“But You Don’t Look Sick?”

Occasionally I am surprised when I meet someone new and explain that I have Parkinson’s disease and they will say, “But you don’t look sick?”. I never really know how to respond. I mean that statement can be applied to a variety of chronic diseases and often can be misinterpreted as uncaring or insensitive or perhaps complimentary depending on your point of view. I consider it an opportunity to educate and create awareness about PD. I don’t intend to over-analyze the psychology of social communication here but intend to offer advice and just a few tips on how to turn a misconception into a positive conversation. There are so many misconceptions but I will keep this article to the most common ones that I’ve received.

Misconceptions

Misconception #1: “You can’t have Parkinson’s disease because you’re so young.”

Parkinson’s disease is typically associated with older adults (60 and older). There is about 10% of those diagnosed with “early onset Parkinson’s disease” that fall into the 21 to 50 years of age range.

Misconception #2: “You don’t shake or tremor like some people with Parkinson’s disease.”

There are many symptoms of Parkinson’s disease. Tremors are just one of many physical manifestations including gait, balance, slumped posture and more. In fact, PD, in my opinion is a very complex group set of syndromes that affect everyone diagnosed differently. PD not only affects our bodies, it causes sometimes several autonomic dysfunctions such as: gastrointestinal (GI), urogenital, cardiovascular and thermoregulatory symptoms. Then there are the disruption of executive functions in our brains as the disease progresses such as: depression, apathy, anxiety and impulse issues.

Misconception #3: “Can you die from Parkinson’s disease?”

Let me be clear. People don’t die “from Parkinson’s disease nor is it contagious.” Hugs are still effective and necessary! As previously mentioned, there are a number of related syndromes that may be associated with having PD and remember, not everyone diagnosed will experience the same effects. My wife, Gretchen, also a contributor and has been diagnosed with PD says, “If you’ve seen one case of Parkinson’s, you’ve seen one case of Parkinson’s.” Our doctors love that one. Living with Parkinson’s is not easy. We take each day as it comes and our frustration sometimes sets in because of all the misconceptions about PD. The following is a short list of tips we use to open up opportunities to engage with people to educate and create critical awareness about Parkinson’s. Please add your own tips on how you deal with the stereotypical opinion about PD or how you educate those around you. There are no wrong answers.

Tips and advice

• Your number one message and if you take anything away from this article it is this: “You are not your disease!” PD may have an adverse effect on your life as it was. It may make you slower, more cautious, require assistance. Learn to accept help and appreciate those that offer.
• Rely on your doctors but also educate yourself about PD and ask questions! If something is bothersome, mention it when you are in front of them. Share your concerns, questions and make sure you get answers.
• Don’t be afraid to share your experiences with others especially your family, friends and care partners. It is important to interact with others on how you are feeling. Sometimes my own family forgets that I have PD because I “don’t look like I have PD.” Thanks to my excellent team of doctors and nurses. I can’t imagine living life without them.
• Okay one more and as I’ve stated, feel free to share and add to this list because it is by no means complete and your opinion could help others dealing with similar problems. Resist the feeling to withdraw socially. Depression and apathy are two significant symptoms of PD and cutting off contact with others only makes the situation worse. Ask a trusted friend or care partner to hold you accountable.

Conclusion

Living with Parkinson’s disease is not easy and there will be some rough days ahead but remember this. You are in charge and you pick your support team but remain flexible and allow for assistance when you need it. Choose your medical professionals wisely. They should be patient and caring and most importantly listen to your concerns. It is possible to live a long, successful life with PD. If you manage it responsibly, you become empowered and inspire others. One final thought, when people say, “But you don’t look sick” say thank you and use that opportunity to educate.