Should You Tell Your Boss About Your Diagnosis?

In May of 2023, a neurologist confirmed my suspicions about the symptoms I’d been experiencing: I had Parkinson’s Disease.

Putting a name on my condition gave me some answers, but ultimately created a host of new questions. Chief among them: what, if anything, do I tell my boss?

Health is a touchy subject in the workplace. Each company has its own policies; there are laws governing what can and cannot be discussed, along with protections such as the Americans With Disabilities Act (ADA). Bumping up against these written rules are office politics and concerns about your own career.

In Parkinson’s Disease for Dummies, Michele Tagliati and Jo Horne recommend a four prong approach to making the decision about how and when to approach your employer:

Assess your abilities. Put together an honest assessment of your position requirements and whether or not you can continue to fulfill them.

Verify your assessment with your doctors. Discuss your job responsibilities with your PD doctor and get a written medical evaluation of your ability to perform those duties.

Explore workplace accommodations. Research what the company can offer to accommodate your changing needs and what it has offered other employees in the past (such as a different workstation configuration or a flexible schedule so that you can work in-house when your symptoms are well managed or work from home).

Know your workplace policies and legal options. Familiarize yourself with the options that the Americans With Disabilities Act (ADA) or other government programs may offer.

The Parkinson’s Foundation has a good basic description of the protections offered by the ADA:

By law, people with Parkinson’s are protected against discrimination in employment practices. The ADA requires employers to make reasonable accommodations for employees, as long as they do not impose an “undue hardship” on the employer’s business. A reasonable accommodation is defined as “any modification or adjustment to a job or the work environment that will enable a qualified applicant or employee with a disability to participate in the application process or to perform essential job functions.”

I chose to tell my boss about the diagnosis, and ultimately let my co-workers know as well — the symptoms were visible at times, trying to keep a secret seemed like a hassle, and I decided I really didn’t care who knew about it.

That decision worked out well for me, but your mileage may vary. Educate yourself, and weigh the pros and cons carefully.

For more detailed information and advice about how to navigate the thicket of laws, rules, and challenges of disabilities in the workplace, a good place to start is the Job Accomodations Network, (JAN) a service of the US Department of Labor’s Office of Disability Employment Policy. There is information for both employers and employees. JAN can be reached at (800) 526-7234 or (877) 781-9403 (TTY).

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Bonus For Those Who Read to the Bottom

Molly Tuttle tackles Jefferson Airplane

Donny & Marie Osmond sing Steely Dan. Warning: once you see this, you will never be able to unsee it. There is singing, dancing, ice skating, and, um, “comedy.” For seven minutes. It will haunt your dreams.

12 responses to “Should You Tell Your Boss About Your Diagnosis?”

  1. mmmeow60 Avatar
    mmmeow60

    Like! (I tried to select “like,” but I need a password and the surrendering of my firstborn 🤣. Cat

    Get Outlook for Androidhttps://aka.ms/AAb9ysg

    Like

    1. shakinstreet.com Avatar

      I’m not sure why you need to log into WordPress to “like,” but you can comment without a password. Now that I’ve finally gotten Google to notice this blog, I can move on to other technical issues.

      Will investigate.

      Like

      1. mmmeow60 Avatar
        mmmeow60

        No problem! Just wanted you to know I’m following along 😻

        Get Outlook for Androidhttps://aka.ms/AAb9ysg

        Liked by 1 person

      2. shakinstreet.com Avatar

        WordPress tech support informed me that in order to “like” a post, one must have a WordPress account and be logged in. I’m not a fan of that rule — it seems to me that hitting “like” should be easy — but WordPress makes the rules. I’ve heard from a couple of other readers who expressed frustration over this, so I’m just removing the “Like” button from the blog.

        Thanks for bringing this to my attention, and sorry about that!

        Like

      3. mmmeow60 Avatar
        mmmeow60

        Ok, I’ll just Like in theory….so, we visited a friend in Colorado — turns out her 64-year-old husband has had Parkinson’s for a couple of years…hand tremors on tight side. I told him about your blog, and he’d like to read it– should I just send the http://www.shakinstreet.com?

        Get Outlook for Androidhttps://aka.ms/AAb9ysg

        Like

      4. shakinstreet.com Avatar

        Yes, that’s the right address. Glad to have hm as a reader!

