Let people know about your disease to relieve stress of hiding symptoms

Submitted by: bbell 5/11/2011 2:01:35 PM

I have been an avid reader of your weekly posts and I don't believe
I've seen anything on one major means of stress management that I have
used to good effect.

When I learned I had Parkinson's, it was 9 1/2 years ago and I was 47
years old. Admittedly, I was flipping out, at first thinking in
terms of my demise. My movements were halting and I had difficulty
writing a check in front of a stranger. Guess what? The more I
fretted, the more difficulty I had doing anything smoothly in public.
I would become nervous as a cat when I needed to perform any simple
task at the grocery store, in a buffet line or other places where
people might have wondered what my problem was. My nervousness would
cause my symptoms to worsen. Then, there were the times when I would
think that I was doing just fine, and a cashier would ask me if I
required some help carrying my things to the car.

I'm a pretty direct and impatient person. I decided that the best way
to deal with my anxiety was to just say that I had Parkinson's. Most
people have some idea what that means, but even for those who didn't
have any knowledge about PD, it changed everything about how they
perceived me and any awkwardness I was having at the time. I found
they asked questions and that gave me an opportunity to educate them
and my anxiety was immediately reduced...because, for them, the
mystery was solved. Sometimes, others will say that they are sorry
(for me having the disease) and I will give them a shocked look and
say, "YOU didn't have anything to do about it, did you???" and then I
will give them a big grin so they will realize I'm trying to help them
relax and not feel uncomfortable.

Letting people know about our disease allows us to be more at ease in
our own skin. I'm sure that some people are worried about the effect
it will have on their work situation, etc., but I also know that more
often than not, it is clear to others that something is wrong. We are
fooling ourselves if we think it doesn't show. Ours is a difficult
disease to hide and even if we think we are managing well,it causes
us to experience so much more stress when we are afraid for our
friends, family and coworkers to know. I have never had someone
behave badly towards me after they learn the reason for my difficulty,
but I know of other PWP who have had irritated service people be rude
to them because of their slowness, yet they are unwilling to explain
the problem because of embarrassment or frustration. These moments can
only serve to cause anxiety which manifests in a greater display of
our symptoms.

Submitted by Vivian, person living with Parkinson's

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