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Voices Of Incontinence Personal Story: With Incontinence, Your Imagination Is Your Own Worst Enemy.

This story is a part of the National Association For Continence’s “Voices Of Incontinence” campaign, which shows, in patient’s own words, what it’s like to live with incontinence. Learn more about this campaign, watch the videos, read other stories, and find resources to manage bladder leaks here.

Having incontinence is as much a psychological issue as it is an emotional issue.  I’ve struggled with bladder leaks for years, and I’ve found it extremely isolating. That’s not because it has to be – the leaks aren’t actually all that big of a deal – but because I find it hard to stay out of my own head.  With incontinence, your imagination is your real enemy.

My leaks started when I was on the younger side – when I was in my mid 40s. I started having them at the gym – when I did jumping jacks, ran for longer than a couple of miles or did squats. It was embarrassing to say the least, and I started dreading group workouts for fear I would have a leak and everyone would know.

Isolation was a gradual process. At first, I stopped the workout classes and started just doing things on my own at home to prevent any potential embarrassment.  When my leaks started getting more frequent and heavier, I avoiding after-work functions.  I limited my social interactions to just my close family and friends, and even then I distanced myself.

I was so terrified that someone would find out. Of course I was nervous to have a leak – that would be mortifying – but I was just as nervous for them to see the bulk of the absorbent pads under my clothes. What if my co-workers guessed what was happening? What would they say?

Even the idea that someone would see me buying absorbent products at the store was horrifying, so I found a place to order them online (which actually turned out to be very convenient).

Over time, my anxiety just got worse. I found a job working from home and only went out as needed. I had things delivered and made friends and family come to me if they wanted to see me, which, as time went on, became less and less.

At this point, incontinence has taken a complete hold on my life, the end result of a long, slow slide into isolation, all driven by my fear of being “found out.”

I know I’m partly to blame. I read other people’s stories of overcoming – learning to accept their condition, finding ways of managing it better, getting new treatments – but all that seems impossible for me.

The life I live is probably unfathomable to most people, but I do hope that I’ll eventually get over this. My dream is that one day I’ll be able to find better treatment options, or that I’ll be able to go out in public without the fear of a leak or an accident lurking around me all the time. I want desperately to socialize with friends. To be normal again. But I just don’t really know how.

My one saving grace has been the NAFC message boards. I’ve connected with so many great people. I’ve shared my fears with them about my condition, gotten great tips for managing things better and opened up about my hopes of being normal again someday. It’s been comforting hearing their stories, too, and knowing that I’m not alone.  I wish they could be my friends in the real world, but I think that for most of us, the anonymity of being behind a screen is actually a positive thing.

I hope my story can be a bit of a cautionary tale for those out there who are starting to experience bladder leaks. Incontinence can be so much more than the physical symptoms – it can affect your emotional well being, too – to the point that it can even cut you off from a life surrounded by others.

Marion C.
Springfield, IL

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