Advocating for Your Health, and For Others
When I began my PhD program in sociology in Michigan in 2007, I never imagined that eight years later, I would have two chronic illnesses, two Master’s degrees and a PhD, and be living in New York with my boyfriend, of now three years. I never imagined that I would transition from a field I thought I loved to a field that I cannot imagine my life without.
I was diagnosed with lupus and RA at the end of the first year of my PhD program. My illnesses were not well-received by my professors and fellow students, and I mostly dealt with them in secret. I wrote about this previously in the post Chronic Illness And Higher Education: Strange Bedfellows Or Bitter Rivals. Because a PhD is so tied to academia, being open about my illnesses could have hurt my chances on the job market. But before it even went to that extreme, I realized that while I wanted to finish my PhD, I no longer wanted a purely academic career.
I saw how unwelcoming higher education could be to students with chronic illnesses and disabilities, and I made up my mind to change that. While pursuing my PhD, I contemplated getting a Master’s degree in public health or social work, but those never felt right. I happened to randomly be reviewing a book for my blog in which the author was a student in the Master’s of health advocacy program at Sarah Lawrence College. Immediately, I was intrigued.
Following my passion
I started looking into the program, and it felt right to me in ways that my PhD program didn’t. When I started the PhD program, I wanted to be an academic sociologist, but when I got sick, professors who knew me from undergrad, and knew what I was capable of, started to doubt my abilities solely because I was sick. I knew I didn’t want to spend my life in that kind of environment. As well, blogging had become such a big part of my life, I didn’t want to give that up. I knew an academic career just wasn’t right for me anymore.
My family was incredibly supportive and told me that the Sarah Lawrence program sounded like what I had been talking about for four years. They supported me through undergrad, the six years it took me to get my Master’s degree and PhD in sociology, and through two years in health advocacy. That’s 12 years of higher education, and they have stood by me 100 percent the entire time. I wouldn’t have been able to take the leap of getting a second Master’s degree without them.
While working on my PhD, I became a tireless advocate for myself as a patient, but I wasn’t sure how that would translate into advocating for other patients. In fact, I have found advocating for others to be easier than advocating for myself. I found that without having the emotion that I get when I feel someone is standing in the way of my health, I am able to advocate in a clearer and more objective way, while still exuding empathy and compassion. And as a patient, I know firsthand what an exhausting and frustrating experience navigating the healthcare system can be.
The Sarah Lawrence program has been amazing. My illnesses are what brought me to the program. Staff, teachers, and students in the program appreciated them and didn’t see them as a liability. I learned an immense amount about healthcare and what being a patient advocate really means. I learned about ethics, law, and policy. I learned about the history of the medical profession in America, and the economics of health. I had three great internships which led to my capstone project in which I created a patient resource about how to navigate college with lupus, and a physician resource about how to have conversations with their patients about going to college. No one should hear what I heard from my rheumatologist – that they should quit school and move back home with their parents. And then what? Without money or insurance? Die?
I am so grateful for all of the opportunities I have had in my life, especially educationally. I take nothing for granted. While being chronically ill can be a negative experience and one of the worst things that can happen in a person’s life, my illnesses have brought me here. And for that, I am grateful, as well.
Becoming a professional health advocate
This graduation has special significance because I did not walk for graduation from undergrad. I went to graduation, but there were about 3,000 other students in my graduating class, so no one got called up individually. I didn’t walk for my Master’s degree, and I didn’t walk for my PhD because I had moved to New York and was finishing my first year of my second Master’s degree. This is the first time I will walk across the stage, diploma in hand.
It also has significance because my dad and grandfather both passed away during the course of me completing my second Master’s degree. Losing these two people has had a profound impact on my life, and I am sad that they weren’t here to see me walk across the stage. But I think they would have been proud that I followed my heart, and am now attempting to do what I love.
I learned when I got sick in my PhD program that graduate school does not suspend the rest of life. Life happens. I guess I was naïve enough to think that in the two years I was working on my Master’s degree in health advocacy, that’s all that would happen. But obviously, life got in the way in some of the crueler ways imaginable. Despite it all, I did it, and I can now call myself a professional patient advocate.
One of the first people I told in my PhD program about my illnesses told me that my illnesses would make me a more empathic sociologist. I was deeply offended by this at the time. But that person was right. Lupus and RA have made me a more empathic person. I am able to put myself in other peoples’ shoes—lupus and RA really showed me what I am really meant to do with my life.
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Leslie wrote for HealthCentral as a patient expert for Rheumatoid Arthritis (RA).