People with young Parkinson’s often lead double lives. They walk uncomfortably between two worlds - the one that knows they have PD and the one that doesn’t. The decision to reveal your disease to anyone is very personal and far too complex to reduce to a few simple guidelines. The risks and benefits are unique to both situation and person. There are, however, some things to keep in mind as you choose to discuss your PD.
First, where are you in the course of your disease? If you have just received the diagnosis and are struggling to understand what it means to you, it is very likely not a good time to disseminate this information beyond family and trusted friends. This is a moment of exceptional vulnerability and perhaps not the best time to make a decision you will be unable to reverse. Revelation may be better left until you have had some time to understand the disease by seeking more information about it. Telling or not telling can wait until you are ready.
Second, it is important to determine what your goal is. Some people choose to make their PD known because they believe it is healthier to live without secrets. In fact, they consider revelation to be an opportunity for them to find meaning in their condition by educating the public, lobbying, blogging, or raising funds for treatment and research. Although such involvement works for some, it may not necessarily be right for or helpful to you. . Everyone has aspects of their lives that are not necessarily open for public discourse. It is part of our social contract that we respect one another’s privacy. If you are revealing your disease because you believe you have to, then you may do well to hold off until you understand why you feel this imperative. Not everyone needs to pick up the banner of PD activism. Some of us choose to live our lives quietly and privately.
Third, consider the consequences of revelation. I believe your immediate family has both a need and right to know about your PD as soon as possible. There is always risk that revelation to friends may alter your relationships so it is important to take this possibility into consideration. Initially, you might want to consider talking only with people you trust and leave discussion with workout buddies and fellow PTA members until much later. Certainly any revelation to friends at work must also be done cautiously. We would like to think that our fellow employees and employers would not discriminate against us if they know about the PD. The truth is that revelation has the potential to cause missed promotions, less desirable assignments, and closer observation by management. Therefore, it is generally advisable to proceed with caution when it comes to revelation in this particular area.
Finally, the course of PD is such that it will eventually reveal itself. Whereas many people feel self conscious about their disease, attempts to hide it ultimately entail increasing amounts of time and energy. This effort will become overwhelming as the two worlds of PD merge into a single entity. Ultimately, it will be less stressful to reveal your disease.
When, how, and to whom you choose to reveal your PD will always be a tough call. Remember that you do not have to make these decisions immediately or alone. Take your time and discuss these questions with trusted others such as family, people in support groups, and your medical team.