www.incontinentsupport.org

Very well said Haperlee. Funny part I find that once I let my hair down so to speak I started to have have fun with my condition from time to time. For instance wearing plastic rumba pants of different colors or other striped or colored pants. Also did you ever notice that there are some diapers that just make you feel good when you put them on. To be honest I think for many of us we get a feeling of security from our protection. Now saying this I have to wonder am I bordering on being a DL
..........................Sandy

Sandy, You're not DL. Not from your posts anyway. But you have hit a nail on the head. We either accept our condition or lock ourselves away in a cellar. Part of accepting it I believe is being able to laugh at certain situations - while other situations can embarass or anger us. When we can laugh at or accept the down times we cross a line. After we cross that line, in some respects we would seem to be a DL. As you said,"Comfort/security/fun" with what we have to deal with and wear. I totaly (i think) understand your point. But, at times, even with the best attitude it still stings and trying to "let your hair down" can make one feel like you have gone DL. It sure would be easier if in fact you were. Damn it is all confusing. It also helps if you are with someone in a good relationship that makes it all feel "better" - I avoid the word "normal" because how dose one define "normal" - I can't. Slowly I feel myself approaching your same feeling, if you have to deal with wearing diapers - DEAL WITH IT! Colors, style, type - a rose by anyother name still smells as sweet. My 10 cents woths. Papa

Honestly there is nothing wrong with enjoying diapers some. Why go through life miserable when you can spice things up a bit?

Now I'm not going to dress up like an infant or drink from a bottle or anything. But putting on something fancy or even a bit juvenile is fine at times... as long as your idea of fun does not involve showing your padded rear end off to innocent bystanders.

It's all about playing the hand you are dealt to the best of your ability. You can laugh and joke and have a good time, or you can mope and gripe and be generally grumpy. I'll gladly take the former.

_________________
~~PuddleGuy

It seems everyone is on the same plane with this issue, and take the time to digest those situations that bring controversy. There is a feeling that I have had for a long time that many AB/DL's are envious of those that are incontinent and their lifestyle, in some twisted way. I don't mean that in a negative sense, but only a trained psychologist or psychiatrist could put an understanding of why. Considering that, many of the questions put to me were legitimate, and not meant to cause any emotional harm to me, but I am wary when the discussions remain on a personal level, and involve a member of my family. Having said this, even if I am aware that someone is not medically incontinent, I'll not turn away, unless the need is there for me if I feel exploited.

As tough as this life can be, a large part of where I am today is because of my nature to laugh. I've had my share of embarassments, and they were not funny then, but they are now. While most do not find incontinence protection sexy or provacative, I can say that I look for protection that is comfortable and appealing to my eye. Aside from my wife, no one knows what color my plastic pants are, or what kind of diaper I have on. I do care what I look like in front of her, and that means under my street clothes and what I wear outside on a day to day basis. Personally, I do not consider anything about this to be infantile, and I don't think I could feel entirely at ease with anything that projected being infantile.

At the same time, there is nothing wrong between two consenting adults to have the fun that was mentioned earlier. Sandy mentioned rumba pants, and there is nothing wrong with that either, and if I were female that could be something I would like to do in order to appease my mate.

So, IMO, the bottom line is you, and how good you feel, and what makes you feel good. For me, even though I'm 59 I am as fit as a 30 year old, I'm confident and know what I want out of this life, and I leak.......sometimes bad.....really bad LOL I did not feel good 30 years ago, but incontinence protection took a giant step forward. If you find a diaper or plastic pants, or anything related to be appealing for you, get it. Look at it as a confidence booster. Most of this newer stuff is relatively comfortable too.

I'm learning a lot from this Board, and most everything is a learning experience, and you guys and girls have given me the opportunity to re-think day to day hints in managing. I'm a firm beleiver in the Suprima pants, but someone mentioned in other posts different alternatives. Seeing pictures of products is one thing, but getting the comments from the users seals up the notions to try or not.

