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.

Beaten and Bullied

My Story – Submitted by Anonymous

Hello.  i absolutely love what y’all do. standing up for people that get judged and labeled by those without disabilities. i’ve been incontinent since the age of 14. before that as a young child i always had bed wetting issues. my parents were not so nice or understanding about it. especially my father. he was plain cruel. Continue reading

Intractable Urinary Incontinence Despite Treatments and Surgeries

My Story – Submitted by: Marguerite

I have suffered from intractable urinary incontinence for 20 years with many treatments and no success.   I have undergone the so-called gold standard Burch Procedure surgery during which time I acquired Clostridium difficile in the hospital.  I have had vaginal mesh surgery. I have  tried Medtronic’s Interstim implant in my buttocks to stimulate my sacral nerve (which later was removed as no longer functioning) and have had several infusions of botox in my bladder. I have had cocktails injected to treat (non existent) interstitial cystitis and now I rely on self-catheterization to Continue reading

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

Radiation and Cancer Surgery Causing Urinary and Fecal Incontinence

My Story – Submitted by: Jennifer

I was diagnosed in late 2016 with Stage 3 rectal cancer.  I underwent 45 days of radiation and chemotherapy to my rectum and surrounding area. Six weeks later I had a lower anterior resection where the surgeon salvaged as much rectum as possible and reattached my sigmoid colon to the remaining rectum. I am currently undergoing clean-up chemo, however, as a result of radiation and surgery, I have been left with severe urinary and fecal incontinence. Continue reading

New Beginnings After Incontinence

My Story – Submitted by: Gene

My name is Gene and I’m a 52 year old male. About 5 years ago I began to slowly lose control over my bladder due to a small bladder tumor. After having the tumor removed I found myself incontinent.

Being incontinent and trying to return to school or work seemed impossible for me at first. After my surgery I wasn’t able to return to my old job. Managing my problem at home was hard enough, but at work or school — no way!! There seemed to be little info available out there about practical day to day management. So I thought that this letter might help those out there that also find themselves at this point.Continue reading

Adult Nocturnal Enuresis (Adult Bedwetting)

My Story – Submitted by: Colin

Nocturnal enuresis (the clinical term for bedwetting) effects millions of youngsters worldwide. Most young people outgrow it or are able to be cured of their bedwetting using bedwetting alarms, medicines, surgery, or other methods. What many people may not be aware of is the fact that a large percentage of adults suffer from this problem also and some of these deal with the issue their entire life. It’s estimated that as many as 1 to 3% of adults have problems staying dry at night. These figures could be significantly higher and it’s likely the real figures may never be known due to the attendant stigma surrounding adult bedwetting – as Cheryl B.Gartley, president of the Simon Foundation for Continence says: “Bedwetting is a closet issue within the closet issue of incontinence.” These individuals resort to wearing some form of protection to bed such as disposable diapers, cloth diapers, or plastic pants. Unfortunately these individuals are stigmatized by the public – bedwetting seems to be viewed more negatively than other forms of incontinence, why this is so is puzzling to me.  The people suffering from bedwetting are reluctant to form relationships with people – imagine having to tell your significant other you have to wear diapers and plastic pants to bed – and are reluctant to spend the night at friends houses. Additionally business trips can be a nightmare for the adult plagued by bedwetting.Continue reading

Woman with Incontinence Due to Injury

My Story – Submitted by: Davida

What a beautiful day it was. July 27, 1997­, the sky a brilliant blue and, in spite of the dazzling sunshine, cool and delicious. It was my birthday and I was riding Adoro, my thoroughbred four year old gelding, sweet and wise beyond his years. We were making circles in the corral when he stumbled. He never fell (and neither did I), but he tripped on something and stumbled, brought to his knees for only a moment. I fell forward onto my saddle’s high pommel (like the horn of a western saddle). As Adoro righted himself, I did too, but the damage had already been done. My impact with the saddle had destroyed my urethra and seriously injured my bladder. There was blood everywhere and, suddenly, I was incontinent.

Continue reading

Teenager with Enuresis

My Story – Submitted by: Johnny

I’m 14 now, and have always been a bedwetter. I wet on average 4-5 times a week. I’ve had all the tests and a few treatments, and nothing has helped.

I share a room with my brother (he’s one year younger) and a few years ago after his constant complaining about smell and being woken up while I changed my sheets, my Mom finally decided that diapers would be the best solution. Continue reading

Teenager Using Absorbent Products after Car Accident

My Story – Submitted by: Liz

I’m 17 years old and I was in a car accident at age 14. The accident left me with many internal damages which included my bladder. Since then, I have not been able to control my bladder. I am forced to wear diapers all the time and it is so embarrassing, especially at school. Continue reading