Sunday, February 7, 2010

I Am Not Suffering With Nor Afflicted by Parkinson's

Written in squiggly letters, Vern Turner scribbled the following just before Christmas 2009:

"About 19 years ago I got up in this group and said "Please pray for me." I have Parkinson's disease. I am not suffering from Parkinson's Disease, I just have Parkinson's disease. I am not afflicted with Parkinson's disease. You live long enough and you get something. I got Parkinson's disease. I could have gotten something else but I got Parkinson's disease."
Language communicates more than simple meaning. The words we choose and use to describe ourselves, our diseases, and others also project our attitudes and beliefs. Certain words evoke certain reactions.
Take the word “should”. “You should try my neurologist.” It is difficult to use the word without communicating judgment, even if unintentional. It is directive, a command. It implies that the speaker knows what is best for the hearer. Even if true, it can leave an arrogant or even paternalistic aftertaste. I learned what danger lurks behind that simple word in discussions with my adult children. I noticed they respond less than eagerly when my “suggestion” was phrased with the word “should”. Sometimes there was a noticeable wince when that word was used. Sometimes there was serious push back. You see the word has an invasive potential tone. What can you say in response when someone says you should do something? You have two choices. You can comply or disagree. There is limited opening for discussion. Changing language takes away the value judgment that has the effect of putting the hearer in a corner. How different it sounds to say, “If you need a second opinion you might want to try my neurologist”. I decided some time ago to avoid the word “should” wherever it might be misunderstood. Even in my professional life, I prefer, “I recommend…” It leaves one feeling humbler when you avoid “should”, and communicates greater humility as well.

In a similar way, consider the words we, and others, use to describe Parkinson’s disease. Whether used by me or about me, I can accept the neutral statement, “I have Parkinson’s”. Even though I am years behind his PD progression, I agree with Vern Turner. Using words like ‘suffering” or “afflicted” or even "coping with" communicates something different than what I want to be said by or about me. I am not a victim, survivor, martyr or particularly brave about my lot. And while I do want to have courage and be as positive as possible, I wish to leave vocabulary describing the more pitiable state to those who truly are suffering and afflicted. Yes, PD does bring unpleasant and sometimes painful symptoms. There are uncontrollable and debilitating consequences triggered by the disease and medications that treat it. Still, I speak for at least some people with Parkinson’s when I opt for referring to being “challenged” with PD. It frames the path I walk with others in positive but realistic terms.

I am learning to choose my words carefully, especially when describing something I need to wrestle with daily.


  1. Nice post, something I struggle with too. As Parkinson's becomes something that can be managed more effectively over time, (I hope and believe it will) it will be interesting to see how the vocabulary we choose for it will change.

    Festinate forward!


  2. Peter;

    Language betrays our thoughts and if we are to keep hope in the forefront we will find our language (and that of others) either supports or diminishes that hope.
    Thanks for your positive attitude.