My Story – Submitted by: Nora
First, thank you Simon Foundation for allowing voices to be heard on what has been past stigmatized and silenced.
I am a woman in my thirties who has struggled with incontinence my whole life. I hid my condition for a long time, because I had learned to feel shame and guilt and act in denial.
As a child, I wore diapers day and night almost into school years. I had gained control over my bowels, but not my bladder. My parents’ reactions of frustration usually meant punishment whenever I was incontinent. I thought I was really a bad kid, making my Mom change me and wash all those cloth diapers. My Dad regularly spanked me while informing me that, “only babies wear diapers. It is bad to wet yourself.” And they asked, “What do the neighbors think seeing all those diapers hanging on the clothesline and no baby in the house?” When I was four and with my Mom buying a set of Curity baby plastic pants, a saleslady questioned me, “Aren’t you a bit old to be wearing diapers?” I did a lot of crying then. I was very sad and very confused.
I decided that if I wanted my parents to be positive about me and if I wanted friends to be around me, I had better stop wetting myself. If I continued to wear diapers I would be sent to another school and could not attend the same school as my brother. I was determined not to wear diapers to school, but I lived with constant and terrible anxiety. I remember trying to hide wet clothes, and hoping they would dry before anyone noticed. I remember trying not to drink too much, and rushing down the hallway several times a day at school to get to the bathroom, having to clean up and return to class before the next urge struck. I made futile attempts to help myself by stuffing wadded toilet paper in my underwear. I tried to be “sick” as many times as I could to stay home.
I hated going out anywhere especially for shopping and traveling because I would end up panicking trying to find a toilet and fearing my Dad’s anger at me for having to stop, yet again. He threatened that I would be put back in diapers, if I did not co-operate and stop wetting myself. I said “No, no diapers”, but really I wanted to say, “Yes, please a diaper would really help me”. I would try not to fall asleep in the car because I might wake to a wet seat. In all this, the family doctor simply said I would outgrow the condition. I won’t even talk about being forced to go to camp and pleading with my Mom not to indicate bedwetting or daywetting on the camp form (she didn’t.) I do recall seeing a box of jumbo Pampers on the shelf at the camp’s nursing station and thinking how it would be nice to wear a diaper so that I would be more comfortable and less anxious. But, I had learned that only babies wore diapers and I didn’t see any other kids my age wearing them.
As a teen, I did not socialize often outside of school and so stayed home to avoid accidents. I started mapping out how far and how much time I might have until I had to go again. I only went out if I absolutely had to, and if I knew there was a toilet in reach. I took to sewing up some of my own invented protection to avoid suspicion. For my early adulthood, I treated incontinence with further denial. Although I was living an independent life, I did not take good care of myself and looked to self-blame and self-loathing amongst other negative tactics. I did not seek help and my undergraduate university degree took a long time to complete. In those days, there were all kinds of justifications and excuses made for absences in class and unfinished assignments. I was frequently depressed.
As time has passed, I have come to realize the cause of my incontinence in several factors: 1/ unnecessary anxiety, stress and depression 2/ internal injuries from early childhood sexual abuse. I have sought information and medical attention for my condition and try to integrate my confused early life into the present.
I continue to come to terms with the difficulties of an earlier life. I am pleased to say, I have a very loving and understanding husband and I travel and enjoy life as freely as I can. I am healthy and I continue to learn how to treat myself with the kindness and care that I know I deserve. Yet, I know it is very easy to slip into old-habits that have been formed by a lifetime of silent coping.
Yes, I do wear diapers/briefs/protection when traveling and being in other stressful situations. The wearing of a diaper now is for me an informed decision to choose a non-medicinal and non-surgical form of treatment. I receive reassurances from my husband that all is well, that I am okay and I am loved.
Yes, I am more than okay. It has taken a lot of courage to write this. In fact I have written my story several times over the years to the Simon Foundation, but never sent it. These days, I am active in graduate school, and parallel to that work, as I journey forward, I hope that by sharing my story it may give support, insight and openness offering a voice of understanding to others who may struggle and feel alone with incontinence, a condition that is often hidden and unfairly regarded.