By way of introduction, I am a 49-year-old man who was diagnosed with Parkinson’s disease (“PD”) two years ago. Those of us who are diagnosed at a relatively young age are faced with a significant question; how do we handle our condition in a work environment? Should I let people know about it? Should I try to hide it? Even if people in my workplace know I have Parkinson’s, should I hide it from those outside my workplace? In some cases disclosure may lead to a difficult work environment, in other cases lack of disclosure may cause additional stress as the person with Parkinson’s (“PWP”) struggles to hide their condition.
I will not be writing from a legal perspective; I am not a lawyer, and I will not pretend to know the legal issues surrounding PD in the workplace. Instead, I will write about my decisions and experience in the hope that others will benefit from seeing the results. I have chosen to be open about my condition in my workplace, and I will soon be stepping out into a broader group with an acknowledgment of my condition. This is my choice, and for many it would be the wrong choice. In the long run it may prove to be the wrong choice for me as well, but for now it has given me peace. This chronicle is intended to highlight the actual results that I see as I am transparent about my condition.
My decision to be open came about in large part because I feel less stress knowing that people know what I am dealing with. As those of us who are familiar with PD know, stress can bring on our symptoms in a major way. In disclosing, I have reduced my stress and eased my symptoms. The questions I hope to address include:
- How do people respond to my PD in a professional environment?
- What is appropriate disclosure? Clearly there is a time and place for everything. I don’t plan on walking up to people I am meeting and saying “Hi, my name is Bill, and I have Parkinson’s disease!” That would clearly be inappropriate, unprofessional, and selfish. When is it appropriate to say something, and how should you do so?
- How do you handle your medication? As those of us with PD know, your timetable is very important. Taking a dose a half hour or an hour late can lead to discomfort, symptomatic response, and cascading difficulties. What do you do if you are in a meeting?
- What other workplace issues arise? What have others with PD experienced?
I am interested in finding out about what others have done, and how that has worked for them. To the extent possible in a blog format, I’d like to document the issues that both I and others face in the workplace. The goal of this blog will be to maximize the ability of PWP to successfully work, support themselves and their families, and to contribute to society. I welcome any suggestions and comments that help to accomplish these goals.
As someone who is still in the workplace, I want to be sensitive to those I work with. Because of this I will be more general than some may like, but it is important to recognize that this chronicle is about my journey in the workplace while dealing with PD. I have no desire to hurt or embarrass anyone I come in contact with. I can say that my workplace has been nothing less than fantastic since my diagnosis and disclosure; but as I write in the future I will obscure whether I am writing about my own experience or the experiences that others share with me. It is one thing for me to be transparent with my own condition, it is another entirely to betray the trust of those I work with. The only way I will be public with specific incidents in my own walk with PD will be if I have explicit permission to do so from those involved in the story.
This post is the first in an ongoing series considering Parkinson’s in the workplace.