The frustration of feeling misunderstood due to Parkinson’s
A little patience and kindness can go a long way
Do you ever feel like screaming? On the inside, I scream fairly often. Usually, the theme is “You don’t understand!” and it’s in conjunction with some incident where it’s very clear that 1) the person doesn’t know me at all, and 2) all they can see is a shaky, slow, and unsteady woman in her 60s.
It’s been 10 years since my diagnosis, but I recently realized that one of the unexpected consequences of having Parkinson’s disease is the frustration of being treated like somebody I’m not, especially when my meds aren’t kicking in. The feeling of being misunderstood is hard to put into words.
This fall, at one of our local farmers markets, I was attempting to buy parsley. Now, I’m not just any shopper; I’m a trained chef, my husband is a retired farmer, and I used to run our downtown farmers market. So what I’m saying here is that I know what parsley looks like. I didn’t see any on display, so I asked.
Of course, this was the Friday before our Canadian Thanksgiving, so the market was busy and there were lines to buy everything. Some people were getting impatient, especially with this old lady (that would be me) slowing everything down.
Anyway, the farmer — whom I knew because I was a frequent shopper at their stall — brought out some parsley.
Something else you need to know about me is that I am a people pleaser. I hate disappointing people or hurting their feelings, so I often find myself in situations where I’m trying to avoid conflict at all costs.
This farmer held out the bunch of parsley. It was dried out and sunburned, and didn’t even resemble fresh parsley. But instead of saying, “No, thanks,” for some reason I said, “Is that parsley?” It seemed to me that it was a less hurtful way to say “no,” and I definitely didn’t want to buy it.
The person behind me in line, who was getting quite impatient by this point, said, “It’s flat-leaf parsley, you just don’t recognize it.”
My inner voice went ballistic, and so did my tremor. It was hard for me to speak, but I managed to whisper, “I know what flat-leaf parsley looks like.”
This woman repeated, in a louder voice for the people in the back, “It’s flat-leaf parsley, you just don’t recognize it.” And then she pushed past me.
And that, friends, is how I was bullied into buying parsley that I didn’t want — another thing I can blame on Parkinson’s. The incident left me feeling frustrated and misunderstood, a common occurrence for many of us with the disease. So, heading into this season of hustle, bustle, and general chaos, please keep in mind that sometimes things aren’t always as they seem. A little patience and understanding can go a long way.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Melissa Mosley
Thank you for your outstanding article. I'm forwarding it to everyone in my family, especially my husband. He gets so frustrated with me because I am definitely different than I use to be with my outside personality. I truly am the same person I was before PD. A big part of his frustration is fear of the PD. I know because my parents both had PD! It helps me understand the whole families' reactions to me, still hurts.
Thank you again! Take care.
Christine Scheer
Hi Melissa,
I hear you! It's so frustrating!
All I can say is - hang in there. In reality I guess we have to be patient with not only others, but ourselves as well. We've got this.
Thanks for your comment!
Christine
Jan
I hate it when people equate physical problems with cognitive ones. I was with my daughter. asking a question having to do with me. and they only addressed her, as if I was not there.
Christine Scheer
Hi Jan,
Ugh! I hate that. Maybe talk to your daughter about it, so it doesn't happen again.
Thanks for reading!
Christine
Doug MaGee
Ms. Scheer, My goodness, I had to reply to this! Like you, I am a people pleaser. I have been diagnosed with Parkinson’s Disease for about 9 years. I can’t begin to tell you how may times I have been misunderstood, due to Parkinson’s Disease! It is very frustrating! For me, I was seeing a movement disorders specialist neurologist, whose specialty is Parkinson’s Disease, for the first time! I had been seeing a General Neurologist, D.O., but he retired, so this was my first visit, with this M.D., and I was uptight and anxious! Well, first of all, it was an 8;00 am appointment, and, lets just say that I am not a morning person, and it was taking a long time for my Sinemet pills to kick in! So, I was nervous. I sat in the waiting room til 8:20, when the nurse took me back yo the exam room. It was nearly 9:00am, before the Doctor came into the exam room, Bu that time, my rolling pin tremor, in my left hand, was quite evident, so I felt embarrassed! The Doctor gave no apology for being late, or keeping me waiting. He was somewhat abrupt, asking me if I had a problem. I said that I have trouble walking, ar times! He frowned, and ssid, “Where is your cane? If you have trouble walking then a Dr. would have issued a cane for you to use!” I was flabbergasted, and could hardly speak up. Finally, I said, “Well, my orthopedic Doc did order one for me, and I use it, when I need it. Today, I didn’t feel that I needed to bring it!” Then he said, put your hands out, and arms, and hold them out, while getting up from your chair, without assistance. The seat of that particular chair was low, so I couldn’t muster enough power in my legs ( because of arthritic knees ), to get up, so he frowned again! He gave me a very brief, one minute cursory exam, closed his tablet, saying we’ll keep you on the same dosage you have now! Then he opened the door. pointed toward checkout, and gave me a gentle push on my back, toward the checkout station! Then he abruptly went in his office, without saying another word! So, believe me, I sure felt misunderstood! Later, at home, I read his clinical notes! Yes, I was misunderstood! Definitely, I was not given the opportunity to express my ongoing concerns, about my Parkinson’s problems ( like falling. losing my balance ). I read where he assigned me to see a Nurse Practitioner, for my next visit, to that office! So, I’m considering going elsewhere! Here in the US, it’s somewhat different, than in Canada, because we pay high premiums for our health care, even though we have a retiree program, called Medicare! So, I sure can relate to your feeling frustrated, when hou have been misunderstood!
Christine Scheer
Hi Doug,
Wow, that's a lot! You deserve better than that! I had two neurologists before I settled on my current one (who I adore). It took a while to find a fit, but as one of my friends said - this is the rest of your life, not just a one-off appointment. Get the doctor you want!
Take care,
Christine