Incontinence Is a Public Health Issue — And We Need to Talk About It
July 11, 2023 4:29 AM Subscribe
Even now, shame and stigma surrounding incontinence has caused severe damage to my self-worth and interpersonal relationships. "I know I’m not the only person who must feel this way. 25 percent of young women and 44 to 57 percent of middle-aged women (“women” is presumably used here to mean “people assigned female at birth”) also experience “some involuntary urine loss,” according to the American College of Obstetricians and Gynecologists journal, Practice Bulletin. And doctors can’t be prepared to offer long-term solutions to incontinence if they’re not even prepared to even talk to their patients about it. 50 to 70 percent of people who experience incontinence don’t seek treatment for it, likely due to the same stigma I’ve experienced for most of my life, which can lead to greater health risks."
"I’ve done everything I can to shorten the amount of time I use the bathroom. But the habits I’ve developed to do so actually jeopardize my health, increasing the risk of potentially life-threatening infections. To change these habits now would require another $50 per month for the extra supplies at minimum — a price increase I cannot afford as someone who does not have access to comprehensive health insurance. If I don’t self-catheterize everyday, I put myself at greater risk for kidney infection, and kidney failure down the road. But I pay for these necessary supplies out of pocket, and they aren’t cheap.
These are important issues we need to talk about. I want to be able to talk about the danger disabled and incontinent people put ourselves in to be seen as normal. I want to be able to talk about my experiences without shame. I want to be able to discuss how people of different ethnicities, socioeconomic positions, and genders are affected by incontinence. I want to be able to talk about the cisnormativity embedded into the designs of incontinence wear without bracing myself for the mockery and derision I’ve come to expect. But I can’t do this until it’s normalized to even talk about incontinence in general."
"I’ve done everything I can to shorten the amount of time I use the bathroom. But the habits I’ve developed to do so actually jeopardize my health, increasing the risk of potentially life-threatening infections. To change these habits now would require another $50 per month for the extra supplies at minimum — a price increase I cannot afford as someone who does not have access to comprehensive health insurance. If I don’t self-catheterize everyday, I put myself at greater risk for kidney infection, and kidney failure down the road. But I pay for these necessary supplies out of pocket, and they aren’t cheap.
These are important issues we need to talk about. I want to be able to talk about the danger disabled and incontinent people put ourselves in to be seen as normal. I want to be able to talk about my experiences without shame. I want to be able to discuss how people of different ethnicities, socioeconomic positions, and genders are affected by incontinence. I want to be able to talk about the cisnormativity embedded into the designs of incontinence wear without bracing myself for the mockery and derision I’ve come to expect. But I can’t do this until it’s normalized to even talk about incontinence in general."
Thanks, Bottlecap. Jumping in now with the public service announcement that Kegels are sadly not a one-size-fits-all solution. Incontinence can have multiple causes, not all of which are weak pelvic floor muscles, and Kegels can worsen the problem for some folks.
Parents, if your child is having to take entire recess periods to handle their bathroom routine, find out what their rights are through an educational lawyer. In my district, recess is non-negotiable. We’d move heaven and earth to make sure a student had time to self-catheterize and play.
posted by corey flood at 5:24 AM on July 11, 2023 [11 favorites]
Parents, if your child is having to take entire recess periods to handle their bathroom routine, find out what their rights are through an educational lawyer. In my district, recess is non-negotiable. We’d move heaven and earth to make sure a student had time to self-catheterize and play.
posted by corey flood at 5:24 AM on July 11, 2023 [11 favorites]
Once you realize how many people are restricted by restroom access, it will make you want to scream. Managing incontinence or ostomy, or just fearing the line at overcrowded, underprovisioned women’s restrooms keeps many people at home and isolated.
I highly recommend Clara Greed’s writing on the topic, especially Inclusive Urban Restrooms, which should be mandatory reading for architects and planners.
posted by Headfullofair at 6:13 AM on July 11, 2023 [9 favorites]
I highly recommend Clara Greed’s writing on the topic, especially Inclusive Urban Restrooms, which should be mandatory reading for architects and planners.
posted by Headfullofair at 6:13 AM on July 11, 2023 [9 favorites]
Mod note: Comment removed for a humor derail. Please treat the subject and post with the seriousness it deserves.
posted by Brandon Blatcher (staff) at 6:18 AM on July 11, 2023 [17 favorites]
posted by Brandon Blatcher (staff) at 6:18 AM on July 11, 2023 [17 favorites]
Incontinence is a nightmare. The physical issues are bad enough—skin irritation and simple fluid/solid maintenance is tough enough. But the attendant anxieties and shame make things so, so much worse, for the individual concerned as well as their loved ones/caregivers.
Our bodies require varying levels of maintenance and waste management is part of being alive. Nobody should have to struggle to address basic needs. I’ve seen situations where discovery of a roomy, accessible bathroom while on the road quite literally saved the day. Although not mad for their food, I am eternally grateful for certain fast food restaurants for this alone.
posted by kinnakeet at 6:36 AM on July 11, 2023 [4 favorites]
Our bodies require varying levels of maintenance and waste management is part of being alive. Nobody should have to struggle to address basic needs. I’ve seen situations where discovery of a roomy, accessible bathroom while on the road quite literally saved the day. Although not mad for their food, I am eternally grateful for certain fast food restaurants for this alone.
posted by kinnakeet at 6:36 AM on July 11, 2023 [4 favorites]
Reading this, I realize I know nothing about self catherization. No one talks about these things.
posted by tiny frying pan at 6:54 AM on July 11, 2023 [6 favorites]
posted by tiny frying pan at 6:54 AM on July 11, 2023 [6 favorites]
Reading this, I realize I know nothing about self catherization. No one talks about these things.
I only know about catheters because my cousin has spina bifida and I used to babysit him. Even at age 6, he'd already learned how to insert his own catheter; I was just there to help him (though I was only about 12 or 13, and I don't know if I would have known what to do). He also faced a great deal of bullying at school; after having fought for years to have him in an integrated classroom, my aunt just quietly gave up and allowed him to be sent to a designated school for children with disabilities so that he wouldn't have to deal with the social fallout of incontinence.
My own issues due pelvic floor issues have been very minor in comparison, but it's still so embarrassing to not know whether you will pee yourself or not when you cough or sneeze.
posted by jb at 7:24 AM on July 11, 2023 [2 favorites]
I only know about catheters because my cousin has spina bifida and I used to babysit him. Even at age 6, he'd already learned how to insert his own catheter; I was just there to help him (though I was only about 12 or 13, and I don't know if I would have known what to do). He also faced a great deal of bullying at school; after having fought for years to have him in an integrated classroom, my aunt just quietly gave up and allowed him to be sent to a designated school for children with disabilities so that he wouldn't have to deal with the social fallout of incontinence.
My own issues due pelvic floor issues have been very minor in comparison, but it's still so embarrassing to not know whether you will pee yourself or not when you cough or sneeze.
posted by jb at 7:24 AM on July 11, 2023 [2 favorites]
I was on a medication for awhile that caused fecal incontinence; by the time I felt the need to poop, it had to happen almost instantly. I never got as good as I should have at carrying spare clothes and cleanup supplies, which I think was maybe a form of denial. The worst experience was a major flow of semi-soft feces as I was on my way through a public building's foyer to a bathroom. I ended up having to clean up as best I could with toilet paper, washing out my pants in the sink in a bathroom where the only sink was in plain view of the door should anybody come in. It gave me a taste, I think, of what it is like to live with IBS. I'm very grateful now to be off that medication, and also to be past a long illness that caused similar problems. Last time I saw my gastroenterologist, I told him gleefully, "My poop is normal! Totally normal!" I pointed at a poster of the Bristol Stool Chart and was like, "I'm a THREE. I'm a THREE!"
He seemed a little nonplussed, but he of all people should have appreciated what I'd been through and how glad I was to be through it. I'd forgotten what it was like to live like I do now: I notice a feeling like I'm probably going to have to poop in awhile. "Hmmm," I think to myself. "Better take a bathroom break when it's convenient." This total lack of panic. It's great.
I know that there are some people who have a really visceral reaction to feces, and so there are always going to be some people for whom the possibility of fecal incontinence is a sexual deal breaker. I hope I'm not one of them. My sexual partners and I are all aging, so who knows what we're going to have to deal with as the years pass? I'm pretty pro-sex and a flexible thinker, and I can already think of a few things that could help that possibility not be such a killer of erotic energy. I'm thinking about things like putting down pads; or multiple layers of sheets and waterproof liners like you sometimes do on the beds of babies and toddlers to make nighttime cleanups easier; keeping not just baby-style wipes but hospital-type body wipes on hand, and showering together, or the non-incontinent partner giving the incontinent partner a bath or shower full of praise and reassurance. It can be humiliating to shit the bed even if it doesn't happen during sex (as I know from experience) and a partner who is matter-of-fact about the situation helps a lot. I hope the author finds someone worthwhile who will make her feel that she is not less-than. I applaud her for bringing this subject into the open to make a conversation possible.
Thanks for the post, Bottlecap.
posted by Well I never at 8:12 AM on July 11, 2023 [19 favorites]
He seemed a little nonplussed, but he of all people should have appreciated what I'd been through and how glad I was to be through it. I'd forgotten what it was like to live like I do now: I notice a feeling like I'm probably going to have to poop in awhile. "Hmmm," I think to myself. "Better take a bathroom break when it's convenient." This total lack of panic. It's great.
I know that there are some people who have a really visceral reaction to feces, and so there are always going to be some people for whom the possibility of fecal incontinence is a sexual deal breaker. I hope I'm not one of them. My sexual partners and I are all aging, so who knows what we're going to have to deal with as the years pass? I'm pretty pro-sex and a flexible thinker, and I can already think of a few things that could help that possibility not be such a killer of erotic energy. I'm thinking about things like putting down pads; or multiple layers of sheets and waterproof liners like you sometimes do on the beds of babies and toddlers to make nighttime cleanups easier; keeping not just baby-style wipes but hospital-type body wipes on hand, and showering together, or the non-incontinent partner giving the incontinent partner a bath or shower full of praise and reassurance. It can be humiliating to shit the bed even if it doesn't happen during sex (as I know from experience) and a partner who is matter-of-fact about the situation helps a lot. I hope the author finds someone worthwhile who will make her feel that she is not less-than. I applaud her for bringing this subject into the open to make a conversation possible.
Thanks for the post, Bottlecap.
posted by Well I never at 8:12 AM on July 11, 2023 [19 favorites]
Yeah, I'm in a similar boat Well I never.
Even though I currently have a colostomy. So at least it's not poop, just weird mucous fluid. Still disturbing, and hard to deal with. I know all the bathroom codes at the grocery stores and the Goodwill around here.
posted by Windopaene at 8:36 AM on July 11, 2023 [5 favorites]
Even though I currently have a colostomy. So at least it's not poop, just weird mucous fluid. Still disturbing, and hard to deal with. I know all the bathroom codes at the grocery stores and the Goodwill around here.
posted by Windopaene at 8:36 AM on July 11, 2023 [5 favorites]
When I was just barely out of high school, an online friend wrote with disdain and disgust for the woman on the bus next to her wearing a diaper. That single moment crystallized so much shame for me that I have significantly curtailed my life so that I would never be that woman on the bus in a diaper. Later that same year, a woman with a stroller stood outside the handicapped stall and berated me (?!) with increasing volume and anger that whatever I needed the stall for didn’t look like it took up as much room as a stroller. Never mind that it was the unicorn handicap stall with a sink actually inside the stall and was not actually labeled “for strollers” but had a handicap sign on it. I just remember being frozen on that toilet while she screamed at me and waiting for her to either stop or leave. Never pausing for me to tell her I would be just a minute she stormed out. “Toileting” is the mealy mouthed way doctors talk about the problem patients like me have. Ugh.
posted by Bottlecap at 9:42 AM on July 11, 2023 [9 favorites]
posted by Bottlecap at 9:42 AM on July 11, 2023 [9 favorites]
A friend mentioned that there's a form of physical therapy for the thing where I pull in to the driveway, my brain says We're home and I wet my pants as I walk in the door. I'd love to find that therapy. I do not want to take drugs for this. I'm fine wearing a pad as needed.
Meanwhile, I read that even mild constipation causes urinary incontinence in people of all ages, and my experience strongly supports this. Eat fiber, vegetables, fruit, drink water. It's good for you, generally and specifically.
I keep a spare pair of panties in my bag, and a pair of jeans in my car because as I age, my body is unpredictable and unreliable. And remind myself that getting old is a privilege denied to many.
posted by Mom at 10:05 AM on July 11, 2023 [10 favorites]
Meanwhile, I read that even mild constipation causes urinary incontinence in people of all ages, and my experience strongly supports this. Eat fiber, vegetables, fruit, drink water. It's good for you, generally and specifically.
I keep a spare pair of panties in my bag, and a pair of jeans in my car because as I age, my body is unpredictable and unreliable. And remind myself that getting old is a privilege denied to many.
posted by Mom at 10:05 AM on July 11, 2023 [10 favorites]
Mom, your friend might have been thinking of pelvic floor PT, which is talked about in the book The Bathroom Key by physical therapist Kathryn Kassai.
posted by corey flood at 10:38 AM on July 11, 2023 [2 favorites]
posted by corey flood at 10:38 AM on July 11, 2023 [2 favorites]
A friend mentioned that there's a form of physical therapy for the thing where I pull in to the driveway, my brain says We're home and I wet my pants as I walk in the door.
I have almost-that (mostly get the urge, mostly do not leak, but sometimes!). I was taking some medication for an unrelated issue and it was wild to see it mostly vanish. Which is to say, I respect your desire to not take medication for that and also think PT for pelvic floor stuff might help, but just to add a note here.
posted by jessamyn at 11:18 AM on July 11, 2023 [4 favorites]
I have almost-that (mostly get the urge, mostly do not leak, but sometimes!). I was taking some medication for an unrelated issue and it was wild to see it mostly vanish. Which is to say, I respect your desire to not take medication for that and also think PT for pelvic floor stuff might help, but just to add a note here.
posted by jessamyn at 11:18 AM on July 11, 2023 [4 favorites]
This lady -- I just want to hug her. That story about a boyfriend who ghosted her? Absolute worst nightmare.
I feel terrible for retail workers who end up having to clean a wrecked bathroom. I know, though, that people without homes are not wrecking those bathrooms for fun. Not long ago, I saw a sweatshirt full of liquid crap in a pile of trash on the street. Sure, it's infuriating to me, but not at the person who had nowhere else to go or to put it. I swear they take away trash cans in this city to discourage the homeless.
posted by Countess Elena at 11:37 AM on July 11, 2023 [6 favorites]
I feel terrible for retail workers who end up having to clean a wrecked bathroom. I know, though, that people without homes are not wrecking those bathrooms for fun. Not long ago, I saw a sweatshirt full of liquid crap in a pile of trash on the street. Sure, it's infuriating to me, but not at the person who had nowhere else to go or to put it. I swear they take away trash cans in this city to discourage the homeless.
posted by Countess Elena at 11:37 AM on July 11, 2023 [6 favorites]
A friend mentioned that there's a form of physical therapy for the thing where I pull in to the driveway, my brain says We're home and I wet my pants as I walk in the door. I'd love to find that therapy. I do not want to take drugs for this. I'm fine wearing a pad as needed.
My other post-menopausal friends and I have talked about this. I'm not having this problem at the moment, but a number of us have hadthis phenomenon, and it was so weird. Like, you knew that if it had taken you five more minutes to get home, you'd have held it and it would have been fine. But, for me, it was as soon as I saw the toilet, my bladder was like, "OK! I can let go now!" I don't know why it improved, just one of those random things maybe?
posted by Well I never at 1:46 PM on July 11, 2023 [3 favorites]
My other post-menopausal friends and I have talked about this. I'm not having this problem at the moment, but a number of us have hadthis phenomenon, and it was so weird. Like, you knew that if it had taken you five more minutes to get home, you'd have held it and it would have been fine. But, for me, it was as soon as I saw the toilet, my bladder was like, "OK! I can let go now!" I don't know why it improved, just one of those random things maybe?
posted by Well I never at 1:46 PM on July 11, 2023 [3 favorites]
I swear they take away trash cans in this city to discourage the homeless.
Because ANYTHING this society can do to devalue the homeless is fair game.
Kegels can worsen the problem for some folks.
After my stroke, my awesome PT people insisted that I be evaluated even though I didn't have any incontinence issues. They were most insistent that if I ever developed any issues at a later date, that I would NOT do Kegels without additional evaluation--not because of the stroke but because I was a mom. Apparently, women who have given birth can cause damage doing Kegels that can cause eventual incontinence. Women need to thank asshole doctors, who tell them that the first exercise to do after birth should be Kegels. Then they suggest women can start to damage their backs by doing sit-ups. It's like the whole medical profession is out to get half the human race.
posted by BlueHorse at 3:37 PM on July 11, 2023 [3 favorites]
Because ANYTHING this society can do to devalue the homeless is fair game.
Kegels can worsen the problem for some folks.
After my stroke, my awesome PT people insisted that I be evaluated even though I didn't have any incontinence issues. They were most insistent that if I ever developed any issues at a later date, that I would NOT do Kegels without additional evaluation--not because of the stroke but because I was a mom. Apparently, women who have given birth can cause damage doing Kegels that can cause eventual incontinence. Women need to thank asshole doctors, who tell them that the first exercise to do after birth should be Kegels. Then they suggest women can start to damage their backs by doing sit-ups. It's like the whole medical profession is out to get half the human race.
posted by BlueHorse at 3:37 PM on July 11, 2023 [3 favorites]
Welcome to America...
posted by Windopaene at 3:50 PM on July 11, 2023
posted by Windopaene at 3:50 PM on July 11, 2023
I have a mild incontinence issue that ebbs and flows with stress. After screwing up the courage to talk to my doctor about it, I was sent to a urologist. I sat in a waiting room for over 2 hours with a dozen men over 70. (I was in my early 40s.) The urologist saw me, rolled his eyes, and told me to shake better.
I had never felt so ignored and unseen in my life.
posted by gwydapllew at 4:15 PM on July 11, 2023 [13 favorites]
I had never felt so ignored and unseen in my life.
posted by gwydapllew at 4:15 PM on July 11, 2023 [13 favorites]
gwydapllew sat in a waiting room for over 2 hours with a dozen men over 70
Nearly there, me. My FiL is approaching his centenary and quietly collapsing in mind and body. Hereabouts, The State delivers colour-coded incontinence kit every month. The boxes of adult diapers come in and go out considerably heavier to trash / land-fill. (Out of respect to him, no-one calls them diapers/nappies in his gaff - "pads" is preferred). We try to keep the old chap properly hydrated but therefore it's a dice throw whether he'll get through the [for him, long] night without requiring clean 'jamas, sheets. With great good fortune and excellent carers, his skin is holding up and we are side-stepping the idea of catheters for now. Three months ago the wheelie-bin disappeared: the most likely explanation was that the over-laden bin broke from its moorings and was eaten entire by the trash-truck. We have to get our laughs where we can - bleakly.
posted by BobTheScientist at 2:03 AM on July 12, 2023 [4 favorites]
Nearly there, me. My FiL is approaching his centenary and quietly collapsing in mind and body. Hereabouts, The State delivers colour-coded incontinence kit every month. The boxes of adult diapers come in and go out considerably heavier to trash / land-fill. (Out of respect to him, no-one calls them diapers/nappies in his gaff - "pads" is preferred). We try to keep the old chap properly hydrated but therefore it's a dice throw whether he'll get through the [for him, long] night without requiring clean 'jamas, sheets. With great good fortune and excellent carers, his skin is holding up and we are side-stepping the idea of catheters for now. Three months ago the wheelie-bin disappeared: the most likely explanation was that the over-laden bin broke from its moorings and was eaten entire by the trash-truck. We have to get our laughs where we can - bleakly.
posted by BobTheScientist at 2:03 AM on July 12, 2023 [4 favorites]
Just wanted to note the good work they different companies are doing to provide different underwear options. Thinx was unfortunately found to work with PFAS in a lot of their line, but Modibodi seems not to do that. (I use their period underwear but have noticed their increasing product lines, including urinary and now pregnancy. Sending along in case anyone else wants cute options.)
posted by ec2y at 7:07 PM on July 12, 2023 [2 favorites]
posted by ec2y at 7:07 PM on July 12, 2023 [2 favorites]
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A relative post-cancer needed to access bathrooms very often and their daily activity was reduced to ‘safe’ routes with no way to travel. The idea of diapers was so shameful it couldn’t be borne and their world sharply reduced in scope. I hadn’t even considered the impact on sex - that nurse’s awful advice!
posted by dorothyisunderwood at 5:23 AM on July 11, 2023 [7 favorites]