When I was diagnosed with Young-Onset Parkinson’s Disease in 2011 at age 33, I was full-swing into my career as a media studies professor in California. Up until that point, I had been writing for journals, speaking at conferences, and applying for tenure-track positions. That all changed once the symptoms became too much for an ambitious young academic to bear.
I suddenly went from outspoken and involved to being someone who barely had the stamina to make it through an 8am lecture. I thought my career was over. I decided I would need to disclose my diagnosis since it was obvious that something was wrong. To my school’s credit, they sought to accommodate me by switching me to teaching online courses. I knew my dream of becoming a full faculty member was likely over, but at least I could still teach and write.
While I was able to continue working in a more limited capacity, many of my friends in the Parkinson’s community have not been so lucky. My support groups are filled with examples of people diagnosed in their 40s and 50s, and asked to retire or who mysteriously became the only victim of an unplanned layoff. This type of discrimination is illegal but proving it is extremely difficult and often not worth the stress to someone with serious health problems.
By 2015, I had sufficiently grieved the loss that came with learning I had an incurable chronic illness, and I thought it was time I tried to be more of my old self again. For me, this meant fighting back against the illness – staying fit and healthy and trying to live my best life. It might come as no surprise to those who know me that moving forward also meant using my experience in a meaningful way to help others; in other words, advocacy.
In order to be an advocate for people with Parkinson’s – to raise awareness of the illness, support efforts for a cure, help others with the illness, and help develop empathy in those without the illness – I knew I would need to go public with my diagnosis. I’m well aware that anything published on the internet is likely to be up for all time, so this bears the question: Am I sabotaging my own future by so publicly revealing my diagnosis and being so readily defined as someone having a serious illness? Will future employers search my name online and find out I have Parkinson’s? Actually, I certainly hope so. Here’s why.
- I have Parkinson’s and I can’t hide it. What is the use of keeping my illness private if it is quite literally written on my face? Hiding it could make sense if I lived in a small town, on a farm, by myself, and wanted to be left alone. But I don’t live on a farm. Instead, I live a somewhat public life through my writing, my teaching, my advocacy and political work, and on social media. If we meet in person, the elephant in the room, so to speak, is out of the way, and we can move forward immediately.
- Future employers can see how hard I work on things I’m passionate about. Everyone seems to want to curate and control their online presence these days, and for good reason. Employers are known to look at social media to see what their applicants and employees are sharing publicly. Searching my name will return results about the book I’m writing, the app I’ve written, the website and news feed I distribute, and interviews I’ve given. Wouldn’t you want someone like me on your team?
- Instant recognition. Back when I was trying to hide my illness from the public, I had an experience that really affected me negatively and changed my thinking. In 2013, I decided to apply for the MBA program at the University of Washington. Not telling them about my illness, I was invited to their group interviews – essentially, I looked good on paper, and they wanted to know me in person. I hadn’t started taking medications at that time, and after struggling with stiffness and slow movements, I was later rejected from the program because they said I seemed “bored and disinterested.” I tried to explain my illness to the program directors and asked them to reconsider but they would not. The next year I applied again, making my illness clear in every essay and during the group interview. This time I was accepted and eventually was voted by my class as a class representative, won a social entrepreneurship competition and was well respected by my peers and by the program officials. The bottom line: without sharing my illness, I never would have even gotten my foot through the door.
- Living an authentic life. I am very much into living an authentic life. I consider myself an honest and loyal person, someone who values fairness, and who wears his emotions on his sleeve. I’m not interested in hiding something like a major illness from the world. For better or for worse, Parkinson’s and I are connected, likely for life. Everything I do in life will be viewed in light of the fact that I have Parkinson’s. In many ways, this brings purpose to everything I do. For example, I have run for public office in the past, and if it seems appropriate, I may so again. The people who are my would-be constituents must know that having this illness, I don’t take on obligations or projects willy-nilly. Instead, I ask myself “can I make a difference,” and only commit if I know I can. If I run for public office again, it would be with the fervent desire to work with purpose, or else I would see no point. The same is true for anything I do in my life.
I believe that revealing my illness to the world will do more good than not. While I’m worried that I might be underestimated by someone who doesn’t understand Parkinson’s, I’m not afraid to be labeled as someone with an illness – having Parkinson’s has led me to help inspire thousands of people struggling with this disease, so I wear it as a badge of honor.
Now that’s something worth revealing.
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Nick Pernisco is the Parkinson’s Warrior, a person with Parkinson’s who has dedicated his life to helping others with Parkinson’s. Get the Parkinson’s Warrior book here. Join the discussion on Facebook.