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How and When to Tell Your Boss and Coworkers About Your Parkinson's Disease

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Updated March 03, 2009

How and When to Tell Your Boss and Coworkers About Your Parkinson's Disease
woodsy/© 2001-2008 HAAP Media Ltd

When you receive a diagnosis of Parkinson’s disease you eventually have to decide whether to tell your employer. 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. Many people with PD may find that informing their employer of their diagnosis is the right thing to do for them. Coping with the disease is easier if you do not have to hide anything from coworkers or fight with human resource personnel or benefits departments about benefits due to you and your family when you have a chronic disease like PD. Here are some tips for informing and interacting with bosses, colleagues and benefits departments.

Your First Decision Is WHEN to Inform Your Supervisor About Your Parkinson’s Disease

It is probably not a good idea to inform your boss about your diagnosis right after you receive the diagnosis. Give yourself time to absorb the news. Take some time to educate yourself about PD and its course over time. You do not want to go to your boss about PD if you yourself know very little about the disorder. So take some time. Learn. Ask your doctor and other persons with PD about how to tell your boss the news. Try to anticipate his or her reactions and concerns. To do so you will need time to think about your options and to learn about your disease.

On the other hand, do not wait too long to inform your employer about your diagnosis. Unfortunately, this is a visible disease, and your boss or coworkers may start to wonder if you are trembling or shaking, or if they notice that you rarely smile anymore. Before things progress too far it may be better to inform your boss at least about your diagnosis. In some situations, you will need to access company benefits to help you pay for treatment necessities including medications and special procedures. This need to access company benefits may sometimes be facilitated if your boss knows your situations and can sign off on absences and other special requests.

Dealing with Misconceptions and Concerns

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

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, shifting to a less physically-demanding type of work, and so forth. You can mention some or all of these options if you deem it necessary.

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

  • 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 it may be years before symptoms really have an impact.
  • Here is a fact sheet on PD my doctor gave me and here is a letter from my doctor explaining the diagnosis and his confidence that I will be able to perform my duties adequately for the next several years.
  • I am telling you this now as I will need to access some special health benefits that the company offers. I will be contacting HR and benefits to talk about my options.
  • 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.
  • The only area where I and my doctor foresee any potential problem is…My doctor and I have developed the following strategy to handle this potential problem as follows…
  • Bob in accounting was diagnosed with PD 5 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.
  • Do you mind if I inform my immediate coworkers?
  • Thank you for this meeting and for your support.

Informing Your Coworkers

You will need to decide who among your coworkers you want to tell. Before you talk to these people remind yourself as to WHY you are telling them anything in the first place. 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 round. Give the people you interact with on a daily basis solid, reliable information about you and your diagnosis so they do not need to guess or listen to rumors or gossip.

Give these people the fact sheet on PD that you gave to your boss. Tell them that they can use these facts to rebut any inaccurate information they might hear. Tell them that they should feel free to speak to you directly if any concerns or questions come up. Emphasize the fact that you and your doctor do not expect that you abilities will decline anytime soon and that you fully expect to be able to do your job as well as in the past. Tell them finally 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.

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  5. Parkinson's Disease and Work Concerns - What to Do About Work When You Have Parkinson's Disease

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