I’ve had severe, chronic incontinence for over a decade. I’m not talking about the kind of leaking that comes when you’re pregnant or laughing or sneezing so hard that you lose it (though those types are certainly uncomfortable and inconvenient as well). In my case, for no reason that doctors and specialists can figure out, following back surgery 12 years ago, my bladder decided to develop a mind of its own. It now subjects me to full-blown deluges of urine before I have a chance to get to a bathroom. One minute I’m fine, the next I feel a sudden and powerful urgency to go, and—whoosh. Standing after sitting for a long time—while I’ve been working at my desk for example—is especially bad; I almost never get there in time.
I know that somewhere between my brain and my bladder there has been a severe breakdown in communication over which I have no control. Medications have no effect, and there are no observable physical issues that can be fixed by surgery or any of the other usual interventions.
The first time I totally lost control of my bladder I was, I admit, completely panicked. I woke up one morning, prior to my back surgery, and my lower back and legs were having such intense spasms that I couldn’t stand up. Then I felt myself lose control and pee all over myself. I was already in tears, and this was the last straw. But it didn’t happen again, so I decided it was only a one-time thing.
Later, however, after my surgery, it returned. For several years, I had progressively greater degrees of leaking, and I wore super extra-long overnight pads all the time; they weren’t perfect, but I got by. I don’t remember when exactly I started wearing incontinence underwear, but it got to the point where the pads couldn’t do the job. The turning point may have been when I was visiting my daughter in New York City; we were in Times Square and had just bought theater tickets for that night. I already find Times Square uncomfortable because it’s too much sensory input, so to then have a mishap and end up peeing and leaking all over myself was too much. I had to get out of there, go home, and change clothes. Embarrassment, frustration, anger—it was a perfect trifecta of incontinence misery. I’ve learned some lessons, though: If the same thing were to happen to me today, I’d have another pair of pants tucked into the bag that also carries my extra underwear.
The ability to have some control over my incontinence means I’m not embarrassed by it, I’m mostly just annoyed. I’ve never felt the need to hide it, but on the other hand, it’s not the kind of thing I announce to the world. It seems to be an unspoken rule that it’s something to be kept strictly secret, like a skeleton in the family closet, probably because of the embarrassment many of its sufferers feel and, equally as devastating, its association with being old. And let’s be honest, smelly. I was never embarrassed to buy undergarments in stores, but recently one of my closer friends said she didn’t know I had incontinence until she read about it in a piece I wrote. She said she thought I would have told her, but it had never occurred to me because it hadn’t naturally come up in conversation!
Although my condition doesn’t embarrass me and I don’t hide it, at the same time, no one likes to walk around with a huge wet stain on her rear end smelling of eau d’urine. The worst things about this condition are that it’s uncomfortable, a nuisance, and, what most people don’t realize, really expensive. I go through a lot of absorbent underwear in a week, and because they’re not considered a medical device or prescription, they’re not covered by Medicare or insurance. Even buying them in as close to bulk as I can, I still pay over $90 a month. For a chronic problem that luckily isn’t painful, this part really hurts.
In the scope of things, I know there are many much worse problems to have. It’s just pee, after all. And I’m lucky to live in a place and time where someone invented disposable feminine “discreet underwear,” without which I couldn’t survive. My incontinence doesn’t keep me tied to my house, which it might if I didn’t have a product that gave me the freedom to go anywhere and do whatever I want without fear of accidents. Learning to live with incontinence isn’t a choice, but deciding how to live with it is. I live with severe incontinence and nobody knows unless I tell them—and that shows just how lucky I am.
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