        Like

  2. Russ Avatar
    Russ

    What the law says vs. how things play out in real life is a very legitimate concern. Having managed situations like this before, I 100% agree that it is essential that you know what your legal rights and company policy protections before you take action. As in all aspects of health care, you as a patient, have to be prepared to be your own strongest advocate. If you are lucky your boss and HR will have your back, but sadly that’s not always the case. As Phil points out, there are patient advocacy groups out there that can be a tremendous help and a great source of information.

    I also commend your willingness to listen to the voice of the people and restore your bonus section. I have heeded your warning and won’t watch the Donny and Marie video, but there is a value in just knowing it’s there.

    Like

    1. shakinstreet.com Avatar

      I was lucky enough to work for decent people, and have no complaints about the way things turned out. But I have heard many horror stories about people who expected to be treated fairly by their employers, only to find themselves under the metaphorical bus.

      It’s a “trust but verify” world.

      That Donny and Marie video is an astonishing historical document. A lot of people were involved in its conception and production. Apparently they all decided it was good enough to air on national television. There is no indication that either Donny or Marie had any idea what they were singing about.

      Like

  3. Kevin Rowan Avatar
    Kevin Rowan

    While your diagnosis is difficult and troubling, you seem particularly equipped to navigate it. Your willingness to investigate, share, and write/work it out translates to positive action, which is also power.

    I also chose to forego viewing the Donny and Marie video, despite my crush on Marie dating back to 1975. I did view the Molly Tuttle clip, expecting to be underwhelmed, as I like very much the concept video of this song is full costume. Once again, I was wrong. Incredible musicianship on this one. Well played, in every sense.

    Take care my friend.

    Like

    1. shakinstreet.com Avatar

      Glad you liked the Molly Tuttle — she and the band absolutely nailed the cover.

      For the record, I have watched the Donny and Marie video four times. I am taken aback by the sheer number of bad decisions that had to be made:

      “Let’s have them sing a Steely Dan song!”

      “You know what would make this even better? Ice skaters!”

      “We should stop the whole thing in its tracks so that Donny can pretend to be upset about a caterpiller/false eyelash on the ice!”

      All of these decisions were approved, and much money was spent on the set, the costumes, the musicians, and the dancers/skaters. Real human beings wrote this, choreographed it, rehearsed it, and recorded it. THIS THING WAS ACTUALLY MADE!

      In summary, you should watch it.

      Like

  4. Dina Elizabeth New Avatar
    Dina Elizabeth New

    Phil! I am sorry about the Parkinson’s (and thrilled you have this going along with the new normal to educate and offer an outlet for it all. I heard about your news from Michelle yesterday.

    I didn’t have to go through this very important and multifaceted thought process after I came home from a skiing trip with a TBI and was in a coma for weeks. Everyone knew what happened because I couldn’t show up for work or life. But, like you, I think I would ultimately tell my boss and coworkers. Like you, “trying to keep a secret seemed like a hassle, and I decided I really didn’t care who knew about it.” I went through that part when I met new people I spent considerable time with in the years after the accident and still had some brain-injury leftovers.

    Humor and gratitude got me through the worst of times. And I have no doubt that you won’t let humor be your guide, too.

    Consider me haunted, btw! And dare I say that looked super natural for Donny and less so for Marie. Donny on ice. Wow.

    Cheers,

    Elizabeth

    Like

    1. shakinstreet.com Avatar

      Good to hear from you, Dina. You’re in a better position than most to appreciate the need, when we have a life-altering condition, to adapt and move forward. And you’re right — gratitude and humor definitely help.

      Like

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I’m Phil Bernstein

I was diagnosed with Parkinson’s Disease on May 25, 2023. At the time, I was only vaguely aware of Parkinson’s — primarily from articles in People about Michael J. Fox. And I didn’t know anyone with the disease.

Now, I know a lot more about the illness, and I’ve joined the Parkinson’s community in my hometown of Portland, Oregon.

I’ve found that writing helps me think through challenges, and this illness definitely qualifies as a challenge. I’ve started Shakin’ Street to help me think through the various obstacles, tools, and resources that a newly-diagnosed Parkinson’s patient encounters along the way.

I hope some of these posts help you address and tackle your own challenges.

Let’s connect