diet. I miss having a village community, but I’ve found a group of friends that look out for each other. I have not met anyone else in Africa with TS during my travels, but that doesn’t mean they don’t exist. Especially in Malawi and Benin, it is not common to test for TS. My overall experience made me appreciate my health more than ever. I never want to take for granted access to fresh produce, the ability to go for a run outside, or clean drinking water, ever again.
Peace Corps had many concerns about letting me serve with TS. Understandable, as they are responsible for my health and safety during my service. My medical team in Benin and Malawi have been nothing but outstanding. The biggest obstacle with obtaining my medical clearance, and general healthcare at home, has been explaining Turners syndrome to health care providers who have not had experience with it. One Google search and TS seems to be Pandora’s box of health issues. Working overseas required countless labels and tests along with personal statements on how I’ve managed my health condition for the last 20 years. The medical clearance process was exhausting, frustrating, and made me feel like a science project all over from when I was first diagnosed. Thank goodness I’m nothing if not stubborn and persistent.
I wanted to share my story to encourage persistence and self-advocacy. It takes time to explain Turner syndrome and all its nuances. Each diagnosis is different. My current physician, my pediatric endocrinologist, and the internet, were all the resources I had. Living in Montana during my diagnosis, I didn’t have the opportunity to meet anybody else with TS or attend conferences. I also didn’t want to make TS about more of my life than it already was. I didn’t want it to define me. Now I don’t want TS to keep me from pursuing a career I love. Self-advocacy has become more and more important to me. I work with my physician to get regular tests and checkups, I guard my health with a passion by being as active as possible and eating as best as I can, and I am not afraid to ask questions. Lots of questions.
A Turners syndrome diagnosis can be frustrating, lonely, and difficult. I still have good and bad days dealing with it. I look forward to becoming more familiar with the TS community and resources, and I hope my story encourages others.