The stigma of incontinence.

[greatlake5]

Keep in mind that not all people will share their true feelings. They (as adults) may be polite about it, especially since it is an awkward thing to discuss. But back at the bar/bbq or otherwise in private, they may say something less flattering. While the stigma might be reducing somewhat as the demographic ages, it is still there. If you need proof, ask some troublemaking young people about it in the subway (for example).

How true. First, I'd never discuss something so personal, with anyone. Some abdl people here on this forum, they say they "like" to tell others that they wear diapers. These are abdl members, not purely IC. Of course we discuss IC in a private conversation. But in general, most of us are discrete. I actually like abdl people. Unless they start doing something that gives us a bad name.

IC people, at least for me, I don't have a problem to talk about IC or that I need to wear a diaper. But it has to be a personal conversation. Something like this, it's usually a medical question. At that point I'll answer the questions in a way for talking clearly and it's "a matter of fact." To be honest, I rarely get IC questions (unless I'm in a doctor's office). Most adults don't. Unless there is real question. People that like to tell people they wear a diaper, there's no reason. Unless you like telling because you love diapers.

 

[inconowl]

How true. First, I'd never discuss something so personal, with anyone. Some abdl people here on this forum, they say they "like" to tell others that they wear diapers. These are abdl members, not purely IC. Of course we discuss IC in a private conversation. But in general, most of us are discrete. I actually like abdl people. Unless they start doing something that gives us a bad name.

IC people, at least for me, I don't have a problem to talk about IC or that I need to wear a diaper. But it has to be a personal conversation. Something like this, it's usually a medical question. At that point I'll answer the questions in a way for talking clearly and it's "a matter of fact." To be honest, I rarely get IC questions (unless I'm in a doctor's office). Most adults don't. Unless there is real question. People that like to tell people they wear a diaper, there's no reason. Unless you like telling because you love diapers.

This 1000000%!!! I agree with everything you have said here as someone with medically diagnosed incontinence.
The people who know about how I manage my incontinence have been told privately by me. I’ve never felt “the urge” to tell anyone that I wear/use diapers in a personal setting unless it’s absolutely necessary.

 

[BabyHailey1977]

More power to you! And that’s why surrounding yourself with supporting family, friends, and/or pets is so important. Mean words and actions can impact you directly or indirectly whether you realize it or not. Saying it doesn’t to boost inner strength is fine but, it doesn’t make the impact harmless. IMHO.

I honestly don’t care if someone is mean to me. For one, how you react either gives them power or takes it away. One person made a negative comment so I wiggled my fingers at them and said: “and now you will lose your control”….

 

[daylight]

I honestly don’t care if someone is mean to me. For one, how you react either gives them power or takes it away. One person made a negative comment so I wiggled my fingers at them and said: “and now you will lose your control”….

I will have to disagree. Your actions and how others see you is important. Letting someone belittle you is empowering them to do it to others. They need to know it is not acceptable and is not tolerated. If you have ever been discriminated against by race, gender, or other, you will know what I mean.

Furthermore, I doubt you are so uncaring if it was in your home town; around workmates, friends and family. Your community or media presence matters. Jobs screen on social factors including media postings/accounts of family and friends. References. What you say, repost, or word of mouth can affect not just you, it affects SOs, immediate family, friends and relatives. Seems like a lot of basement bravado, macho-BS. If you truly believe that you are so grounded in your identity, why hide behind the screen name BabyHailey1977? I ask others as well. You tell yourself how thick skinned, emotionally tough, yet, yet, here you are in some forum persona rather than your actual name and picture.

 

[BabyHailey1977]

I will have to disagree. Your actions and how others see you is important. Letting someone belittle you is empowering them to do it to others. They need to know it is not acceptable and is not tolerated. If you have ever been discriminated against by race, gender, or other, you will know what I mean.

Furthermore, I doubt you are so uncaring if it was in your home town; around workmates, friends and family. Your community or media presence matters. Jobs screen on social factors including media postings/accounts of family and friends. References. What you say, repost, or word of mouth can affect not just you, it affects SOs, immediate family, friends and relatives. Seems like a lot of basement bravado, macho-BS. If you truly believe that you are so grounded in your identity, why hide behind the screen name BabyHailey1977? I ask others as well. You tell yourself how thick skinned, emotionally tough, yet, yet, here you are in some forum persona rather than your actual name and picture.

