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Revealing your PD diagnosis at work

  • By BakerandShaker

    Hi everyone!

    I would love to solicit your thoughts on revealing your PD diagnosis at work?

    I have been advised by my neurologist, family and friends to NOT reveal it at work because they can use it to terminate your employment. Then, you read that there are protections for being terminated because of a PD diagnosis, but HR groups can be tricky in disguising that reason when you’re let go, so how to prove it?

    PD websites give varying advice: don’t reveal your PD diagnosis until you’re ready to ask for accomodations vs. reveal it because you will miss out on a lot of support, and hiding PD is stressful and exhausting.

    What are your thoughts? Thanks in advance!

    Jennifer (BakerandShaker)

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  • By Jessica.Hall Moderator

    Hi Jennifer!

    Welcome to the community! We are happy to have you here and so glad you found us. We are here to help support you in any way we can. Hopefully, you will get some great feedback from other members on this topic. In the meantime, I have included a link about work and Parkinson’s that may be of interest to you -https://parkinsonsdisease.net/living-with-pd/work/. Thank you for sharing with us and being a part of our community.

    Kindly, Jessica, Parkinsonsdisease.net Team

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  • By annielizzie

    Hey Jennifer,

    I expect it depends on the specific company culture where a person works.

    A co-worker of mine has Multiple Sclerosis and everyone at this company seems to be aware of it. My experience of how her disease is treated is that it is accepted as a part of who she is (like her hair color), and appropriate accommodations are made as necessary. It helps that she is a high performing employee and had worked there for over ten years before this medical situation was diagnosed.

    I would evaluate the company culture very carefully before I made any health or actionable disclosures if I definitely wanted to remain in that company/position/career.

    Good luck with your decision.

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  • By ferg56

    I have worked for my state agency for 23 years. I told them 2 months after diagnosis because I was doing my research to understand my new life, and I let it out then because I don’t like keeping secrets like that and I wanted them to understand the mental strain I was operating under. To understand I may make some mistakes or forget things out of character for me. They were great in their response and willing to make accommodations for me. I felt a great relief!

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  • By DocChris

    I am currently grappling with the same difficult decision. I was diagnosed this past week. I spoke with a trusted consigliere and was advised that once I notify my employer, many protections under ADA and other local State statutes apply. However, one always wonders, “How will I be viewed?” “Will every oversight or mistake at work, that otherwise might be ‘normal,’ now be attributed to PD?” “Will telling my current employer inhibit future job prospects?” “Is this the beginning of the end of my career?”

    In the end, I think I am leaning toward notifying my employer, who I believe will be supportive. It’s really not any of the former questions that are driving my decision.

    PD is a “Family Matter.” It is already having an impact on my spouse and kids. The world is small and even smaller with the complication of social media. I feel it is unfair to swear my spouse and kids to secrecy so my employer doesn’t find out. They need support just as I do. I feel attempting to keep my PD a secret will add undue stress and pressure to my family and me, which is exactly what we don’t need. We need a community of people of care, love, faith, and understanding to help us through this.

    As of this week, my world is different. The world is different for my wife. The world is different for my children. And, the world is going to be different at work. I simply will not be able to completely separate my work and home life, so I am erring on the side of what I feel is best for me and my family.

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  • By ferg56

    Well said DocChris! You’re about ten weeks behind me. Sorry you had to join us. I think you’re doing the right thing. I, too, have kids in my house to consider. I had them hold their tongues until the telling I mentioned. We told our church as well that same week. Everyone has been all I hoped for. Best wishes!

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    • By DocChris

      Thank you so much for the words of encouragement, ferg56. I am hopeful and filled with faith that my coworkers, friends, and communities will be supportive. Best, DC

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  • By Nadine

    I work for a state university, and had no hesitation letting both my boss and my colleagues in my department know. I have slowed down in what I can do, and sometimes instructions do not register with me as quickly as they once did. In addition, I have memory problems with names, etc.

    Everyone is extraordinarily patient and understanding. I do not need any special accommodations right now, except writing down more information that I used to remember so easily, and some days running late because of a “slow day.”

    It is a great office with work in.

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    • By Chris H. Keymaster

      This is great to hear, @nadine! Sounds like a really great work environment. Thanks for taking the time to share with us! – Chris, ParkinsonDisease.net Team

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