www.incontinentsupport.org

Hello everyone!

I'm reading with interest the post about acceptance of one's incontinence. The question I have is how did you all get to that point? I have had a heck of a time trying to get there.

Part of that is probably that I don't necessarily always have a problem. Yes, I do have dry days, but most of those are punctuated by more stress and pain. I have found that I carry stress in my muscles, which results in some pain, mostly in my left side. Some of that stress is probably stressing about incontinence, so when I stress about it, my muscles all tighten up and I can hold it fine.

When I succeed in accepting myself, I feel much better all around, but of course have a problem with incontinence. (Which gets me stressing all over again...)

Every doctor I have seen for all this pain and incontinence has treated the incontinence part as if it were nothing. I actually had one tell me that it was "no big deal." This doesn't really help since I keep hearing about how it should be medically treatable.

Anyway, any help in how to get to acceptance would be great.

Hi Rocketman, and welcome to our site and forum! Thanks for contributing.

You've asked a difficult question...how did we, that is the "we" that accept our incontinence, come to accept that incontinence. I will be most interested in seeing replies to this question, myself.

Acceptance of any situation is so personal and we all deal with things so differently, that there is no answer that applies to all. Life deals out lots of situations and when you consider dibilitaing illness, disease and paralasis, just to name a few, that should put incon in a perspective that, for most people, isn't such a big deal. Of course there are those who will make a big deal out of a splinter in a finger, but they are a small minority. Applied to incon, they are the "woe is me" group that will never get over it and "suffer" needlessly....since they are really the ones causing their own suffering.

Yes, incon is a nasty blow. I won't make light of that. But what you do about it is in your control and if, after all the trips to the doctors, you find it is not going to go away, then you find a management system that works for you...drug therapy, timed toileting, external caths, diapers....and you get on with life.

You've mentioned pain is a major component right now and wonder if the pain is stress related to incon. I won't guess anything here. You didn't say if you are using diapers but since that's the most common and practical way to deal with leaking, what happens-pain wise-when you are wearing protection? I am wondering if you wore diapers "just in case" even on what you might consider dry days, would the tension be lessened or eliminated if you have no worry about an accident and resulting wet pants? If that turns out to be the case, then would acceptance of diapers be the issue? If you get pain relief thru stress reduction which results from relaxing your body by not worrying about a leak, then diapers are a legitimate "treatment".

My personal answer to acceptance: I was born with the incon, so that part doesn't apply to me. I was never continenent and so never suffered the emotional trauma of losing control and having to resort to diapers. But I had a problem accepting diapers until I had tried everything else and I went thru much emotional stress trying to get by in life without diapers. Eventually I came back to diapers and discovered how much of life I had been missing while I was so wrapped up managing the icon. For me, diapers make my incon "go away" and I can live my life.

This is the first time that I have responded to comments on this web site.
First, let me applaud those who have established and maintained it. The information and suggestions offering wonderful support to those of us suffering with incontinence.

The comments of Joe K are very well stated. Those of us with incontinence may have been dealt a bad hand, but there are far worse medical conditions that others live with, so in fact, maybe we are the lucky ones. Yes, we face inconvenience and social discomforts, but we do, and can, cope. Most of us fortunately have good enough health to lead active positive lives with friends and family who give us a little extra support and understanding of our situation.

Like Joe K, I have been incontinent my entire life, so I've never faced the loss of bladder control. I often wonder what it would be like to be continent, but will never find out. Growing up was difficult, and full of shame. Like many incontinents, I had a hard time developing friends and social activites. But, eventually I overcame the stigma of incontinence and grew to have a family and wonderful life.

I notice regular comments on the forum regarding diapers. Well, diapers are just part of life for many incontinent people. Those who cannot walk have a wheel chair, those who can't hear having hearing aids, and so on.
I don't consider diapers anything more than an aid to manage our disability.

When I was born, 58 years ago (guess I shouldn't mention age but why not?) my mother had diaper service for me. There were no disposables then. The diaper service truck still comes each week, and I consider it a blessing. When our children were babies we had the same diaper service for them. In fact, each week 5 bags of diapers were delivered, one for each of the girls, and 3 for me. Fortunately, the girls are not incontinent, but still giggle a little when they are at our house when the diaper delivery is made.

