Dilemma, reaching out to support vs wanting to keep privacy

[sociologygeek]

Hey all,

Just thought Id pose a question to the group. I came across a disability website.. and also came across a post about a mom whose 9 year old son struggles with incontinence due to cerebral palsy. the content of the post had to do with buying diapers.. and another person saw them and said "Oh i know your life!" And she mused about how this woman did NOT know her life.. that she was not buying diapers for a baby, but rather her 9 year old son. I wanted to reach out to her in the comment section, and share my own struggles..and let her know that she and her son are not aloine..but the only problem was that it was set up so that I could only post a comment through my Facebook... which listed my first and last name and where I worked...and had my picture. I went back and forth between putting it up..then taking the commment down.. saying, screw it, I don't care who knows and i want to help this person..to finally taking it down because i realized that for all I know people I work with at walmart might read that and read my name and then they would know about my incontience.. I lose anonymity. Yes, I am part of a FB incontince group, but its a SECRET group. No one except group members can find the group or see posts..

On the one hand, I want to raise awareness and fight stigma and that means disclosing my incontinence to some selectively, but on the other hand, I guess I don't want the whole world to know?? It's an interesting dilemma. Anyway I need to go to work.. ill post more later.


Peace out!

Rob

[msshendo]

Rob, you hit a nerve here. Sure we all feel free to share in this environment and that helps us cope with our issues. But with that comes a certain expectation of privacy. We will share with people outside of here if and when we feel comfortable doing so. To have all of our comments her posted publicly on Facebook or any other social media site is a frightning thought. We assume a level of privacy here because of the user names are not our real names and we don't have pictures of ourselves all over the place. But this is still the internet. I never assume any privacy on the internet. That's just me.

[sociologygeek]

Yeah, it is a frighening thought. That's why I agree that a facebook page for this site is probably not the best idea..unless its a secret group. I like the FB group that I am a part of, but i realize that it's not everyone's cup of tea. The thing I like about it the most is being able to live chat one on one with fellow sufferers and vent and share expereinces..I miss having the live chat on this site...

Just in case you are implying that I or somene else would put posts found on here on FB, I would never do so without explicit permission from the poster..or maybe I misconstrued your meaning.

I think the heart of the dilemma is this... society says that peeing in your pants and wearing proteciton isn't normal; you ought to have control of your bladder. Parents use the line of "oh be a big boy and use the potty" without knowing that their comments may be hurtful to an incontient individual who just happens to be listening. Or, my cousin and her husband were visiting, and she made a comment like "oh i would totally wear adult diapers for conviennce" or something along those lines...of course not having a CLUE that an incontinent individual, namely ME, was sitting in the room and I had just fought long and hard to get out of diapers and wear regular underwear, only to ultimately lose that battle again.

But, heres the rub.. how else would you motivate typical children to potty train? Here's a post that touches on this: http://takeastandforincontinence.blogsp ... ffend.html

On the one hand, I can definetly see where there is merit in eliminating in the toilet as being socially acceptable has its merit. You don't give off an odor, and your skin doesnt break down etc. That should be the motivating factor behind toilet training, not being able to wear "big boy" underwear. But, the reality is for millions of us, due to various cirumstances, we find that we have lost control. There are of course multiple ways of managing incontience, but there is one that its shied away from because it has an infantile image. Yet this method is probably in many ways the easiest and practical way to manage and go on with your life business as usual. I think for me, personally, I have gotten over diaper stimga, to the point of not really caring who sees my diapers. I realized that when the other day I found out someone was in my apartment to do someting with hte cabel..the maintenance people. I was actually worried more about my floor being messy than the fact that I had a sepackage of Abena sitting on my printer in full view. Because, i realized that I live in a senior housing high rise apartment, and they had probably seen more than one apartment where the resident was incontinent and had protection around.

What boggles my mind is that diaper stigma keeps children from having dry pants.. instead they consider bringing a change of clothes acceptable. Wouldn't it jsut be better in many cases jsut to wear like a pullup? Of course, that is up to the individual child and parent, but I think we need to mitigate stigma in order for that option to be mentally accessible and acceptable. I for one would MUCH rather wear an adult diaper than to carry multiple changes of underwear, which is what I had to do when my incontinence recurred out of the blue at work last May. I was way too embarassed to buy protefction during my lunch break, because i knew the cashiers who work on my shift. Heck, I knew most of the people on the shift. So, i had no choice but to bring lots of underwear and change them on my break. Needless to say, that was uncofortable. I cringe at the thought of children and adults who are incontinent not wearing proteciton and instead deal with wet clothing and underwear. The diaper primer touches this in chapter 2.