You’re joking right? You’re basing all that off the fact I have a user name. So many people know that I’m IC and wearing diapers. I don’t use a screen name for that, I use it because there are other things that I don’t want others to know.

Just because you may let your fear control you doesn’t mean that everyone else has to fall in line. There is no way me being incontinent and in diapers is going to affect my SO, my job, relationships or any other excuse you can throw at me. This so called macho BS is how I choose to live. All my friends, family, work, and so many others know. I know what made me IC and I will not hide behind it.

In the years I’ve been ic, one person was negative….one. In my experience people react in one of two ways; embarrassment or inquisitive. Fortunately my IC developed in my 40’s so I didn’t have to experience being a school age IC person.

 

[SebUK97]

You’re joking right? You’re basing all that off the fact I have a user name. So many people know that I’m IC and wearing diapers. I don’t use a screen name for that, I use it because there are other things that I don’t want others to know.

Just because you may let your fear control you doesn’t mean that everyone else has to fall in line. There is no way me being incontinent and in diapers is going to affect my SO, my job, relationships or any other excuse you can throw at me. This so called macho BS is how I choose to live. All my friends, family, work, and so many others know. I know what made me IC and I will not hide behind it.

In the years I’ve been ic, one person was negative….one. In my experience people react in one of two ways; embarrassment or inquisitive. Fortunately my IC developed in my 40’s so I didn’t have to experience being a school age IC person.

 

[SebUK97]

You’re joking right? You’re basing all that off the fact I have a user name. So many people know that I’m IC and wearing diapers. I don’t use a screen name for that, I use it because there are other things that I don’t want others to know.

Just because you may let your fear control you doesn’t mean that everyone else has to fall in line. There is no way me being incontinent and in diapers is going to affect my SO, my job, relationships or any other excuse you can throw at me. This so called macho BS is how I choose to live. All my friends, family, work, and so many others know. I know what made me IC and I will not hide behind it.

In the years I’ve been ic, one person was negative….one. In my experience people react in one of two ways; embarrassment or inquisitive. Fortunately my IC developed in my 40’s so I didn’t have to experience being a school age IC person.

There is no way me being incontinent and in diapers is going to affect my SO, my job, relationships or any other excuse you can throw at me.

 

[SebUK97]

I will have to disagree. Your actions and how others see you is important. Letting someone belittle you is empowering them to do it to others. They need to know it is not acceptable and is not tolerated. If you have ever been discriminated against by race, gender, or other, you will know what I mean.

Furthermore, I doubt you are so uncaring if it was in your home town; around workmates, friends and family. Your community or media presence matters. Jobs screen on social factors including media postings/accounts of family and friends. References. What you say, repost, or word of mouth can affect not just you, it affects SOs, immediate family, friends and relatives. Seems like a lot of basement bravado, macho-BS. If you truly believe that you are so grounded in your identity, why hide behind the screen name BabyHailey1977? I ask others as well. You tell yourself how thick skinned, emotionally tough, yet, yet, here you are in some forum persona rather than your actual name and picture.

I really don't like this kind of attitude, It's bordering on bullying! You can agree to disagree with "BabyHailey1977", without resorting to personal insults and criticism! You are effectively resorting to the very thing you claim to be against? Letting someone belittle you is empowering them to do it to others.

We should all be respectful of each other! Everyone is entitled to their own opinion, but resorting to bullying of those that you happen to disagree with, is equally repugnant!

 

[InconLifer]

I feel that so long as it's seen as embarrassing and infantilising then there will always be some stigma and it does seem that it's the one aspect of disability that isn't as discussed as others. That being said, I do feel the Changing Places campaign here in the UK has had a positive effect in highlighting the fact that many people have incontinence issues.

 

[daylight]

You’re joking right? You’re basing all that off the fact I have a user name. So many people know that I’m IC and wearing diapers. I don’t use a screen name for that, I use it because there are other things that I don’t want others to know.

I wanted to take a pause before replying, there were two statements that convoluted into one message.

First, talking with people about their behavior to others and saying it is inappropriate is a teachable moment. Not everyone will learn, and not everyone is approachable. Ignoring okay but, acting silly to what outcome?

Second, I should not have personalize the persona statement. I could have use my handle or left it blank. My apologies. It is/was a statement on the anonymity of online identity that can create a whole set of issues. One of which is encouraging behavior that otherwise should not be or inflicting pain (physical or emotional) for the sake of amusement. The juvenile or infantile lifestyle that co-exists with this forum can [does] create issues. Many interactions are informed and shared, positive, experiences though not always.