I do use disposables when away for long periods, and found the resouce guide from the National Association of Continence to be very helpful in guiding me to good product choices.

Hope I didn't ramble too long, and that my comments might give comfort to others.

Martha

Hello everyone and thankyou for posting this question.

I know that a lot of people have asked this question, even if its only in their minds.

I myself became incontinent after being ran over by a car in 1987. I spent 4 years in 7 different hospitals getting treated for all my injuries. Im doing better now but have total urinary and bowel incontinence as one of my medical problems that ill have for the rest of my life. It was hard at first to accept my incont problems and being in diapers again. I went through a time that I was a little depressed about it, but all that gave me was more problems.

When I became incontinent, there wasnt an internet where we can look for answers and chat with other people that also had the same problems that we do. There was very little informatin in the libraries and what was around wasnt very informative. The medical dr's didnt have all the fancy tests that they have now. Even now, there are very few websites that people can go to for help without someone trying to sell you something
or trying to tell you about their fetish. Thats one reason why we started this homepage. Im not trying to put down peoples fetish, but this is a medical problem that we have been delt and have to live with. There are people that are blind, deaf, or have other medical problems that are more serious, like cancer, that still lead a normal life.

What helped me to accept my incont problems was seeing other people that had more problems than I did and was doing ok. I saw a small kid that had cancer that had to have his legs removed and was in a wheelchair. He was laughing with the other kids and trying to get a basketball game going. I asked him how he can keep a good attitude with all his problems. He said that he was lucky, he had friends that helped him get around.

No matter what our problems are, there are still people that have it worse. I consider myself lucky, I have my life, I can walk, I have my own house and car, and of all the medical problems that I have, wearing diapers is minor. I can go to a movie and not have to get up every few minutes to run to the bathroom. I can sleep all night and not have to worry about my bed being wet and messy in the morning. I can go to the store and not have to worry about leaving a mess on the store floor.

Having incontinence is NOT the end of the world. Yes it does change how we go about our every day activities, and we do have to deal with it, But it doesn't have to controll our life. All we can do is take it one day at a time and keep going. Life is too short as it is to worry about a small thing like having incontinence. Its all a mater of perspective. I figure that if I ever get married and start a family, ill be a great dad. I know how to change diapers hehehe.

I guess that accepting my incontinence has been easier for me than for some others. My genetic disease attacked my spine, making my arms and hands and legs and feet numb and clumsy. But that doesn't mean that I have no pain. Imagine sciatica of the bladder. At its worst, my bladder held a measured 1.25 ozs., and went into an excruciatingly painful spasm every ten - twelve minutes. When the urologist infused RTX into my bladder to kill the nerve endings, and gave me a sphincterotomy, the relief was enormous. I had lived on morphine for too many weeks. Sure, I'm incontinent, with no hope that I'll ever be able to function without diapers and plastic pants, but the alternative was unbearable. Being incontinent is a positive joy, compared to what I endured before. Does that make me AB/DL? NO. But it does put the exasperation and aggravation that incontinence causes into perspective. Carl

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Carl

I have been in diapers since birth also and haven't had too bad a time functioning in society. In elementary school the fact I wore diapers wasn't a big deal. All of my friends knew and my teachers were supportive. I wouldn't always know if my diaper needed changing so they set up a schedule with the school nurse to change me during the day. I remember friends telling me I needed a diaper change and I don't recall anybody teasing me about it. I would go to the nurses office, she would change me and I would be back playing at recess before you knew it.

Look at the bright side at least your kidneys work! I'm thankful for that. I have found diapers that won't leak and I can wear all day. With protective pants I can go anywhere and do anything. I just won't have to run to the bathroon every 15 minutes! I use Abena X-plus

My life with incontinence.

I was born with what was is called a Neurogenic bladder which means the nerve paths between my brain and bladder aren’t wired exactly as the schematic had called for resulting in my not gaining daytime bladder control until I was eleven years old and my never having nighttime control. The first memories I have of my incontinence being what you might call socially unacceptable is when I started kindergarten.

