What to Tell Your Boss and Coworkers About a Parkinson's Diagnosis

When you receive a diagnosis of Parkinson’s disease, you eventually have to decide when to tell your employer, and how much to say about your condition. This most likely raises several concerns for you, so read on to see how to handle the issues involved.

First, keep in mind that only you can decide whether informing your employer is going to help you or hinder you in your efforts to stay on top of the disease. Still, many people with Parkinson's may find that informing their employer of their diagnosis is the right thing to do for them.

Let's face it: Coping with the disease is easier if you don't have to hide anything from coworkers. It's also easier to avoid fights with human resource personnel or benefits departments about benefits that are due to you and your family if the company realizes you have a chronic disease like Parkinson's.

Here are some tips for informing and interacting with bosses, colleagues and benefits departments following your diagnosis with Parkinson's disease.

man and woman talking in office
Ezra Bailey / Taxi / Getty Images

When to Tell Your Supervisor

It is probably not a good idea to inform your supervisor about your health issue right after you receive the diagnosis. Give yourself time to absorb the news, and take some time to educate yourself about Parkinson's disease and how it will progress over time.

Also, you don't want to talk to your boss about Parkinson's if you yourself know very little about the disorder and can't answer questions. Learn about the condition, and ask your doctor and other people you know with Parkinson's about the best way to approach your boss with the news. Try to anticipate the possible reactions and concerns, and learn the answers to the questions that may arise.

Of course, don't wait too long to inform your employer about your diagnosis. Unfortunately, this is a visible disease, and your supervisor or coworkers may start to wonder about your health if you are noticeably trembling or shaking, or if they realize you rarely smile anymore.

In some situations, you will need to access company benefits to help you pay for treatment necessities, including medications and special procedures. It may help you if your supervisor understands your situation and can sign off on any requests for time off or special accommodations.

How to Tell Your Supervisor

Before you tell your supervisor about your diagnosis, think about how he or she will take the news. Your supervisor's primary responsibility is to the company’s work obligations, so the first thing he or she will wonder (whether you like it or not ) is “How is this going to affect company workflow and productivity?"

Before you have this conversation, do a little research on your company’s benefits or perks, such as flexible work hours, telecommuting, working from home one or two days a week, or perhaps shifting to a less physically demanding type of work. You can mention some or all of these options when you talk to your supervisor.

Here are some potential talking points for your conversation with your boss:

  1. I’ve been diagnosed with Parkinson’s disease. It is a relatively common disorder that will, over time, affect my muscles, making it harder for me to walk or to use my hands for fine motor skills. The good news is that progression is slow, available treatments are effective, and it may be years before my symptoms really have an impact.
  2. Here is a fact sheet on Parkinson's my doctor gave me, and here is a letter from my doctor explaining the diagnosis. My doctor is confident that I will be able to perform my duties adequately for the next several years.
  3. I am telling you about my diagnosis now because I will need to access some special health benefits that the company offers. I will be contacting human resources to talk about my options.
  4. I know this diagnosis of mine raises all sorts of questions, but I’m confident that I can still do my job and do it well, and that together we can find solutions that will benefit us both.
  5. The only area where my doctor and I foresee any potential problem is (here, fill in any potential problems you expect). My doctor and I have developed the following strategy to handle this potential problem as follows (here, fill in your potential solutions to those problems).
  6. Bob in accounting was diagnosed with Parkinson's five years ago and he is still doing his job and doing it well. He has agreed to talk with us about his and his team’s experience in coping with the disorder at the office. He tells me that only a handful of adjustments were required at his office to accommodate his needs.
  7. Do you mind if I inform my immediate coworkers?
  8. Thank you for this meeting and for your support.

How to Tell Your Coworkers

You will need to decide who among your coworkers you want to tell. It's actually a good idea to tell your close coworkers because getting firsthand reliable information from you about your symptoms and your diagnosis will help to stop gossip or uninformed speculation about you and your abilities.​

By telling selected coworkers about your diagnosis, you can maintain some control as to how people react to you, rather than the other way around. Give the people you interact with on a daily basis solid, reliable information about you and your diagnosis — that way, they won't need to guess, or listen to rumors or gossip.

Consider providing to your coworkers the same fact sheet on Parkinson's disease that you gave to your supervisor. Tell them that they can use these facts to rebut any inaccurate information they might hear and that they should feel free to speak to you directly if any concerns or questions come up.

Emphasize that you and your doctor do not expect your abilities to decline anytime soon and that you fully expect to be able to do your job as well as you always have. Finally, tell them that you do not need anyone to cut you any special slack but that you just wanted them to know what was going on with you.

Understand Your Rights Under the ADA

After you inform your supervisor and your coworkers about your condition, the next item on your workplace agenda should be to explore and potentially access company benefits due to you and your family because of your Parkinson’s disease-related disabilities.

The Americans with Disabilities Act (ADA), which is enforced by the Equal Employment Opportunity Commission, prohibits workplace discrimination due to disability as long as you can demonstrate that you can perform the job in question when reasonable adjustments are made to accommodate you.

The disability you have must involve substantial limitations in some major life activities such as seeing, hearing, speaking, walking, breathing, performing manual tasks, learning, caring for oneself, and working.

Bear in mind that the ADA doesn't always apply to small businesses that employ fewer than 15 people. In this case, if "reasonable accommodation" for your situation requires imposition of unreasonable costs or undue hardship on other employees or the company itself, then your employer need not employ you.

Tips for Accessing Disability Benefits

Once you have some idea of the laws that protect your workplace rights after you become disabled, it's time to have a talk with your company’s benefits personnel. These are the people who can give you detailed information on the benefits available to you (and your family).

You will want to ask for specific information on company and insurance policies regarding:

  • disability insurance payments (typically, the policy pays you a percentage of your salary while you’re disabled)
  • use of flexible spending health accounts (for these accounts, you contribute a specific amount of your paycheck that can later be used to pay unreimbursed medical expenses, such as copayments and deductibles
  • early retirement possibilities
  • payments out of retirement accounts
  • medical insurance coverage for medications and for special procedures
  • long-term care insurance (this is insurance to pay for daily care of disabled people either in their own homes or at a nursing home or similar facility)

You also may be eligible to access disability or retirement benefits from the Social Security, Medicare, and Medicaid programs. For those, the best source of information is the Social Security Administration.

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