 

[Deleted member 39574]

I find nurses are more straight to the point.

Your probably right. But the last time I was in the hospital I had to explain why I wanted a diaper. The nurse told me not to worry because there was a waterproof mat on the bed. I tried to tell her it was more about my comfort than protecting the bed. Eventually she found a pullup for me but it was about the size they use for a young teen than for an adult male.

 

[NotTheAverageMan]

the stigma of incontinence and need for protection is very real for me too, I guess anyone who deals with incontinence feels that, we are definitely being looked down upon, for instance when I’m being examined in the hospital, and when I read the notes from the doctor after the visit, it always says “patient is wearing a big diaper due to incontinence“ why is it necessary to point out what diaper and the size of it (I usually wear a Tena Maxi, at such events when I’m not expecting to be able to get to a toilet in due time, being scanned and such), why not just “patient is dealing with incontinence issues, and wear appropriate protection”.

I make an effort of being as discrete as possible in every setting, whether I’m at work, with friends, or at home. I’m not at all open about my incontinence situation and how I must deal with it, and why should I?
I very quickly realized that it wouldn’t provide me with anything positive letting every one know that I have to wear diapers, that being colleagues, friends and family relatives. For obvious reasons my wife and sons knows, as does my GP and other medical staff I’m in contact with, but that’s it.
Sometimes listening to other peoples comments and joking about the topic “diapers” makes me realize, I made the right decision not to be open about this subject.
Also, in my opinion, we all have a responsibility when out and about. I always make sure I’m well protected when at friends place, I don’t want to leak on their couch or other furniture, and by well protected I mean an adequate diaper, that I know will be able to bring me through that evening, with my dignity preserved.

 

[Pino]

the notes from the doctor after the visit, it always says “patient is wearing a big diaper due to incontinence“ why is it necessary to point out what diaper and the size of it (I usually wear a Tena Maxi, at such events when I’m not expecting to be able to get to a toilet in due time, being scanned and such), why not just “patient is dealing with incontinence issues, and wear appropriate protection”.

My incontinence is written in every "doctors letter" as "Neurogenic-Detrusor-Overactivity / NDO", so "outsiders" won't read incontinence out of it, but never ever has anybody written down i am wearing a diaper. Not even a euphemism of it.
I was asked once about my wearing and something was written down on internal documents of the hospital i think.
I am really astonished about them bluntly write that down.

 

[NotTheAverageMan]

My incontinence is written in every "doctors letter" as "Neurogenic-Detrusor-Overactivity / NDO", so "outsiders" won't read incontinence out of it, but never ever has anybody written down i am wearing a diaper. Not even a euphemism of it.
I was asked once about my wearing and something was written down on internal documents of the hospital i think.
I am really astonished about them bluntly write that down.

It’s only because of my current health that I read all notes from the healthcare system. And yes, I do find it odd that they write such things, they have been aware of my OAB / urge incontinence since almost a decade, no I haven’t brought up the subject when going in for other issues. But still, why the need to write such things in the journal. Patient wears big diapers to deal with urge incontinenc………

 

[fredy552]

Well, let me 1st say Thank You All for this particular blog and ADISC in general. If you follow me and read in other blogs here in ADISC you know when I became OAB Incontinent. I am very conscious of my wearing Diapers and Plastic Pants out and about. I am Retired from the Army not a big macho type of guy but I was a career Soldier and to some, I still carry that look today at 68. So back in 2020, I got COVID pretty bad they told my wife I was pretty bad off and I may not make it. To make this short I came wearing diapers and a couple of other issues that still affect me today. I tried to ignore it and got up several times during the night and day and constantly had damp undies. I switched to Pull-Ups and as we all know those are good for occasional leaks several of which were in my chair here at home. I started wearing diapers for trips and grocery stores etc. After the leaks at home in my chair watching TV the solution was to wear Diapers and Plastic Pants 24/7 it has been 3 years and recently started working P/T driving around the state for a rent-a-car co. I do know that there are a couple of other guys that use some form of protection. My Dr. (GP) knows I am OAB Incontinent the wife knows and recently my daughter was told she is 40. I deal with my issues head-on and just hope I will not embarrass myself by leaking. But after reading this it is not a matter of not leaking it is when I will leak and embarrass myself. But people can go to Hell with those others they do not know anything of what we have gone through and hope they never do as we do know when we leak and embarrass ourselves in the Public Eye it is not something you damn sure did not want to happen in the public eye.