Mom had called the school and they said if I was still in diapers at the start of the school year I would have to attend another school across town that was equipped to handle children that were quote ”like me”. She asked what that meant and they said it was for children with mental and physical problems where they had the staff to provide the extra attention that they need. She argued that I my problem wasn’t severe enough to require that type of setting. The school said it would be disruptive to the other students if I attended a regular class where the teacher was constantly having to put everything on hold to send me to the nurses office when I needed changing so to be fair to the other students and to me they couldn’t allow it and she was also told she would have to drive me there each day, (back in the fifties they didn’t have special education busses). She talked to dad and told him that when she grilled them about what kind of educational instruction I’d get there they pretty much admitted that it was nothing more then a day care facility and there was little if any educational instruction given to the attendees and she emphasized that they didn’t call them students. They both were adamant that I wasn't going to go there and I wanted to go to the same school as my friends so mom got to work and through trial and error came up with a system that I could handle myself and wouldn't require the dexterity needed to deal with diaper pins (Velcro hadn't been invented yet) It could get me through to the mid morning recess when I would be able to change myself and finish the school day which was until just past noon. After much arguing mom got the school to agree to give it a try but they said they’d only go along with it as long as I was able to manage it on my own and it wouldn’t be disruptive to the class. Mom drove it into me that if I didn’t pay attention at school and keep myself changed when I needed to I’d have to go to that other school and not be with my friends; she had me practice for days before the school year started.

There was a company called Kliernerts that made a pad and pants system for bedwetters that was a snap on pant made of a nylon type material with a thin narrow liner that snapped into the front and back of the waist bands and after a the first day trying them at home it was obvious they were virtually useless. They had no fluid capacity to speak of so they leaked like a sieve with even a moderate wetting. My mom took some diapers and cut them in half and folded and sewed them onto the snap in liners to give them some badly needed absorbency and I wore a pair of plastic pants over the Kliernerts pants. I took a change of liners to school with me in a lunch box and I had a small zippered plastic bag to put the wet liner in and I would change in the bathroom during the mid morning recess.




One time when I was changing a couple of kids I didn’t know because the lived in another part of the neighborhood got suspicious and looked under the stall door; they teased and made fun of me unmercifully until my teacher told them to knock it off. When I told mom what had happened she said I’d have to ignore it because if she said anything to the principle about it they’d make me go to the other school. Whenever something like this came up mom would remind me of dad’s favorite saying; you play the hand your dealt and don’t complain about it. He knew the pressure that wearing diapers around the other kids put on me at times and he’d try to cheer me up when it started getting me down. Once he told me; your mom and I know the kids can make it pretty hard on you sometimes because you have to wear diapers and we wished there was something else you could do but there just isn’t and the doctors have told you that you’ll probably quit wetting when you get a little older so your just going to have to tuff it out until then; but if a kid gets after you too hard you have my permission to knock his block off but don’t tell your mom I said so. I wanted to several times but never did because I knew it would get me kicked out of there. Even with the extra absorbency mom had added I sprang leaks frequently and my mom kept dark pants on me to help hide it. My teacher never said anything to the office about it because she knew I was really trying hard and she felt sorry for me so she kept me out of sight of the staff when I had leaks.

The thing I most disliked about the Kliernerts was the insides of the pants had a kind of rubbery type waterproof lining on the inside and with the pad being so narrow there was plenty of that lining left exposed and after I had worn them for only a little while my body heat would cause the lining to stick to my skin like glue and that really bugged me. I was constantly pulling at them through my outer pants to peal them away from my skin and wearing plastic pants over just created even more heat which made it all that much worse. By the end of the school day I was so sick of those pants sticking to my skin I couldn’t wait to get home because as soon as I got there I knew mom would have me change out of my good school clothes and put a diaper on me so she wouldn't have to worry about leaks.
When I finished kindergarten my dad took a vacation and we drove back to Cleveland Tennessee where he was born and raised to visit with his brothers and sisters that still lived there. Before the trip mom told me that I would have several cousins back there to play with and that had me worried. I had never met any of them and I they didn’t know about me wearing diapers where as all my friends at home did and never paid any attention to it because they’d seen me in them there entire lives and they were used to it. There was something else too; back then clothes dryers were pretty much unheard of and most people used clothes lines and at a couple of my buddies houses it wasn't unusual to see diapers and plastic pants hanging on there clothes lines a couple of times a week and they didn't have any brothers or sisters so I knew I wasn’t the only one wearing them; at least at night anyway. I talked with my mom about my concerns and asked her if I could wear regular underwear while we were back there but she wouldn’t have any part of it.




