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Thread: Loneliness with incontinence

  1. #1

    Smile Loneliness with incontinence

    Hi Guys,

    I've been suffering with bedwetting and urge/overactivity during the day for almost 9 years and during that time I have gone from wearing Drynites during the day/night through to using a full sized taped pad during the night and a heavy duty pullup during the day.

    I have the most fantastic partner and close family who support me fully with my incontinence, ensure I'm comfortable and emotionally happy with the situation, however for the last 18 months or so I have an awful feeling of loneliness. Sometimes when I've had an accident in my pad, my partner will mention that I should perhaps go and change as she can smell it or has noticed a bulge- despite trying to be as observant as possible, it keeps happening.

    It's quite difficult to explain, but say for instance when I wake up in the middle of the night with a used nappy I feel so guilty and sad. Also, during the day when we can be out somewhere and I know that I've used my pad I feel incredibly subdued and almost embarrassed/guilty when I have to go and change myself.

    I've only felt like this ever since I had an incident outside a disabled toilet at a shoping centre 18 months ago. I always tend to use disabled toilets as they have bins for used pads; on this one occasion, I had quite an angry confrontation with the husband of a wheelchair bound lady who was waiting to use the toilet after me. He demanded to know what medical problem I had and to justify my reasons for using the toilet, but I'm awful in such confrontational situations and froze, stuttered a bit and ended up walking off almost in tears.

    Any advice would be appreciated; I just feel that I'm in a catch-22 situation as feeling upset tends to aggravate my problem and its bad enough already!

  2. #2


    Different people go to the bathroom in different ways for different reasons. Some go to change a pouch when they've filled it, others might go to sit for a tinkle or a poo and change a tampon while they are at it... you and I and many of us here often go to change our nappies. All of these are 100% legit. Outside of the bathroom there is a variety of possibilities too. Someone who doesn't wear a nappy might have embarrassing little leaks, while the one who does might have a bulge in her dungarees. I don't have to worry about skidmarks in underwear, others do. etc. etc. Different ways, different problems and solutions. You happen to do it your way and that's 100% legit too, disabled bathroom included.

    The chap who confronted you might well have agreed with this and his demand for justification might have had little or nothing to do with you personally. His visualisation of what constitutes a disability is probably somewhat guided by the specific person he cares for and his conflicting observations - 'This person is not like my wife, he shouldn't be taking up the disabled bathroom' could easily have overridden his recognition that it's OK to go in a nappy if you need and the disabled bathroom is the best place to change afterwards. Most people would be mortified by such an intimate question from a stranger so your reaction might not have been as adverse as you remember it. If he doesn't realise it was a faux-pas to ask, well that's a bit anti-social but it's his problem, not yours.

    In the meantime, carry on. There's a whole industry behind you, turning out all sorts of useful products and potential remedies for the leakage at source. Do what you need in the nappy, drink lots, change lots to stay fresh, be fastidious with your hygiene and there will be no reason to feel that your way of going to the bathroom is any inferior or superior to anyone else's.

  3. #3


    I don't know what the solution is, but you do need to stop feeling so self-conscious. I'm sure you've heard it before: needing a pull-up or a pad or something else really isn't any different from needing eyeglasses or contact lenses if you're having trouble seeing clearly. It's just a small additional thing you need to do to get by. That's the great thing about support boards like this. You can read about the situations others have found themselves in and ask, "what would I do if that were me?". I'm sure if a situation like at the disabled toilet happens again, you'll have a better idea of what to do and say. If you're not typically the argumentative type and if that gentleman was much, much older, it's possible the confrontation would have ended similarly, even if it was about something totally different, like a parking spot or the last box of breakfast cereal. In this case it just happened (if you'll pardon the phrase) to hit below the belt. As Paxe alluded, I would take his actions more as showing chivalry towards his wife and not really about you. Give it some time. It'll get better. I didn't become totally comfortable in my skin until probably my early 30's.

    Concerning odors and bulges, if you're getting supplies from NHS, I don't have experience with that, but have read that the quality is sometimes lacking. Unless you're wearing really tight trousers, I am surprised that anybody would notice a small bulge, nor would I think you'd need to change after every leak, unless you're feeling uncomfortable. And as long as you're staying hydrated and your pull-up/pad has an odor control feature, I wouldn't think odors would be noticeable...although women apparently have a better sense of smell than men. When I was young, we used to joke that my mother could rent herself out as a bloodhound!

