Dealing with scrutiny when symptoms of Parkinson’s are invisible

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.

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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.