She said lets say I did let you wear them; then your cousins would see you wetting the furniture; I’d have to take you to change your clothes while their mom cleaned up where you leaked and everyone would have to avoid sitting there until it dried. Then every morning they'd be right there in the bedroom to see your wet bed and we'd have to change it and wash the blankets and sheets. Now maybe you don’t think so but if it was me that would be worse than wearing diapers while I was there. I had to grudgingly agree with her. When we were only a couple of hours away out of nervous desperation I asked mom again about the underwear.

She said when we get to your Uncle Jack’s house were having big get together and lunch with all the family members there to welcome us and I'll have a talk with your cousins and it'll be alright but I told her it wouldn’t help.
She said yes it will and I’ll tell you why. When kids see someone their age doing something that seems unusual to them because they or their friends don’t do it that gets their curiosity up and draws their attention to it. And if it’s something they think would be awful if they had to do it themselves like wearing diapers it makes them feel nervous and uncomfortable also. The reason grown ups don’t pay any attention to it is because there old enough to know there has to be a good reason why your wearing them but kids don’t think about that; they see the diaper and that’s it and so they start giving you weird looks and treating you badly sometimes. So what am I supposed to do I asked her?
If we tell them why you’re wearing them so they can understand the reason for it they won’t be curious anymore and as soon as they quit feeling nervous and uncomfortable around you they’ll treat you the same as the other kids; she promised it would be ok but I still didn’t believe it.
Well sure enough as soon as we got there and they spotted the diaper outline under my pants the whispering and giggles started. After we got our stuff in the house mom told my aunts she wanted to have a talk with the kids and they got them together and mom asked me if I wanted to leave and I told her yes and went into the other room but I could still hear what was said from there.

She explained to them what the nerves in our bodies are and how they send messages back and forth to our brains about what's going on in our bodies. When she was sure they understood that part she explained what the bladder does and that because the nerves between my bladder and brain aren't working yet the bladder can’t send the message to my brain that it’s getting full and so I don’t know when it’s time to go to the bathroom like they do and when the bladder just can’t hold anymore it has to empty no matter where I’m at.
She said my nerves were fixing themselves more every day and before long I’d be able to tell when I needed to go like they can but until then I’d have to wear diapers and to my surprise it actually worked. They apologized to mom for making me feel bad and after that they began treating me the same as all the other kids.




A couple of days before we started back home we went over to Aunt Carol’s and uncle Buds house to stay. They had a girl Linda that was seven and a boy Kenny that was a couple of months older than me. Both of the kids had been in on mom's talk so I had no problems there. Each night while we were back there mom would quietly ask me if I needed to be changed and if I said yes she’d go with me and if I said no she’d tell me to go get into my PJ’s and hop in bed before the other kids came in. The first night at Aunt Carol’s mom waited until my aunt said let’s get you two boys ready for bed and they both started escorting me and Kenny down the hallway. I was upset because I couldn't understand why mom had let that happen so I wouldn’t have any privacy getting into my PJ’s but as soon as we got in the bedroom it became clear; while mom was helping me into my PJ’s Aunt Carol was busy diapering on Kenny for the night. Mom told me when we got home that they had arranged the stay at aunt Carols for my benifit so I could see I wasn't the only one wearing diapers.

Soon after I started first grade mom found an ad in the back of a magazine from a company that specialized in bedwetting products for children and teenagers. She sent for a catalog and ordered some training pants in my size and I started wearing two pairs of them under plastic pants at school and they worked better then the Kliernerts but were almost as uncomfortable. They had several layers of material in them to give them the absorbency they needed. The inner and outer layers were cotton so that part was fine but what ever they used in the middle was very stiff. No mater what mom did like soaking them overnight or boiling them it didn’t help and it felt like I had a wadded up piece of cardboard between my legs all the time but they were still better then the Kliernerts. One other thing that was a problem with them also was changing them during the winter. You’ve heard the old tale the parents tell there kids about walking through twenty miles of snow in a blizzard every day to get to school? We lived in the Rocky Mountain region and while it wasn’t twenty miles it was more like five blocks and there weren’t blizzards everyday trust me there was no shortage of snow and most of the time it was very cold. I wore a two piece insulated snow suit and a pair of tall lace up water resistant boots most of the time to and from school. Taking those boots and my Levi’s off to change was a real pain so mom cut the training pants down the sides and put buttons on the back edges and button holes in front edges so I could change them without having to completely undress and that took care of that problem.

