But you look good – A Parkinson’s Pet Peeve
Steve Walsh 9/27/19
If you’ve been a PWP (Person with Parkinson’s) for any length of time you most likely have heard something like this –“Sorry to hear you have Parkinson’s, but hey, you look good”. The first time you hear it you’re taken aback. You wonder what they were expecting you to look like. As you continue to hear it you may think to yourself “If you only knew how I feel inside” or “If you only knew what I had to do to get to this point”. As you hopefully continue to hear people tell you that you look good your reaction continues to evolve – at least it has for me. Here’s the stages I’ve gone through with “You look good..
Stage One – Perplexed. This is the “what did you expect me to look like?” stage. For many of us this likely occurred shortly after our diagnosis. We may still be struggling with the fact that we have Parkinson’s. As such this seemingly innocent phrase may be irritating the still open wound of our diagnosis. While our response may be a simple “Thank you”, inside we are likely frustrated and perhaps even angry.
Stage Two – “You don’t understand.” This is the phase where we want so desperately for people to understand what we are going through. While it is natural to have this desire to be understood, we recognize that unless you are a PWP or Care Partner, you will never fully understand what being a PWP feels like. BTW – this is not unique to Parkinson’s. The same can be said for cancer patients, stroke survivors, heart attack survivors, etc. That being said, if a friend, family member or acquaintance is interested, take a few minutes to explain the difference between ON and OFF times. Share the well known “Parkinson’s Iceberg” graphic. Personally, I have found that people want to understand the disease and its impact on us. They want to understand as much as we want to be understood.
Stage Three – Realization. This is the stage where we realize that we have likely told someone else “but you look good.” It may have been a family member who is undergoing chemo or somebody at church who was in a car accident. We both know they may look better but are still hurting inside. That’s when we realize that “but you look good “ is not about your physical appearance. Quite often we just don’t have any better words to say. When I hear phrase now I accept it as recognition and encouragement of my efforts to fight the disease.
In conclusion, I hope to hear “but you look good” for a long time. Oh sure, there will be times when I’m having a bad day where I’ll revert to stage 1 or 2. Hopefully these times will be few and far between. Most of the time my response will be a simple “Thank you. I’ve been working hard at it.”