I have been reading many of the KosAbility diaries here recently that have a great deal of familiarity to me. Diabetes: A Love Story, Bedwetting, Bursitis, Peripheral Neuropathy and even Menstruation Misery . All have aspects that have entered my life over the many years. But there is one diary that I have not seen, one that most people don’t want to talk about, the Final Taboo, incontinence. I say the Final taboo because it affects millions of people daily, it affects 1 in 3 women in their lifetime, 1 in 5 men, but nobody wants to talk about it, not even to their doctors, friends or spouses.
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
When we were born, our parents took us home from the hospital and immediately began the ritual of diapers. For the first few years of life, our young bodies are not able to control our waste removal process, so it just comes out. Our parents put us in diapers to keep the urine and fecal material contained. Babies are effectively incontinent and nobody thinks twice about that. But as children get older, the parents want them to take on more responsibilities, one of the first is to gain control over their bladder and their bowels. Parents use various techniques to potty train their children, the most common are indoctrination and intimidation.
• “Only babies wet themselves”.I think you get the picture. The roll of a parent is to get their children potty trained before they enter kindergarten, hopefully much sooner. For the rest of their lives, these children associate losing control of their waste products as babyish and shameful, mostly due to this early indoctrination. Most of these children grow up with the ability to keep control of their bodily functions, but some don’t. I’m going to talk about the ones that don’t.
• “Be a Big girl so you can wear Big Girl panties”
• “Accidents will happen, don’t be a baby”.
• “Only babies wear diapers, you don’t want to be a baby, do you?”
When I was 4 years old, I very distinctly remember wetting my pants at home one day. I know I was potty trained. I know I wasn’t lazy, it just happened suddenly. I was scared. I didn’t dare tell my parents, I’d probably get spanked. So I took off my underpants and threw them away in the garbage, never to be seen again. The pants I think I hid, I don’t specifically remember, but I do remember the fear I had letting anyone know what had happened. When I started kindergarten, I was a little scared at first, but soon I felt confident that everything was going to be fine until one day during nap time, I wet my pants. I don’t know how it happened. I couldn’t remember ever wetting the bed at home, so this was very strange. Luckily, my pants were dark enough that the teacher didn’t realize what had happened so I spent the rest of the morning in urine soaked pants. Again I came home and hid the pants. I didn’t want to tell anyone what had happened. I was embarrassed, shamed, big boys don’t wet their pants. More incidents happened over time, each as scary and shameful as before. Once when I was 12, I really lost it. I not only wet my pants, but I did the other one too. Shame on me. In many ways, it was torture.
I won’t bore you with details, but from that first wetting episode, I continued to have small accidents at home, at school, at night. Not every day, sometimes not every month. Most of the time, I didn’t think about having an accident. Then suddenly, with no warning, I’d wet my pants. I went through grade school, junior high, high school and college with my secret, I told nobody and I don’t know that anyone knew of my problem, but I sure knew. I was too embarrassed to say anything, even my parents, surely not a Dr. In college, the situation seemed to get worse, no longer were these little accidents, I’d suddenly let loose unable to stop the flow. I was mortified anytime this happened. It was during this time that I learned that black pants hide many things.
Life went on and soon I got married to a wonderful woman. We were very happy, but I had this deep secret that I didn’t wish to even tell her. I soon was not given a choice. One night, I woke up in a wet bed. I hadn’t wet the bed since school, but there it was. There was no hiding it. Over the course of a year or so, it happened again, and again. My wife was getting sick of waking up in the middle of the night to change sheets (I did the changing and washing, she found a spare bed). I had to tell her the whole story. She insisted that I see a Dr. I was about 26 years old. I was scared. I didn’t want to talk to the Dr. about this. He’d think I was some kind of baby. I was ashamed, but my wife was right, I did need to see a Dr. So I got up the courage and went. Amazingly, the Dr. didn’t seem to make a big deal about it. He didn’t laugh at me. He scheduled me for a whole bunch of tests: X-rays, urodynamic tests, catheters up my Yoo-hoo, you name it. At the end of the day, they found nothing. All the tests were normal, no problem. At least I knew that I didn’t have cancer or something bad, but it didn’t do anything to help me. I didn’t spend much time questioning the Dr.; I just wanted to run away.
