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Should you disclose PD diagnosis to an employer?
The reason I am asking this question is that I will be dealing with a new principal this upcoming school year. I did share my diagnosis with my last principal, and she was very understanding and accommodating. I don’t want my new principal to assume things when she sees me stumble or walk down the hallway in an unusual manner. People can assume drug or alcohol usage when they see certain characteristics associated with PD. I also want my principal to understand that I may need to take days off because of my PD. What are your thoughts?
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6 Replies
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I chose to tell my principal (I am also a teacher) and colleagues about my Parkinson’s diagnosis. That gave me the “right” to do unusual things (like take a cat-nap between classes) or get a schedule adapted to my limitations. But I live in Sweden where it is hard to fire a person. If I lived somewhere that it is easy to get fired, I might not have been so open.
In the years since I retired I actually got a lot better thanks to taking a teaspoon of powdered Mannitol (a sugar alcohol) in my orange juice every day. So my Parkinson’s isn’t as noticeable and most of my symptoms have become less intense. (Mannitol prevents clumps of the protein α-synuclein from forming in the brain — a process that is characteristic of Parkinson’s disease.)
Good luck!
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I was very open with my employer, in part because my job performance had slipped and I wanted them to understand why — and that I was doing something about it. I was on Mirapex at the time and the stuff made life a living hell. I couldn’t sleep at night but found plenty of opportunity to sleep at work. If I had not been open with my boss about PD I would likely have been fired. As soon as I got off the Mirapex and on carbidopa/levodopa my good sleep habits returned along with job performance. However, the project I was working on at the time was nearing completion and with no new work coming I was facing an almost certain layoff, so I was in the job market.
I found a good position with a company doing the same kind of work in the same area. It was perfect and I told myself that I would consider it a success if I lasted three years. With this employer I was again open and frank about my limitations, which were not significant when I started, but at the five year point I started having serious problems. I could work on my main project just fine — it was work I had done for 25 years — but on newer projects, where I had to learn a lot of new, complex detail (I am an engineer), I couldn’t keep up with anyone else. I had to read paragraphs over and over to burn them into my brain. I was apathetic about the work, except for my pet project. At the six year mark I realized that I needed to give it up and retire. I announced my retirement for early 2020, but was persuaded to continue on a part-time as-needed basis. Then COVID hit, and that provided a convenient excuse for them to lay me off. They gave me a generous severance package. I really cannot complain about the way I was treated by either company. I turned out to be the sacrificial lamb — our division was understaffed and needed to add people, but the corporate guys wanted every division to feel some pain, so they were required to lay off one person. I was the lucky one.
I would not do anything different if I were in the same situation again, but every situation is different. If one does not have a good relationship with their employer, having PD may get them fired, particularly in small companies that are sensitive to cost.
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Yes! Absolutely! You are entitled to accommodations! If your employer has a problem with that, that’s called discrimination. Furthermore, why hide your PD? Personally, I’m glad to explain why I am the way I am.
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Thank you for your response. It’s very reassuring. I’m leaning towards telling my new principal when the right time presents itself. I like getting input from others though.
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I support alerting your employer. That avoids the potential for them to think you are intoxicated or on drugs if your movements are impacted by PD. It makes people be a bit more on the lookout to provide you help and understanding, if needed.
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I was diagnosed almost 8 years ago and my initial reaction would be to tell my employer. Unfortunately I worked in a very stressful environment and as my Parkinson’s progressed and the stress of my job progressed I got to a point where I had to step down from my position.
I was a salaried manager for 19 years when I could no longer perform that position they offer me an entry level position requiring a GED and it was hourly.
I left the company and filed suit against them for failure to help me or offer any assistance with my Parkinson’s during the point in which they knew I was struggling what I found most unsettling was during discovery they provide my attorney with emails between the president and vice president of sales discussing issues with my work performance. So they found the time to documentthe difficulties I was having but never offered me any assistance.
Ultimately it’s a personal decision that you need to make. I would highly recommend though if you inform them that you document everything you can.
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My HWP is too afraid to tell him employer. They usually “reorganize” have layoffs every December. So, they don’t have to give you a reason to let you go (TX is a right to work state). So, it would be easy for them to not show discrimination. PD is affecting his job some, mainly with his mind, not his body. Not enough to go out on long term disability that he pays for, but by the time he would qualify for that, he would have already lost the job due to poor performance, most likely. He’s only 55, diagnosed 2014. I’m guessing we might need to consult with a disability insurance attorney to help us to understand what paper trail we need to be laying with his doctors, etc. for an eventual long term disability request.
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