Just Say No to Suffering

"Pain is inevitable. Suffering is optional." Source: Unknown 

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?

1. 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.
2. 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.
3. Let others know which words are preferable to you as a person with Parkinson’s.
4. 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:

http://katekelsall.typepad.com/my_weblog/2010/12/just-say-no-to-suffering.html#comments

 

 

 

Comments

[Bob Kuhn]

Kate;

Great Post!!!!

I agree wholeheartedly. Suffering may be a sometimes state of being, but we cannot allow others to identify us with that label. Next thing we know and they will be reverting to "handicapped". The difficulty is finding other language that is better. I like "people with Parkinson's" or "challenged". What about you? Others?

Your friend,

Bob

[Kate Kelsall]

Thanks, Bob, I appreciate your feedback.

It's important to monitor others' languague as well as our own self-talk about Parkinson's.

I like:
Person/People...
With Parkinson's,
Challenged by Parkinson's
Living with Parkinson's
Affected by Parkinson's
Managing Parkinson's

I DON'T like:
Person/People...
Suffering with
Parkie
Victim
Afflicted by
Handicapped by

Your blogger friend,
Kate

[Betsy]

Oh Kate,

Thanks so much for writing about this. As usual you're in the lead on what PWP should be doing. In this case, objecting to pessimistic, negative images of us. And your suggestion to take action is right on: write the newspapers and call up the speakers when we are catgorized as sufferers.

I would like to add that we should never act like sufferers.

Another word I would like to add to the X-list is victim!

AS always thanks for your thought provoking post!

Betsy

[Kate Kelsall]

Hi Betsy,

Thanks for commenting. I added "victim" to the X-list. See earlier comment.

Related to this topic is the stereotyping of PD patients. Perhaps we could write a post about this after the new year.

Kate

[Betsy]

Yes, it's a go!

[Diane Cook]

Kate,

I think the power of your model of being positive, upbeat and hopeful in the midst of a chronic, progressive disease serves not only as inspiration but also as education to those who may without thought use the word "suffer" (or closely related words). So I agree that we must take action to correct the labels, but perhaps the most powerful force of all is in the demonstration that you are not a "sufferer" but rather take the opportunity of your disease to make valuable contributions to help others.

Diane

[Dirty Butter]

I agree that words have power, if we allow people to use them as standard messages about any person with a disabling disease. But I tend to be non confrontational. Well meaning people have said things to and about me that I wish I had had the nerve to confront them about. So I needed this post.

I stopped by to wish you and your family a very Merry Christmas!

Want more blog traffic? Check out ExposeYourBlog.

[Kate Kelsall]

Hi Diane,

Thanks for reminding me that actions speak louder than words and that I lead my life not as a sufferer, but as a positive, upbeat and hopeful person managing my PD.

Kate

[Kate Kelsall]

Hi Dirty Butter,

I appreciate your comments.

I too have difficulty confronting and expressing my position through the spoken word. I find it easier through the written word. Also, my mission is to increase awareness about neurological issues in all of the community. Knowing that I speak for many people, not just myself, also makes it easier.

Merry Christmas to you and your family,

Kate Kelsall

[Neil Sligar]

I share a disdain for the term “sufferer.” (Note that “sufferer” has been added to the PBS transcript. It wasn’t in the words actually spoken.) It’s annoying when outsiders depict me as a victim. As troublesome as the condition may be, PD has opened a door to new friends and opportunities to be of service.
A descriptor I particularly dislike is “patient.” I’d agree with the term if in hospital or in a doctor’s room, but not when going about my day-to-day activities. It implies reliance and unless I’m seeking assistance, I’m not being reliant. Maybe I’m too sensitive but I sometimes feel that people not experiencing PD feel entitled to speak on my behalf.
If I were to join an exercise group specifically organized by physiotherapists for people with Parkinson’s, I’d be called a “patient.” Exercises would be chosen by a physiotherapist with emphasis being placed on safety for someone with PD. My choice is the gym, exercising with everyone else. Fitness instructors are happy to offer advice, if I seek it. My PD isn’t an issue. Parkinson’s is no-one’s concern other than mine. My gym tag is “member.”

Neil Sligar
Sydney, Australia