The problem didn’t run away. I would go for months without a single leak. I would totally forget that I had a problem and wham, with no warning, a flood. It happened while I was driving the car, it happened eating dinner at a restaurant, once it happened at my friend’s wedding. I didn’t know what to do. I thought that I was the only person in the whole world that wet his pants. I felt so ashamed. You cannot imagine the stress this put on me. It seemed the more stress, the more chances of wetting myself. It was catch-22.
Then one day while walking through a drug store, I spotted a package of disposable adult diapers. I had never seen anything like this before. Up to this point (1980s), June Allison hadn’t begun her “Depends” commercials, so incontinence was a subject so taboo that nobody talked about it. But here they were. That was the first sign that other people might have a problem like mine. My Grandpa was facing incontinence problems too, but he wasn’t as good at hiding his wet pants. They moved him from assisted living facility to the nursing home. I learned that most of the nursing homes were populated with old people that couldn’t control themselves any longer. So diapers were now for babies and old fogies that were in final stages of life. You get born incontinent, some die incontinent, kind of like the riddle of the phoenix. That really didn’t make me feel better. Not only that, but my problem was so sporadic, a diaper really wasn’t going to help me. I was 30 year old and definitely not ready for the nursing home crowd. But I was not a baby either.
One day I woke up in a wet bed. I cleaned up as usual and went to work. A few hours later, I felt wetness down there. Horror of horrors, I had wet my pants again, at work! I managed to get out of the office and went home to change my clothes. Went back to work, went to lunch and mid afternoon, I wet my pants again. I had no warnings. This was very strange and very scary. I managed to tell my boss that I felt sick and was going home. I don’t think he realized what had happened, good old stealth dark pants. At home, it happened again. I had no control. I decided that maybe those diapers at the drug store weren’t such a bad idea after all. It really took much longer to figure this out, but I’m trying to keep the pace of the story from being too repetitive. I got up the nerve to take my large package of adult diapers to the check out stand. I was sure everyone in the store was laughing at me, the clerk surely would. My heart was pounding. I don’t know what scared me more, the worry of wetting my pants again or the worry of people laughing at me.
The next day, I went to work wearing a diaper. Talk about low self esteem. I had to smuggle in spare diapers so that when I needed to, I could change in the restroom. Mid morning, I needed to change. Going into the restroom was scary. I waited for everyone to leave before beginning to change. Disposable diapers are noisy. Sometimes, I’d be half way through changing and someone would come in. I would freeze. I feared that someone would figure out that I was wearing a diaper and laugh at me or worse, tell everyone at work. This was a terrible time in my life. I didn’t know what was going on and as far as I knew, I had a bladder of an Alzheimer’s patient. After a few days, I’d get a feeling back that I needed to go to the bathroom and I was able to stop wearing diapers. That would last sometimes for several months, sometimes a few weeks, and then a new wet cycle would start again, usually with me wetting the bed. Again, I won’t bore you with details, but this went on for 20 years, off and on, sometimes worse, sometimes not.
Then one day I applied for life insurance. I had a growing family and it seemed like the right thing to do. The agent scheduled an in-office “mini-physical” where they ask you a bunch of questions, take your blood pressure, weigh you, and take a blood sample. A week went by as the blood tests were run. My agent called to tell me that he couldn’t write a policy on me because I was an out-of-control diabetic. That was a complete shock. I don’t recall being aware of any of the symptoms of diabetes, no family history, nothing. I went to my Dr. and sure enough I was diabetic. So we began the task of getting my blood glucose (BG) under control. That was a whole education process all by itself. There was no internet at the time, so there was only the stuff in books at the library or the encyclopedia and what the Dr. told me. I managed to get my BGs in control. At this point, I had no clue that there might be a connection between my diabetes and my incontinence. I hadn’t talked to my Dr. about my incontinence (not the same Dr. as the earlier one), I was too scared, I just suffered in silence.
It is time that incontinent people be allowed to come out of the closet and have no fear of being ridiculed. When you have little or no control over the body’s spigots, there is no telling what will happen. That is the worst of it all, the unknown. It isn’t a joke. You may discover that it will happen to you some day. I hope not. In a few weeks, I'll continue this diary to discuss how chronic illness can cause problems that we don't like to discuss. You don’t win in this game, but at least people can learn to talk about it without shame or embarrassment. Please! The floor is yours. Don’t pee on the carpet.
If anyone feels they have questions that need to be kept private, I’ll response to private msgs in total confidence. I respect that many people have not made the transition to complete openness.