Making the decision
Recently, the beloved actor Alan Alda went public with the fact that he was diagnosed with Parkinson’s disease (PD) three and a half years ago. According to his public statements, the reason he decided to tell the world about this now is because he had given a few television interviews recently and was concerned someone would see his thumb twitching and then turn it into a “story from a sad point of view.” He wanted to present the information on his own terms. And his own terms were very positive – he has some minor symptoms, exercise is proving to be helpful, and mostly he is keeping very busy with a number of projects and not focusing on his PD.
Alan Alda’s decision to disclose his PD diagnosis likely reverberated with many of our APDA community who are also in the midst of deciding what to do about their own disclosure. Should I tell my immediate family? My extended family? My friends? My employer? It’s important to note that there is no right or wrong decision. It is always your choice when and to whom you disclose. Everyone needs to consider this decision in the context of his/her own life. Perhaps you can start by discussing your PD with just your spouse or partner, or a dear friend, and then at your own pace, slowly expand the number of people who know.
Disclosure to specific groups
1) Young children – disclosure to the young children of a parent with PD can be particularly difficult. Remember however, that even small children will pick up on cues that something is wrong and if it is not explained to them, they will likely fill in the blanks with their own imaginations.
2) Employers – disclosure at work opens up a whole array of issues. Many are hesitant to tell their employer about their PD as they feel it may affect their career and advancement within their company. Although PD should not play a role in an employer’s decision about career advancement, in practice, this unfortunately may occur. If symptoms of PD require you to ask for an accommodation at work, however, then it is time to disclose. It is reassuring to know that the Americans with Disabilities Act requires employers with 15 or more employees to make “reasonable accommodations” for a disabled worker as long as it does not present an “undue hardship” to the company and the employee can perform the job’s essential functions. This law protects a person from workplace discrimination when he or she asks for accommodations. These accommodations may include working remotely, instituting flexible hours or installing adaptive equipment. In addition, the Family and Medical Leave Act (FMLA) requires companies with 50 or more employees to provide up to 12 weeks of unpaid leave during any 12 month period to deal with an illness, among other reasons, without fear of losing their job or medical insurance. Disclosure of PD at work allows a person to tap into the benefits of these laws.
How to decide?
As with any big decision, it may be helpful to review a list of pros and cons to help you think it through. As a neurologist, I have heard a wide variety of pros and cons on this topic from my PD patients over the years. I’ve shared some of the more common themes below to help you get started, and of course you may add others that are personal to you and your specific situation.
General considerations concerning disclosure to friends and family:
Scenario 1: You choose not to disclose:
- Having PD is my own personal business and there is no need for me to share it.
- There are negative stereotypes concerning what a person with PD is capable of and I do not want people to look at me and see someone with PD. If they don’t know, they won’t treat me differently.
- I don’t have to answer questions from people about PD, my prognosis, or how I’m doing/feeling.
- If I don’t tell my employer, it won’t affect my job/career. There is no requirement to share my medical information with others.
- As my symptoms progress, I will struggle with how to hide my PD.
- Secrets can weigh heavily on my mind and cause stress and anxiety.
- I will get no support from my friends/family because they will not know what I’m dealing with.
- If I do not tell people about this diagnosis, they may figure it out on their own and draw their own conclusions. Or people will think I have something even worse.
- If I do not tell my employer, I won’t be able to ask for things I need to be an effective employee. People at work may misunderstand my symptoms and issues. If I do not disclose at work, I won’t be able to utilize FMLA.
Scenario 2: You choose to disclose:
- By being proactive and telling people, I can control the narrative and decide how much information I am comfortable sharing.
- I will have support from my friends and family. It will help to have people to talk to and lean on when I need it. By talking to them, I can also raise awareness amongst my friends and family. Perhaps I can use my network to raise money for the cause or recruit controls to a clinical trial for PD.
- I will relieve myself of a huge stress. It is very difficult to hide a tremor or other physical signs from everyone. It will be a massive relief to not be constantly concerned that someone will figure out that I have PD.
- By telling my employer/coworkers I can end speculation and also possibly request adjustments or accommodations that will help me do my job better and for longer.
- There are negative stereotypes concerning PD. It is possible that people may view me differently and start treating me differently.
- I will have to answer a lot of questions about how I’m doing. I don’t want to become the PD poster child.
- Everyone will be watching me and will feel sorry for me.
- My employer may start to view me differently and this may affect my career.
As you can see, there is a lot to think about, and you need to do what makes you most comfortable. However, I have personally found among the people with PD whom I have met and treated, most find it very beneficial to share their PD diagnosis at least with some people in their lives and have found the support they receive from those people to be a tremendous help.
How to disclose?
If you decide to disclose, you will then need to decide how to do it. One option is to keep it simple and send your friends and family to a well-respected website such as apdaparkinson.org where they have the opportunity to gather more information about PD if they would like.
Tips and takeaways
- Disclosure – when and to whom – is always your decision.
- Weigh the pros and cons of disclosure and disclose at your own pace.
- Disclosure at work can be more complicated than disclosure to family and friends. If you do need to ask for an accommodation at work, then it is time to disclose. Those who ask for an accommodation at work due to a disability are protected by the Americans with Disabilities Act.