Thanks everyone. I'd better get back to work, "real work"

_________________
HarperLee

I'm new to the forum, and joining this particular discussion late so I hope that's ok.

Quick background: I've been disabled and using a wheelchair for almost 17 years and primarily using diapers to manage incontinence for about as long.
I think I've adapted well overall, but much of the angst and frustration about my situation isn't because I'm still bitter about my limitations, it's the odd conflicts I've run into over the years because some people can't accept someone in a wheelchair who a)is well adjusted for the most part b) actually does what they want despite their disability, c) doesn't act in a stereotypical manner in regards to their situation, and d) manages secondary issues like incontinence *their* way rather than going along with "social rules" about what's the "correct" way to deal with such problems. And some people get offended when they see someone in a wheelchair and discover that some people (like me) are disabled because of gradual problems rather than the "accepted" specific spinal injuries or specific congenital conditions. My condition is orthopedic- over many years there was unforeseen deterioration in my lower back caused by scoliosis and unforeseen delayed aftereffects of various spinal surgeries when I was younger that by the time I was 23 walking became painful and close to impossible.

anyway-

The story about the man in Florida conning the woman into taking care of him by faking developmental disability struck a frightening nerve with me. Why? Because I think I was accused of doing something similar during the early part of my disability, and to a lesser extent later on when posting on a couple of online disability forums.

The short version of it is that I was attending classes at a local college while I was still in the early stages of dealing with my situation, including having to adjust to using diapers to deal with incontinence. I confided to a counselor at the college's disability support office about that and how hard it was to change during the day on campus, and she told me it wasn't a problem, that the nurses and attendants at the college's health center would be willing to help, since aside from being sort of the "school nurse" for the college, they also helped with the disabled students, including personal care if needed.

I was assured by the health center staff that it was ok for me to get that help, and that went on for several months, but during that time I was figuring out how to do more on my own- like pacing myself so that I had the energy to handle things like changing. But they were always ready to help on those days that I might have needed it.

But after several months, ironically during a time where I really had been getting less assistance, I got accused of faking my disability and taking advantage of people. The way it was explained to me was that it was felt that I had somehow gotten ahold of a wheelchair to use just to get attention. The personal care I had received was one thing that kept being brought up, but beyond that, I was told that I had really upset the students who were "really disabled" just by being around them. I was still in a deep depression about my condition, so I really didn't have the energy to really defend myself beyond trying to find out where they got that idea in the first place, but I was never given a real answer, and just felt so bad about having unknowingly caused everyone so much trouble. On one hand I know I did nothing wrong, but on the other hand was I supposed to automatically know that I wasn't supposed to get the help I was getting?

I kept attending classes but was no longer welcome in the health center or the support office. It was hinted that they were going to pursue a fraud charge but that never happened, and I never was able to find out what really happened, but I felt truly horrible about the whole thing for a very long time.

Later on I had the experience of having a home health aide accuse me of sexual harassment merely because she found out that I used diapers and help with changing was going to be part of her job along with other personal care, and only worked with me one day, but came back a week later to lecture me about my "inappropriate behavior" when it turned out that she either wasn't told the whole story about what the job was all about or didn't read everything about the job when she was applying for it. The case worker was really adamant that I had done something wrong and only backed off of the harassment charge when the supervisor from the home health agency insisted that it really was a misunderstanding and nothing more. If I didn't know any better I think the case worker was disappointed!

For the most part later on I never had any problems with other home health aides, but just a few years ago I had one for a few months that on her first day working with me told me about how inappropriate her previous client had been towards her, and kept telling me that so much that I was intimidated into letting her not do much beyond the housecleaning.

I've gotten kicked off a couple of online disability forums when my credibility was questioned- based on what I posted about my situation not mentioning certain aspects of disability other people deal with- basically accused of lying because I talked about other disability issues and the absence of stories about self cathing or managing a foley. No self cathing or foley? Means you're cheating. On another forum I asked what I thought were legitimate questions about being in a wheelchair and managing incontinence, and had some very angry responses because I admitted to using diapers and wasn't enthusiastic about cathing or the prospect of a foley. I was called a "weirdo" and had no further credibility with that group all because I mentioned diapers without expressing the required righteous indignation about them even being an option.