    Congratulations on having a great bunch of people around you. I am one of those people who clings to the idea that a good hug can fix nearly anything, so I hope you've discussed t how you're feeling with your partner. I suspect I know the outcome.

  4. #4


    As has already been said, you have a medical issue that you are addressing with pads and/or pull ups.

    This is how I started over twenty five years ago dealing with my ever increasing leaks and accidents. Initially I was also very self-conscious and afraid someone would figure out what I was wearing underneath my pants. As the years went by and my problem worsened, I began wearing diapers 24/7. Believe it or not, I was actually less self-conscious because I quickly learned I didn't have to worry about leaks and found I was paying much less attention. I have a set schedule to change at specific times.

    The guy in the toilet was just an ass! Believe me he is an extreme exception.

  5. #5


    I know how you feel.

    Regarding the toilet incident, you are entitled to use those toilets. The person who confronted you was an ass. Nobody ever has the right to demand medical information about another person.

  6. #6


    Sometimes I can be very blunt with people. I use the disabled toilet if I need to change because there is more room. We have a radar key because my wife has some movement issues. I was given a cold hard stare by a lady waiting to use the loo one day. I just turned to her and said "not all disabilities are visible you know. I am incontinent and have to wear a nappy" You should have seen her turn bright red. I couldn't stop smiling to my self all day.

  7. #7


    good luck. shame and loneliness are hard to overcome. you don't own mean people any explanations.

  8. #8


    I completely recognise everything you have said. I was a bedwetter as a child. Occasionally in my teens and then a spinal injury aged 26 led to nightly bedwetting and daytime problems too. Been there too, including the disabled loo experience. Harangued by the wife of an elderly gentleman in a wheelchair in Tescos! I offered to show her my 'disability', though to be honest I don't view it as such, I just need the extra room and the bin!
    Don't feel guilty; you have a real medical issue that you need to manage. Like you I was/am also very self conscious about how discreet the nappies are. My NHS Trust recently changed supplier. The new nappies were not as discreet or effective and so after I raised this with them they kept me on my previous supplier. I use the TENA Slip Maxi Active fit - excellent.
    In terms of acting having to wear nappies 24/7, I don't feel properly dressed if I am not - they are just underwear after all!

  9. #9


    I can understand what you are saying. I've been in plenty of situations where I filled my diaper with pee and poop and there wasn't a damn thing I could do about it. It definitely makes you feel "small" and insignificant sometimes, which is why I think it is emotionally healthy at times to embrace being "little." That being said, imagine what your life would be like with your incon and without diapers. That would be much worse so I always say thank God for diapers.

    I struggled for years to gain full incontinence, but I always had to rush to the bathroom sometimes failing to make it. When my incon got worse in my early 20's and then much worse in my mid 30's (I'm in my late 40's now), I finally embraced diapers and the part of me that is little. I wish I had done it much sooner, but we didn't have support websites like this or even the internet in the 80's and early 90's.

    I went to a friends party a few years ago and on the way pooped my diaper. I always change in a handicap stall so I found one in a nearby grocery store. I'm in there cleaning up and this old guy (Florida is full of old people) starts banging on the stall door because I guess I was taking too long and he had to go. I was like "f*ck you man!" "Go find another bathroom, this ones taken!" I don't consider myself disabled until I need to change, then I'm disabled. It's hard enough to change yourself in a nasty public bathroom let alone one with no room to move. There are lot's of people who use disabled stalls just because they want the privacy and the extra room. I don't necessarily agree with that, but if you've got to change yourself because of your incon, then have at it and don't let anyone tell you otherwise.

  10. #10


    Quote Originally Posted by Kaliborio View Post
    I know how you feel.

    Regarding the toilet incident, you are entitled to use those toilets. The person who confronted you was an ass. Nobody ever has the right to demand medical information about another person.
    I agree with you.
    I myself have had similar experiences at public men's rooms as an older adult with Autism and Cerebral Palsy.

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