Dealing with scrutiny when symptoms of Parkinson’s are invisible
I don't need to justify my needs, but it's hard not to feel judged in public
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I know I say it all the time, but Parkinson’s disease is just weird. It can affect you in strange ways you never imagined, like when you’re out in a crowd.
When I was diagnosed, the only Parkinson’s disease symptoms I knew of were the visible ones. These motor symptoms included the tremor that is most often associated with Parkinson’s patients. Also noticeable were how slowly I moved, my gait issues, and frequent episodes of show-stopping rigidity.
What I didn’t know about were the invisible symptoms that would sneak their way into my life over time. These non-motor symptoms include digestive and gastrointestinal issues, heat sensitivity, mood issues, and, of course, the crushing exhaustion of trying to keep this gaggle of changes under control.
Not only is this a lot to deal with on a personal level, but when you go out into the world, it can be equally difficult for friends and strangers to deal with. When someone has a cast on their leg or a missing limb, it is easier to understand why they might need assistance and how you might help. Which is not to say everyone needs help. But if you see a person with a broken leg in a wheelchair while traveling, your brain goes, “OK, I get it.”
But when you’re experiencing invisible symptoms and need help, it’s hard not to feel judged. I’m sure people have seen me arrive at an airport gate in a wheelchair and then walk down a jetway, and wondered why. I sometimes feel like I should make an announcement. Something along the lines of, “Fellow passengers, I have Parkinson’s disease. You can’t always see it, but I have symptoms all the time, and while I can walk short distances, traipsing through an airport could wipe me out. And just because I’m not visibly shaking doesn’t mean I don’t really have Parkinson’s.”
My wish for more patience and understanding
Now, it’s no one’s business what is “wrong” with me, and as long as I’m respectful of others, I don’t need to justify my needs. And I do try to avoid using wheelchairs, disabled parking, and other “bonuses” of having this disease when I don’t need them. But I assure you, the anxiety of using this “excuse” for help is enough to make me want to run away (if I could run!).
This scrutiny is part of why social anxiety and the desire not to try new things are such an issue for Parkinson’s patients. You feel bad when people have to slow down to accommodate your visible symptoms, and you feel bad when your invisible symptoms make you feel like a jerk for taking advantage of help.
I grew up learning not to worry about what other people think. It was a valuable lesson from my mom to never stop marching to my own drummer. But she didn’t know my drummer would eventually be Parkinson’s disease. I move to its whims now, and that looks and feels different every day.
So this holiday season, I wish for patience, for myself and others. I also wish for healing and joy for all of you. And while I’m wishing for things, here’s a big wish for moving closer to a cure for Parkinson’s in 2026!
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.
William Miller
I identified with many of the feelings expressed about being in a crowd with hidden symptoms. When traveling I now wear a sunflower lanyard to let airport and airline personnel know I have some limitations. It helps.
julie Lawyer
this article should have wider coverage such as in a national newspaper like New York Times or Washington Post
and other conditions like MS might also have symptoms that might not be understood by someone who has no knowledge of the symptoms
John Citron
Non-PWP people do not understand and never will no matter how much we try to explain to them what we're dealing with! At the beginning of this year, I attended a celebration of life for my father and sister. Among the people that attended was a long-time client of my father's and brother's. I've known this man for about 45 years myself and saw his family grow up and met his grandchildren and so on. The conversation was as light and polite as usual then his eyes narrowed as he asked me how I was doing, health wise.
I told him that I'm coasting along for now, which is a good thing, and at the moment my symptoms are all over the place. It doesn't help that I also have an autoimmune disorder which is adding to my misery, but I try to stay positive and keep busy. He pressed and told me that I didn't look like "I was sick" and then he asked me how old I was. I told him 64 going on 65. He shook his head and said I should be working. I told him I can't because I fall and he smirked and shook his head. I told him again that it wasn't my choice. I fell at work, and the company assisted me with receiving disability benefits. To sum it up, I can't set foot in a company for work because I am an insurance risk.
In the end, he said it's people like me that shouldn't be receiving disability benefits because we're not disabled and are stealing money from the government. Not to sound political, but this is typical Republican mantra. After my stomach settled down and he had gotten up to leave, I thought to myself. No one goes through life untouched. He may have plenty of money and is living high on the hog right now, but all it takes is one "fake illness" to take it all away from him. Nothing is forever, both good and bad. My nanna was right.
Pamela Mathison
My husband's tremors are almost 100% controlled through his DBS. What is not apparent is his slowness, his anxiety and especially his PD-related cognitive decline. When we travel, he wears the Hidden Disabilities landyard. More and more airport staff around the world are familiar with the Hidden Disabiities and without asking, we've been routed to special lines going through customs, had no questions asked when we requested pre-boarding etc. We don't care what others may think - just that my husband gets the opportunity to not feel rushed in the boarding process. And the back of the information card has his name, information about his deficits/needs, and my name and phone number. It's great peace of mind for me in case he gets separated from me. This program has been a great help to us.
Stephen Jackson
Well said Mollie.
Maurizio Masarati
Io non mi faccio questi problemi, uso i parcheggi disabili anche se cammino ma mi appoggio a un visibilissimo bastone. Ho stampato sulle giacche e sulle Polo la scritta a caratteri grandi "NON SONO UBRIACO HO IL PARKINSON"
È MOLTO MEGLIO CHIARIRE SUBITO.
CORAGGIO!
David Blacker
The Sunflower hidden disabilities lanyard is an excellent way to assist with this exact problem.
I’ve used it with great effect in sone domestic flights within Australia recently