Yet, while I was in college, I felt a whole new level of emotions. When I was a junior, I felt a mixture of sadness, then anger, and then resentment. I was worried about my next step in life. I was afraid to ask my mom to discuss my family planning future with my geneticist or endocrinologist. “What if I can’t have kids?” I’d often wonder.
Read moreSelf-Advocacy, Communication, & Attaining Individual Freedom →
Self-advocacy for me looks a lot like communication between my healthcare team, insurances, pharmacists and my social system. My social system includes people like patient assistance managers, but it also includes my parents. Sometimes it can include social workers who are employed by hospitals or insurance companies. Making sure we are all on the same page and that my medical treatment is available and affordable, on top of managing daily life is a big part of my own autonomy and individual freedom as a disabled female.
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