At about seven I began feeling a little self conscious about mom changing me and I started trying to do it myself. I wasn’t having much luck with the pinning part because every time I’d get up off the bed the diaper would fall off. Mom caught on to what I was doing and for a couple of days gave me some pointers and helped me with it until I got the hang of it and all she did after that was the laundry part of it. Around eight I got to where I really resented having to wear diapers at all and switched over to the training and plastic pants during the day despite the discomfort but mom was insistent that I stay with the diapers at night.





When I was eleven I finally got to where I had enough daytime control to switch to underwear during the day and my dad was getting tired of working through the winters back there. He had enough seniority with the company to transfer to the company’s southern California operations. Seeing that town getting smaller in the back window of our car as we were leaving was the happiest day of my life because I was going to have new friends and go to a new school where no one would have any knowledge of my ever wearing diapers and they wouldn’t know I still wore them to bed. As soon as we got settled in our new house I made mom promise that she would never mention a word about the diapers to anyone and I kept everything in our hallway closet so none of my friends would see them if they started snooping around my room.

Mom kept her promise and never said a word to anyone and she was good about keeping them out of sight but she slipped up one time. I had made good friends with Dennis who lived across the street. One day when he was over we were heading out to the garage and as we were going through the back porch there was a stack of my plastic pants and a basket full of freshly laundered diapers on the table next to mom’s washer and dryer. He looked right at them and then gave me a funny look but kept going. I was walking on egg shells around him for a couple of days after that waiting for the inevitable questions to start but he never said a word about it and if he ever told anyone I never knew about it.

One of the biggest disappointments of my life was right after the Gulf of Tonkin incident when the Vietnam war was really starting to heat up and several of my friends raised there hands and I had to stay back and watch them go. I felt like a total failure and hated myself for not being able to control my bedwetting. I met a girl not too long after that and I ended up marrying her. When it looked like it was getting serious I knew I had better tell her about my incontinence and it took a while to get up the courage to do it and I just knew she was going to dump me as soon as I did.
She sat there patiently and listened to me as I told her and when I finished she smiled and said my brother has been a bedwetter all his life so I know what you’ve gone through and it doesn’t bother me at all; we’ve been married thirty nine years now.

A few years back I was diagnosed with type II diabetes and if you’re not familiar with what it does I’ll tell you; it systematically destroys your various nervous systems and that’s why it has such a wide spread and devastating effect on a person. Because the nerve paths are no longer able to function correctly the body can’t regulate the blood pressure and circulatory patterns properly and it causes the blindness from burst blood vessels in the eyes (thankfully that isn’t a problem yet) and circulatory problems in the feet that most people are familiar with but more than that it causes coronary artery disease (I had a heart attack from it) and it really screws up the other major organs and systems in your body.






My esophagus can’t take food down properly; the nerves that control the muscles in a coordinated manner to move the food down to my stomach gets the signals all fouled up and the food gets stuck in my throat unless I take very small bites. My digestive system is a total wreck so the food that does get there isn’t processed like it should be so I have a lot of digestive problems from it. My extremities become very painful whenever I get in a temperature range that’s even slightly outside of what most people would consider to be comfortable. Right from the start it went after the nerve paths that control my bladder and I was told by the doctors that’s one of the most common systems affected by the disease so like many diabetics I’m in diapers full time. The difference between me and most diabetics however is I’m used to wearing them so it wasn’t a huge emotional hurdle to overcome like it is with most diabetics that find themselves in that situation. We had a son that thankfully wasn’t saddled with any problems of bedwetting or incontinence that I had and we never tried to hide my situation from him and he’s been aware of my using diapers from the time he was old enough to understand. It got a little awkward once when he was little and told our neighbors from next door that I wore them to bed and we made him understand that although it was nothing for me to be ashamed of we'd prefer he didn’t tell everybody.

Hi Iam older male started leaking off and on the last 2 yrs.It was hard to adjust to diapers etc. But I was at the service station getting gas had a bad accident home I went as I didn't have protection on,this was a real eye opener.This is still hard to adjust to.Good Luck