I am living my life with Parkinson’s with as much enthusiasm, optimism and energy that I can muster.
In the past week, I’ve become more aware of how frequently the word “suffer” (and its derivatives) is used in connection with persons with Parkinson’s. For example, the title of a story inThe Washington Examiner is Cody Outfitter Helps Parkinson’s Sufferers Go Hunt. In another story, Dance Helps Parkinson’s Patients Harness Therapeutic Power of Movement, the transcript from PBS labels persons with Parkinson’s as “Sufferer, Parkinson’s Disease.” This PBS story focuses on dance, movement, soaring, joy, happiness and bliss -- all words that in my mind are directly opposed to "sufferer."
While I appreciated the contents of both stories, I found the “sufferer” label detracted from them. I think the writers of these stories are NOT deliberately trying to be mean-spirited or insensitive to those with Parkinson’s. They are more likely to be well-intentioned, empathetic and sensitive, but simply unaware of the impact of their words on people with Parkinson’s and their families and friends.
I personally find the word “suffer” and its derivatives, when used to describe people with Parkinson’s, as insulting, condescending and paternalistic. I don’t consider myself a sufferer, a victim or an afflicted person. There are certainly times when I feel sorry for myself but generally I am positive, upbeat and hopeful.
So what’s a person with Parkinson’s to do?
- Be aware of the power of language which impacts your behavior, feelings and attitude. If you see yourself as a Parkinson’s sufferer, you will be. If you view yourself as an empowered person living with Parkinson’s, your behavior will follow.
- If you find certain words used by the media or by others to be offensive, let them know. For example, when I contacted Dr. Larry Hoffheimer, Chairman of the Parkinson Research Foundation, about the use of the words “Parkinson’s sufferers” in a description of an upcoming event, he responded immediately, agreed with me, corrected the wording, and banned the use of the word by their organization.
- Let others know which words are preferable to you as a person with Parkinson’s.
- Remember that your identity is far greater than that of a Parkinson’s patient. I am a person living with Parkinson’s who is also a wife, blogger, writer, counselor, volunteer, dog-lover, daughter, sister, aunt, cousin, niece, friend, dancer, musician and much more.
Beyond being a person with Parkinson’s, who are you?
Check out the insightful comments about this topic from Bob Kuhn, Diane Cook, Betsy Vierck, Neil Sligar and Dirty Butter at: