Incontinence and Shame

“At the height of laughter, the universe is flung into a kaleidoscope of new possibilities.” – Jean Houston

Incontinence and Shame, Submitted by – Lianna

Introduction

I don’t remember the first time I felt shame for my incontinence, but I remember the last time. It was just over a year ago. I had been laughing at something a coworker said, though I can’t recall what it was that I thought was so funny. That’s when it happens, you see, only when the force of the humor is so strong that I am completely overtaken with gut-bursting laughter, doubled over, my body curving in on itself as if it were trying to hold on to something invisible, some last tether to solidity, while everything else in me is letting go. The is air forced out of my lungs by my diaphragm in a whoosh; every muscle in my face squeezed tight as the initial convulsion of joy runs its course through my body in such a close imitation to its cousin, grief. It is in this moment that urine escapes my bladder. After the tremors of glee subside, I am left with a combination of endorphins, wet underwear, and, depending on what period of my life we are talking about, varying degrees of shame.

Childhood

I had no explanation for my incontinence as a child. Whenever it happened, I felt so incredibly alone and deeply ashamed. I never wanted to tell my parents when I peed, afraid they would be upset with me. I felt that it was somehow my fault. I was able to do everything else a girl of my age should be able to do, except control my bladder. I felt there was something inherently wrong with me; some innate badness. I did not have the words at the time to voice this distorted thought, or else surely I would have asked my parents for help. All I knew was that I felt defective every time it happened. If I had the language and awareness I have now, I would have reached out to my parents then. They could have helped me to understand that I had not failed them. They could have guided me to create tools to manage the effects of the incontinence when I was away from home. They could have taken me to see a doctor, who, even if she couldn’t help, could at least have given me the word “incontinence” to apply to my condition. This word from a trusted authority could have been a shield to protect myself from my own self-contempt and the disgust I anticipated from my peers if they were to have found out. But none of this happened. I was trapped in a prison of fear. And, like all fears, it was all the stronger because I did not realize it was there. I was too afraid of disappointing my parents to ask them for help. My fear prevented me from getting the comfort and guidance from the ones who could help me best. There was one exception to my silence: my older sister. I would sometimes tell her when I had an accident. She would faithfully check my pants to tell me how obvious the wet spot was or let me know if the jacket I had tied around my waste was covering it completely. Most importantly, she wouldn’t tell Mom and Dad. She was the only one I would allow to see my vulnerability and support me. But even her assistance was something I reserved for my most desperate moments, because it took a tremendous amount of courage to admit I had peed, even to my sister. Also, she couldn’t always be there to help.

 Adolescence

Creativity and resourcefulness were the silver lining to my compulsion to protect my secret. I became a master of hiding the accidents, because I could think of nothing worse than my peers witnessing my disgraceful weakness. I would often bring a sweatshirt or long-sleeved shirt with me on an outing, even if it was not cold, just so I could tie it around my waste to cover up the visual evidence. I would practice loosening the straps of my backpack to make sure that it would cover my butt from view. I would think of unique ways to stand or exit a room so that no one would see the back of me. One of my most poignant memories is from when I was twenty years old, old enough to have the language to address the shame and bring it out into the open in a way that would have eased my pain, but still too afraid and frozen into passivity. I was riding on a train with some friends and someone said something that set me off into so much laughter that I peed a fair amount onto the fabric seat. The familiar dread seeped in along with those uneasy thoughts about how I was going to hide my accident, while ruining the fun I’d been having at the same time. As we were exiting the train, one of the friends, who I did not know very well, set her hand on the seat I had occupied to steady herself, right on the wet spot where I had peed. I saw her hesitate, lift her hand and set it down again, as if confirming the wetness. I was humiliated. She did not mention it and neither did I. But for the rest of our trip, I was embarrassed to talk to her. She knows my secret, I thought. She must think I am gross and childish. If I could have gone back in time, I would have mentioned the wet seat to my friend before she had a chance to notice it herself. She probably would have felt sad to learn how deeply mortified I felt as a result of the accident. She probably would have reassured me that it was nothing to get distressed about, and helped put my mind at ease. But instead I kept silent and withdrawn, only to imagine the worst-case scenarios she might be thinking of me.

Recovery

My recovery from the shame of my body’s involuntary behavior has taken a long time to achieve and it has been a journey too in reclaiming my voice. When I was sixteen, I finally reached out and asked my parents if I could see a doctor about my condition. Allowing myself to hope that something could be done was a huge step, let alone finding the courage to finally ask for help. I learned that I had a legitimate medical condition called “urinary incontinence”. It actually had a name, which was a huge relief for me. The discovery took the responsibility off my shoulders, and allowed me to recognize that my body’s behavior was not my fault; it was not an inherent wrongness in me, but rather a condition I was born with.

The doctor told me the options were physical therapy and surgery. I chose physical therapy and learned how to do Kegel exercises to improve the muscle control of my pelvic floor. I have been doing these exercises ever since. They do not eliminate the problem but they do help lower the frequency of the accidents and the amount of urine that leaks. Putting to use this bodily tool was relatively easy compared to addressing the internal resources I needed to employ to heal my own self-dialogue. The first time I told a group of people about my incontinence was in a college class where we were asked to pick one aspect of our identities to share. After learning that identities could be invisible, I realized incontinence was a part of mine, even though I could go months without having an accident. At that moment I decided to bring it out of the shadows and claim it as part of me. It took a lot of courage to tell a room full of people about something I still held a lot of shame about, and yet, speaking my truth turned out to be a very cathartic experience. I was surprised to hear that another girl in the class had a younger sister with the same condition, which made me feel connected to something larger than myself. I started to wonder how many other people might be suffering silently in their own prisons of fear surrounding their incontinence, wondering too if they felt just as alone as I once did. It made me realize I wanted to share my stories with others in case I might be able to provide the knowledge or language that could be the key to them escaping their own, personal prisons.

As an adult I continue to find more tools to manage my incontinence. Since the greatest pains for me as a child were the feelings of isolation and dread, my favorite tool is a social one. I simply tell the people I am with that I have just peed my pants from laughing so hard. It is now a source of delight for me when I encounter a situation that my unique sense of humor finds so uproarious. I feel grateful to have so much enjoyment in my life. It can also be a sign that I have found someone whose sense of wit really aligns with my own to the point that it enhances our bonding experience. My release of urine is my body’s compliment to their comic artistry.

These simple tools might seem obvious to an outside observer, but they really feel revolutionary to me. They are devices that I could have been using since I was a kid, if only I had the language, the selfknowledge, and the courage to share my struggle and ask for assistance. My adult self is finally able to care for the child self in me, who couldn’t do so at the time, on her own. Over the years fear, shame, and guilt have at times over-shadowed my thoughts when it comes to my career, my health, and my relationships, and patterns of anxiety have is proportionately influenced my life going all the way back to my relationship with my incontinence. However, I am working to release my fear of disappointing people, as well overcoming those fears that have prevented me from taking care of my own feelings and needs. But even more important, I am learning to be increasingly gentle with myself and am having a kinder inner dialogue too. With the help of therapy, meditation, spirituality, supportive friends and family, and a lot of self-discovery, I am healing more and more every day.

Gratitude

I am now filled with appreciation for the potency of my laughter and I can see beauty in my incontinence. I am integrating this aspect of myself into my whole identity with expanding levels of compassion. There are so many benefits I receive from laughter including increased endorphins, exercise, pleasure, and strengthened connections in the form of shared joy with people around me. Maybe it is just that these gifts are so powerful that I am compelled to compensate with a release of something I usually hold tightly. There is the normal release of tension that comes with laughter. But for me, there is sometimes the release of a little bit of urine, too. I think it’s worth it.

people focus group

Focus Group Opportunity in the Chicagoland Area

If urinary incontinence is affecting your life, please help The Simon Foundation for Continence understand your challenges and give your input to help design a new program we are creating. The study focus groups are 90-minutes long and will take place in June 2019. Current locations are: Evanston, Chicago and Forest Park, Illinois.Continue reading

northshore supply

NorthShore’s Revolutionary Adult Diaper is Designed to Reduce Stigma Surrounding Heavy Incontinence

Over 80 million adults in the U.S. manage some level of urinary or bowel incontinence, and many millions more will be faced with leaks and loss of control later in life. The good news is many of these symptoms are treatable or can be managed using incontinence pads bought in stores. But what if that isn’t enough? For people who have heavy incontinence and need stronger, more absorbent products than those found in stores, their options have been limited to clinical hospital-like briefs. Until now. Earlier this year, NorthShore Care Supply, a Buffalo Grove Illinois-based company founded to empower those with heavy bladder or bowel leakage, unveiled its popular SupremeLite™ absorbent brief, now in vibrant shades of blue, green and purple. Read more.

Source: Newswire.com., April 23, 2019

patient education OAB

Free Interactive Education Program Announced for Those Living With an Overactive Bladder

According to the American Urological Association, approximately 40% of women and 30% of men live with overactive bladder or OAB. Many people with OAB find it difficult to talk to their doctor or loved ones about their condition because of the stigma associated with it. Pro-ficiency, a leading provider of interactive online patient education tools, announces its collaboration with the Academy for Continued Healthcare Learning (ACHL) and the Simon Foundation for Continence, in their joint, interactive program, to educate people about how to speak with their healthcare providers and their loved ones to get the care they need. The program also discusses treatment options, how to manage social and lifestyle considerations, and incorporating shared-decision making into visits with health care providers. The program is freely available to all participants.  “ACHL & Pro-ficiency previously collaborated on a highly successful OAB educational activity, however, given the depth and breadth of OAB, it was clear that continued education was needed. ACHL is proud to continue the education movement with this most recent program,” adds Amanda Kaczerski, with ACHL. Read more.

Source: Newswire, November 5, 2018

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Nearly Half of Women Over 50 Experience Incontinence, but Most Haven’t Talked to a Doctor

Nearly half of women over 50 say they sometimes leak urine — a problem that can range from a minor nuisance to a major issue — according to a new national poll.  Of more than 1,000 women between the ages of 50 and 80 who answered the poll, 43 percent of women in their 50s and early 60s said they had experienced urinary incontinence, as had 51 percent of those age 65 and over. Yet two-thirds of these women hadn’t talked to a doctor about the sometimes embarrassing, little-discussed issue. And only 38 percent said they do exercises that can strengthen the muscles that can help keep urine in. The poll shows they’re finding ways of coping on their own – from using pads or special underwear to wearing dark clothing and limiting fluid intake.  Read more.

Source: MHealth Lab, OCtober 31, 2018

silence, stigma, taboo

Time to Tackle ‘Taboo’ Over Continence Issues, Warn Charities

The 10 charities, including Alzheimer’s Society, Age UK, Marie Curie, warned that the taboo around the topic forces those affected to struggle in silence and more research is needed.  As a result, the organisations held a workshop where common problems and solutions for incontinence issues were discussed by patients, carers, researchers and clinicians. Others involved include Parkinson’s UK, Guts UK, the Urology Foundation, Devices for Dignity, the National Institute for Health Research, and the James Lind Alliance. A report based on the meeting – titled My bladder and bowel own my life and published today – recommends tackling the stigma and funding research into the issue. Read more.

Source: Nursing Times, August 22, 2018

microbiologist at laboratory work

Technology for Incontinence Hasn’t Developed That Much Since Ancient Egyptian Times

Today’s healthcare is full of technology that would seem like science fiction to our grandparents. But this is far from true in every area: some remain woefully neglected by innovation. Hop in a time machine back to ancient Egypt and you would find recognisable examples of the absorbent pads and catheters which are still a mainstay in the management of incontinence today.  The earliest known reference to an absorbent pad dates from 4th-century Egypt: the female scientist Hypatia is recorded as having thrown her menstrual rag at a student to ward off his infatuation with her. The pad remained a homemade “product” for many centuries until the 19th century, when manufactured versions of reuseable “antiseptic cotton for absorbing discharges” could be purchased from pharmacies. Disposable pads, first produced by Kotex in 1920, were in widespread use by the late 1930s. Since then, the only major innovation in their design has been the introduction of super absorbent polymers in the 1980s, which have dramatically improved absorbency. Read more.

Source: The Conversation, July 30, 2018

Finding Freedom and Eliminating Stigma

My Story – Submitted by: Waldo

This story was originally published in the Danish magazine Vertel.  You can access the original story and photos here: https://www.medireva.nl/wp-content/uploads/MEDIREVA-Vertel-lente-versie.pdf

Here is the author’s English translation, which he has asked that we share with you.

Dear reader,
I would like to share my personal story with you. I want to contribute to the elimination of the stigma and the taboo around incontinence. Continue reading

catheter coating research

Incontinence Affects More Than 200m People Worldwide, So Why Isn’t More Being Done to Find a Cure?

For a chronic health condition that causes shame and misery for countless people and costs billions, urinary incontinence keeps a low profile.  Media reports about chronic health conditions appear with alarming regularity, but it is rare to read about the debilitating impact of the involuntary leakage of urine. Nevertheless, urinary incontinence is a condition which, next to Alzheimer’s or strokes, is reported as most negatively affecting “health-related quality of life”.  The reasons for this are not too hard to fathom. Urinary incontinence, of course, elicits some embarrassment. And there also seems to be a feeling this is a low priority condition: urinary incontinence does not directly bear up against the terrible impacts of life threatening conditions and illnesses. Read more.

Source: The Conversation, February 14, 2018

woman India

Friends Adult Diapers Flags Off Its First Ad Campaign

With the campaign, Friends Adults Diapers aims is to blow the lid off the issue and show how liberating life can be again for a senior who is homebound due to incontinence.  Adult Incontinence is considered a taboo across in India, it is brushed away under the carpet and ignored like it doesn’t exist. The brand has launched the country’s first ever campaign for the category, bringing the spotlight on the subject, in a unique light-hearted manner that’s bound to resonate with people across the country.  With the campaign, Friends Adults Diapers aims is to blow the lid off the issue and show how liberating life can be again for a senior who is homebound due to incontinence; how one product can bring about a life-altering change in the lives of our elders and how accepting the problem and its solution can leave the senior citizens with happiness and freedom in the last leg of their lives.  Read more.

Source: ETBrandEquity.com, November 24, 2017