www.incontinentsupport.org

Hello,
So I was joking around with my wife today about her "probably telling all her friends I wet the bed", and her reply innocently enough was "oh honey. I wouldn't tell anyone that'd be embarrassing for me too."

I knew what she meant, and it was funny in context. The idea of sleeping in a bed with a bed wetter could be humorous in a middle school bully kind of way. But I thought about that for a minute and yes, that could be embarrassing for her. That was a bit hurtful to think about the emotional effect my health issues have on those closest to me.

It's not only me that has to deal with the stigma. My wife wouldn't tell people about my problems because: a) she loves me and respects my privacy, but also, b) because she wouldn't want to be asked "what's wrong with him?", or "OMG, you have to deal with that?" I imagine my kids would be too embarrassed to tell anyone they know also. Who would want to say their dad needs diapers. That's pretty sad for me to think about..

Not trying to be a downer. This is just a thought I hadn't really considered as deeply as I did today. I thought I'd share. I am blessed and grateful to have the support I have. They'd do anything for me. It sucks they should have to deal with the same kind of stigma I do. I hate that I put this on them.

_________________
Thank you kindly,
CG

Odd, but maybe it is because I have been dealing with this issue (beginning as a bed wetter as a child) for a lifetime. I have an extremely supportive and understanding wife who travels with me on my many foreign journeys to places such as China, Russia, Mongolia, England, etc you make the call. Maybe it is because I am an inspirational speaker and my mission in life at this juncture is to assist those I speak before. My wife has my absolute permission and desire for her to share with any and all who could be helped knowing that I deal with this. For instance : Two close friends basically shut themselves in and to some large degree refused to go out and more or less withdrew from life itself because of urinary accidents and NOT being willing to wear absorbent protection. My wife's mother (my mother in law) also had this issue (urinary incontinence) and I shared with her my lessons learned and products I successfully utilize. I do not advertise my situation but some of my close friends are aware of this and I also have doctors who support me as well.

I don't know where you will end up but I wish you the very best. Yes it is not easy! Yes it has its challenges! But so too does life itself. Acceptance does not mean approval. But What IS .. IS. Again best wishes on your journey.

I recently read a most touching article about disabled veterans who travel the country playing exhibition softball games. One young boy (himself) wearing a leg prosthesis was thrilled to see adults who looked like him. The photo showed him pressed against the fence just staring out at all of the grown men who, like him, were also missing arms and or parts of their legs and out playing softball. It could work out that some young person who also has incontinence issues and is terrified of anyone knowing could find out about you and it could change their life and outlook at themselves. You just never know. Again I don't advertise this but I don't hide it either. And, I've been doing this more decades maybe than you've lived so don't rush your process.

Excellent advice. The stigma will end; it is inevitable. There are so many incontinent folks, of all ages, that they constitute a huge, inviting market for manufacturers and retailers of incontinent products that capitalism alone will assure its demise. Until then, we must deal with it, and this can impact our careers, family dynamics, our community status, and our relationships with the medical community. I have had medical doctors, of all people, criticize me for wearing diapers. We need to support each other, read supportively when one of us needs to vent, learn from the experience of others, and take advantage of every sign of weakness that the stigma displays. Thank you.

Patrick: I think it would be wonderful if the stigma ended as you say is inevitable. Call me a cynic but I think it will always be with us in one form or another. Many parents will continue to disapprove of their child that cannot completely toilet train. Schoolmates will always snigger and tease. Bullies will make it a big deal. Even in university settings, it will remain embarrassing. IC may become more common place and less of a stigma but I don't believe it will go away. But it is a nice thought.

In my own family, one daughter jokes with me about it, while the other finds it embarrassing. My wife finds it embarrassing also as much as she tries to be supportive. I know she won't share it with others because she finds it embarrassing. My son doesn't say much as he probably finds it embarrassing and otherwise too busy in his life right now to care.

