Anxiety Over Public Restrooms Is Real

Lisa Weber avatar

by Lisa Weber |

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I take immunosuppressants to stop my body from fighting itself and reduce the symptoms of scleroderma. But that also prevents my body from defending against bacteria and viruses.

This makes me think of everything in a new way. After the first few months of taking immunosuppressants, I learned that I’ll catch everything going around and it will last months. Even the common cold can turn into a house guest that overstays its welcome. The last sniffle and cough I contracted lasted nine weeks!

So, imagine me in public restrooms.

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It typically starts with me wondering if it’s possible to pile enough paper on top of the toilet to create a barrier strong enough to protect my immune-compromised bottom. Toilet paper in public restrooms is thin, and there’s never enough time to build a nest thick enough to make me feel safe from the layers of germs I envision on the seat. When I have to go, it’s urgent!

I always end up deciding to squat like a sumo wrestler — close enough to keep my clothes dry, but far enough from the dangers lurking beneath.

The last time I tried this strategy, I realized how weak scleroderma has made me. Trying to squat was excruciating; my leg muscles began shaking and my joints felt like they’d been set on fire. The lower half of my body shook like an earthquake. I kept imagining my legs giving out and me falling backward into the disease-infested seat, bare-bottomed.

Like the scleroderma warrior I am, I wasn’t going to give up. I curled my toes inward and clenched my teeth, bracing myself with every ounce of strength I had left.

Then I realized I had been holding my breath. What was I thinking? I have a lung disease! Withholding even a moment’s breath could have resulted in a hyperventilation episode, in which I breathe rapidly while feeling like I’m suffocating. Passing out would have been the end. The only thing worse than the toilet was the years of buildup on the tile grout.

My anxiety really goes into high gear when the motion sensor flusher knows I’ve moved away! The bowl begins to erupt, and I try to get out of the stall fast, but because the stall door opens inwardly, I can’t leave without moving closer to the very water cyclone I’m trying to get away from! All I can do is close my eyes and pray, “Please don’t let anything wet hit me!”

It used to be so nice, before immunosuppressants, being able to use public restrooms without having germ anxiety.

I wish the healthy population understood challenges like these. Using immunosuppressants means worrying about germs wherever I am. Having to sterilize everything when I’m in public invites snarky looks and rude glares. I want to shout, “Do you think I want to wipe down the table, menus, and condiments in my fancy dress? While celebrating my own birthday?” But instead, I bashfully lower my head and pretend I don’t see them.

I was once on the other end of such naive judgments, and I know it’s simply a matter of being uneducated about chronic illness. I spent 36 glorious years of my life blissfully unaware that disabilities can look very different from one person to the next.

Being chronically ill can certainly make life a bit more challenging. I would like to see everybody show more compassion when they don’t understand what other people are living with. I promise to work on my empathy, too. I’ll also start working on my thigh muscles with some extra squats, because wearing a diaper doesn’t pair well with my skinny jeans.


Note: Scleroderma News 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 other 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 Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.


Susan & John Parlo avatar

Susan & John Parlo

You’re the best! You make me cry and laugh,I may not be on immunosuppressants, but I can sympathize with you.!
Yes, I am better, but for awhile there I was scared. I still am!
You don’t forget!
We love you baby girl! You stay Stronger than Schleroderms!

Kim Curry avatar

Kim Curry

Totally agree! I finally decided to use said toilet paper to carefully wipe the seat as best I can because I can no longer squat due to the polymyositis and weakness in my thigh muscles. If I remember, I try to bring a small spray bottle of disinfect if I know I’m going to be out long enough to use the toilet but that doesn’t always happen. Just know that you are not alone in the struggle. It’s real!!

Margaret KKellgren avatar

Margaret KKellgren

Due to age and weak muscles in my legs I am unable to assume the "squat" position and nothing is more infuriating than not having time to use a disinfecting wipe on the toilet seat and then sitting in someone's urine. I always carry wipes but urgency and numbness in my hands caused by Reynaud's doesn't always permit using one.


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