Pardon the length of this posting- but my point is: If someone with a very real disability can be accused of faking or accused of having some weird obsession even when their diaper use really is a legitimate medical need, how was this person in Florida able to pull his scam? The bottle feeding really should have been a red flag, beyond the (fake) brother being evasive.

What the guy did was just plain disgusting, and I'm sorry if I sound harsh or self-righteous. But I wonder if part of the woman being duped is the result of what I've noticed over the past several years where people in general seem much more accepting of developmental disabilities and cognitive disorders than they are of more visible physical disabilities. At the most the woman was perhaps naive, but would there have been more scrutiny if the man had claimed to be physically impaired?

I'm also a little paranoid based on my past experiences and things like this Florida case- like many of you on this forum, the fear that the AB/DL crowd makes people thing anyone using diapers, even for a real medical problem, are sickos. I looked back at the past negative experiences after I learned about AB/DLs and wondered if the people who thought I had duped them got the mistaken idea that I was AB/DL because I opted for diapers instead of cathing or a foley, or the less-effective but more male specific solutions. I've encountered so-called healthcare professionals that wouldn't bother to hide their contempt when they found out I used diapers- people in the rehab or physical therapy field, for example, who wouldn't shut up about me "needing" to have a foley or do self-cathing because "everyone else has to". I can't help but think that perhaps they too automatically assume some "weird" motive behind someone who really is incontinent opting for diapers.

More recently I've been seeing urologists that have been very helpful and encourage their patients to try different things and go with what works for them, so I've been feeling a little better about my situation but at the same time I still have that nagging feeling that at some point I'll again have to deal with being made to feel like there's something unsavory about how I deal with my condition because I do things my way.

again, my apologize for the length and the rambling- a lot to say, and I've got the adult version of ADHD so my brain always wants to do several things at once

I look forward to participating in this forum more

Hello Simon and welcome to the forum.

I think that all of us have had to deal with people thinking that we are just faking it, even some doctors. At times I just want to hit them with my cane hehe. Lots of us with incontinence also have some other disability that we have to deal with on a daily bases, and not all of them are easily seen but just as hard to deal with.

I personally dont care if a person is an ab/dl or not, or what people wear under their pants, or what happens between two consenting adults, as long as it doesnt involve kids or trys to fake the medical system or the community like that guy did. Thats taking a fantasy way too far and makes it hard on us with real disabilities.

hanks for the welcome

"I think that all of us have had to deal with people thinking that we are just faking it, even some doctors. At times I just want to hit them with my cane hehe."

That's something that's never made any sense- the people who should know better (doctors and others in the healthcare field) are sometimes the ones who turn out to be the most ignorant about disability issues.

And it's been my experience that a lot of discrimination persons with disabilities have to deal with isn't from the general public but from within the disability community. Think of it as one big high school clique with the "cool people" and people in support roles enforcing social rules about disabilities. Looking at it that way, it doesn't seem very farfetched that people with real disabilities get excluded because their disability isn't one of the "socially accepted" ones or else they're not "acting" the pre-determined social role of a handicapped person. Just like in high school the geeky kids get hassled, in the disability community the geeky disabled persons get hassled because their interests are more "intellectual" (or just plain more fun!) instead of making "being" handicapped their whole existence.


I've seen people fawning over persons with one type of disability only to turn around and be really snarky and hostile when having to be around people with different types of disabilities. I recall many times at the college where the student helpers seemed to be expecting to exclusively be assisting only the macho guys or the pretty girls wheeling around, so they were always in a bad mood when they had to give one of the "average" disabled students a push to class. More recently I've had to deal with my city's paratransit service making the passengers with physical disabilities ride for 2-3 hours while those with mental disabilities are taken straight to their destinations. Not questioning anyone's right to use the service, but if it's a "shared ride" system then either give everyone better service, or share the inconvenience!