IC has forced me to wear a diaper and I am learning to accept that. Along the way I have also accepted that the stigma will always be there. But I refuse to be ashamed of my disability. I didn't ask for this. So if I need to talk about it with medical folks or others on a need to know basis, I do so without reserve. If I get a reaction, I let it roll off my back like a duck. I expect it. There is no surprise there.

I just find it frustrating that when people ask about your health, that I can't talk about this to avoid embarrassing family. I have confided with a couple of friends but otherwise I keep quiet about it. I'm not looking for pity but would like them to know that I do have some struggles my own to deal with. I hate secrets.

Hey guys,
These are wonderful responses. Wow! I really appreciate you all! Speaking these internal conversations I have with myself about this subject out loud here, and receiving these type of responses is something I cherish about this site. Beyond grateful to all of you!

I guess one thing I can say about "The Stigma" from my point of view is that people will either view you as defective in some way, or a freak that is into some diaper wearing fetish. Neither one of those things is a label I would want someone to give me.

That's the outside battle, and is actually less troublesome for me because Sticks and Stones right? People will always form an opinion on you no matter what information they have about you. That being said I would never want there to be any question of my abilities in my profession. It will remain of the highest secrecy for me.

The internal battle with the stigma is another thing. As someone who was formerly very strong and capable, it's tough to see myself as "abnormal", or having a "weakness".

These are all things my loved ones deal with, with me. Their acceptance of me, and loyalty, is comforting, and is appreciated more than they'll ever know. For me, considering their experience is self awareness. It's not for me to feel guilty about. None of us chose the problem, but they choose to stick by me, and help me, and I should acknowledge that.

Thanks,

_________________
Thank you kindly,
CG

That internal battle. Yes, I can very much relate to these feelings. Especially the "abnormal" thing. Most of the time I just accept my situation and continue living and working as if little has changed. But every once in a quiet moment, I get this nagging feeling like "am I some kind of pervert?" It's then I start feeling very isolated because I'm so different from everyone else around me.

Do you ever work harder to be useful/helpful because of your current disability? Sometimes I unconsciously feel that I need to make up for wearing a diaper. It's silly, but it helps to quiet that internal conversation.

Not really sure what advice to give you on your comment. But to answer your question: I don't really feel a need to work harder than others simply based on being incontinent. I have a challenge that makes the status quo more difficult for me, but I don't think I need to overcompensate for it. I don't feel guilty for having to wear diapers.

My point was, that I AM normal despite my condition. But due to mainstream understanding of incontinence I could be perceived as "abnormal." (Notice I put that in quotes.) Being perceived as abnormal can have consequences. Jobs, relationships, etc.. Separate from that is my own self esteem. Thinking of myself as different, or "defective" (Also in quotes) is something that is can be painful.

_________________
Thank you kindly,
CG

Yes, that is understood. I only meant that sometimes with the stigma that we all fight, we might sometimes unconsciously do things to compensate. Not that they are necessary or expected.

When strangers and passers-by see me, the way I walk grabs their attention. On rare occasions I've had folks reach out to steady me. That can be exasperating and humiliating; however, nobody notices that my midsection is a little larger than maybe it should be. I have been incontinent for so many years that diapers have become my underwear. And the brain injury which contributes to my gait happened when I was eleven; the inner ear disease is more recent, though it began decades ago. My challenge is to explain my situation accurately to folks who may need it, without challenging the incontinence stigma, or burdening them with detail that would leave them thinking that I'm a hypochondriac. It is a complex challenge that I do not always manage successfully. Altogether this make me grateful for the folks on this site.

Over the last four years or so, I’ve had times when my hands tremble somewhat, usually when I’m upset or exhausted. I stumble too for no particular reason, again when I’m stressed. I was told what to expect over time but also that exercise is a good way to avoid or postpone some of the symptoms. I was also told that MS is quite personalized in that each has varying degrees and types of symptoms. If it weren’t for my birth defect to the sphincter and nerves, I wonder to what degree my leakage would be due to MS. Overall, I consider myself to be extremely fortunate in that I live a happy and full life with only minor inconveniences (leakage).