What I find aggravating overall is the lack of real advocacy for the higher-functioning disabled persons- basically it sometimes looks like those who are disabled but are doing things that "normal" people do get penalized in ways like their condition not being "recognized"- not called fake, but just not accepted as a "real" disability, or accused of cheating or mocking the community, or having ADA quoted to them to *justify* the lack of wheelchair access they've dared to call someone out on.

And bringing the focus back to incontinence, we need more support for *all* methods of dealing with it, and acceptance of people doing what works for them, based soley medical considerations and what's applicable to someone's situation instead of having quick fixes or things that don't work pushed on us because "everyone else has to".

" Lots of us with incontinence also have some other disability that we have to deal with on a daily bases, and not all of them are easily seen but just as hard to deal with. "

The weird thing about disabilities being obvious or not is that many times the person who looks healthy and jogs into the store after parking in a handicap spot gets away with it while someone parking there and unloading very obvious mobility aids gets the dirty looks from passers-by. I've lost track of the times I've ridden with friends and we park, I hang my parking tag on the mirror, and my friend who drove is helping me get my manual wheelchair unloaded and assembled- and someone walks by looking very disgusted!


"I personally dont care if a person is an ab/dl or not, or what people wear under their pants, or what happens between two consenting adults, as long as it doesnt involve kids or trys to fake the medical system or the community like that guy did. Thats taking a fantasy way too far and makes it hard on us with real disabilities."

For the most part I try to have the same attitude- people's private lives are just that, and if they're not hurting anyone, I'm not going to say anything. But it's hard when so many AB/DLs are being obnoxious or bringing an unsavory element into legitimate incontinence discussions. I recall when I first got online back in '97 I kept coming across AB/DL sites when typing in "incontinence support" into search engines, or those sites mixed in with legit medical sites selling incontinence supplies- really felt dirty at times! I went onto one forum that turned out to be an AB/DL forum that was being "advertised" as an incontinence support site.

The flip side of that was a genuine incontinence site that did an excellent job of keeping the AB/DLs from hijacking the forum there, but at the same time the site's owner would use the AB/DL postings that got through as an example of why diapers were the wrong choice for incontinence management, and as a result, the actual incontinent people saying anything positive about diapers got indirectly painted with that same brush, so to speak.

Even now I see sites selling incontinence supplies that I can't help but think look a little suspicious.

I think nowadays I get a little paranoid about it because I'm getting out more and meeting people, and I start thinking about the prospect of a future relationship with someone, but in the back of my mind is the worry that I'll be seen as trying to trick a would-be girlfriend into taking care of me. I've been around a few people with real disabilities who were totally shameless in their playing up of their conditions to get attention, and I dread the prospect of being seen as someone like that.

And just curious thought on my part, but I find it interesting that the AB/DLs that get caught either "infiltrating" legit incontinence sites or get into major trouble like the person in FLorida seem to be exclusively men. Are there women who are AB/DLs but just behave themselves and stay off the radar?

I know, I talk too much

Simon01,

I join Schoppy in welcoming to the forum. Your two post have said a lot. I understand your frustrations.

I personally think male AB/DL's like to show off more than the few AB/DL's I've read about. I personally do not personally know anybody in that crowd. In fact, I do not know any body personally who is incontinent like myself.
I'm glad I have this forum to talk to people about my problem other than my wife.
I'm glad to see your interest in posting. Don't worry about being long winded. It's good to get it off your chest every once in a while. Again, welcome to the forum!! ............Paul Martin

thanks!


"I personally think male AB/DL's like to show off more than the few AB/DL's I've read about. I personally do not personally know anybody in that crowd."

I've picked up on the acceptability of diapers to manage incontinence being divided along gender lines, where there seems to be less of a stigma about it when women choose them for their condition compared with the criticism and sometimes hostile reactions men encounter, so I wonder if in some circles the red flags are already going up when a man joins the discussion and talks about incontinence supplies, regardless of his actual motives. I've seen a few discussions where men mentioning adult diapers even in a purely medical context would get chided for not singing the praises of catheters, collection bags, or non-diaper incontinence products, while no one caught the postings from a woman who might have actually been saying something inappropriate, but I totally agree the AB/DL men seem to show off more. But it irks me a little that because of that, a guy with a real medical problem runs the risk of trouble if they merely join a discussion and open up- guilty of "too much information", sure, but simply being "too knowledgeable" about incontinence and methods of dealing with it shouldn't been seen as suspicious behavior when someone is being honest about their own situation. The people who *do* have ulterior motives are usually going to get themselves into trouble on their own, so there shouldn't be a need to automatically distrust anyone just for being new to a forum. What had really creeped me out is when one of the real weirdos gets found out and acts either suprised they're not welcome, or else displays righteous indignation at being shown the door-either arrogance or a deeper mental problem where they actually can't process the fact that their behavior is offensive.

What I've had a really hard time understanding are the legit medical discussions that never drift into AB/DL territory but still end up becoming a showcase of juvenile humor- not humor to make things less unpleasant- I'm talking about disability chats where you can't have a frank, mature discussion about things but all sorts of juvenile and just plain disgusting topics get thrown around- elementary school bathroom humor with some medical and disability jargon thrown in to make it seem "respectable".

" In fact, I do not know any body personally who is incontinent like myself. "

I think there are more incontinent people out there than we realize and if a way could be found to make it more acceptable to actually find support and talk about it I think we'd meet more people like us. I joined a disability support group many years ago and went to a few of their social gatherings, only to be disappointed when it turned out that the group's "MO" wasn't to get disabled persons to socialize and talk shop and *support* each other, but rather "let's all hang out and pretend we're not handicapped", so it was inevitable that I got a stern "talking to" from one of the organizers about my showing up and actually trying to *meet* other disabled persons.

On that note, and perhaps it relates to the automatic suspicion I've seen sometimes in incontinence discussions, is that in the disability community there is an unsavory element as well- people with an odd obsession with disabilities and disabled persons, some going as far as faking a disability for attention rather than the usual benefits or insurance fraud we hear about in the media from time to time, and others who actually pursue disabled persons, and those people as well has gotten into real disability chats and caused problems similar to the AB/DLs getting into incontinence chats.
The fakers I'm not sure about- it's hard for someone with a real disability to get mobility aids without a lot of paperwork and approval on the financial side of it if they don't have the cash- and even if you buy a wheelchair totally out of your own pocket, you can't just buy one without medical approval from a doctor. Not saying the fakers don't exist but I'm curious how someone faking a mobility problem would be able to get the higher-end wheelchairs some have claimed to have done.

The people fixating on disabled persons though unfortunately are real- while I have no proof I've actually encountered one of them I've seen some odd behavior towards me on the part of some people over the years that makes me wonder what was really going- someone paying too much attention to me when there are a lot of other people present, or asking questions and looking a bit confused when I'm steering the discussion away from my condition or my wheelchair. Or when asked about my situation and they seem really bothered that my "story" isn't full of angst and drama and details of a catastrophic accident or me lamenting lost abilities. Some people don't like it I guess when I guy in a wheelchair is well adjusted and wants to talk about geeky sci-fi things instead of acting macho about "overcoming" their limitations.

"I'm glad I have this forum to talk to people about my problem other than my wife. "

This is what I mean- not just with incontinence but with disabilities and other health issues in general- we really need to have a more positive face on things, like showing that people with those condition also can be in a relationship or marriage. There are a lot of people who have had been sold sort of an unofficial "rule" that if you're disabled or have some other ongoing health issue you need to accept being alone, and I've seen many times where just discussing the idea of disability and relationships is discouraged.

What impressed me about this forum was the atmosphere- people simply being frank about what works for them in dealing with incontinence and no one pushing any "part line" about the "correct" way to deal with it.

I think the long-windedness will slowly go away as I get used to posting here. Sometimes when you finally get to be around like minded people you tend to make up for not being able to talk about things by trying to express several things at once.

again, thanks for the welcome.