Why can't we see diapers as a pratcial option for anyone who has difficulty controlling their bladder and bowel? Why does there have to be such a stigma? I'm sure there have been incontinent people of all ages from time in memorial in the past.. how did they cope? When exactly did it become a social norm to stigmatize anyone who needs a diaper past the age of 3?

Peace out!

Rob

[msshendo]

Just in case you are implying that I or somene else would put posts found on here on FB, I would never do so without explicit permission from the poster..or maybe I misconstrued your meaning.

That is not at all what I meant. I never think that you or anyone else here would take anything said (written) here and post it somewhere else. What makes this site work is the expectation of privacy and confidentiality coupled with support from others who are dealing with the same thing. But thanks for checking to make sure it wasn't taken out of context.

[MSUSpartan]

As a parent of child of potty training age, it's a tightrope walk. Two year olds are testing the world and their abilities constantly. Daily I watch my son try the same tasks over and over, and when he gets something new he's elated. He grabs you and shakes you and claps his hands for himself. Toddlers want to, for the most part, emulate adult activity, but they do it on their own terms. "Like a big boy", is a powerful motivating tool and negotiating tactic.

I've avoid doing the guilt potty training thing, but it is helpful to model the behavior I want as the grown up thing.

[Noe]

Thanks for raising this question. I am a 37 year old male, and a member of a Roman Catholic, intentional community in the United States. One of my jobs here is to help take care of an elderly priest. He is very lovable and it is grace to work with him. A couple of weeks ago, while picking up some prescriptions for him at a local pharmacy, I realized that he was out of pull-ups, and added some to my cart. When I reached the front of the line, the cashier asked lackadaisically, "Will that be all?" I said it would not, and nonchalantly hoisted a pack of whatever the local brand was onto the counter. He was simply aghast. Had no idea how to respond. Had I proposed to purchase a large stack of firearms and ammunition, I doubt I could have shocked him more. He mumbled and fumbled his way through the rest of the transaction, shoved all my purchases into an opaque bag, and sent me tersely on my way.

To some extent, I see an element of Siddhartha in his response. He was young, but more than that he was clearly naive about the realities of physical decay, realities that affect 100% of us, in some way or another. Based on his response that day, I can easily imagine him making fun of the store's stockpile of incontinence products. "Who is all that for?" I can imagine him asking. I confess to having felt a little annoyed with him. There was a long line that day. I waited in it for ten minutes with my purchases in full view. I felt no embarrassment until I found myself confronted by the clerk's embarrassment.

For me, the examination of conscience is How did I respond to his embarrassment? Why did I have the reaction I did? Am I ashamed of my friend's health issues? Do I think there is something wrong with him? Am I uncomfortable with this association with the world of ill-health? Did I worry that he thought I was purchasing them for myself? (A possibility, since I have my own issues in this area).

I conclude that it just doesn't matter. We cannot go through our lives pretending to be something or someone we are not, or pretending that life is something that it is not. People whose expectations about the human body were formed by the culture of American celebrity worship have some reality checks in their future. Those of us who have already learned hard lessons have a duty to respond patiently and charitably. At least that's how I feel.

[happyindprs]

I never liked shopping in public for my diapers, not so much for the clerks but how embarrassed it made me feel. I found it much more comforting picking up my stuff at medical supply stores as at least some of the people there were medically trained. But nothing can beat ordering on line. I buy by the case and a fresh supply comes direct to my house every month.

I can't say I ever had a bad encounter with a clerk though. However I do remember my heart practically jumping out of my chest just picking up a package of diapers. I felt I was beat red and everyone knew it. I dealt with the guilt and shame I felt and wallowed in my self pity for more years than I care to admit.

Call it an epiphany or just plain fed up but I learned to accept myelf and my condition and get on with my life. Incontinence is just my cross to bear, it's part of me but it doesn't define me.

[Puffy Pants]

Very well spoken Noe, and welcome to the group and your first post! Glad to have you here, and chime into whatever topics you feel you have something to say about, lots to read here! Puffy

Thanks for raising this question. I am a 37 year old male, and a member of a Roman Catholic, intentional community in the United States. One of my jobs here is to help take care of an elderly priest. He is very lovable and it is grace to work with him. A couple of weeks ago, while picking up some prescriptions for him at a local pharmacy, I realized that he was out of pull-ups, and added some to my cart. When I reached the front of the line, the cashier asked lackadaisically, "Will that be all?" I said it would not, and nonchalantly hoisted a pack of whatever the local brand was onto the counter. He was simply aghast. Had no idea how to respond. Had I proposed to purchase a large stack of firearms and ammunition, I doubt I could have shocked him more. He mumbled and fumbled his way through the rest of the transaction, shoved all my purchases into an opaque bag, and sent me tersely on my way.

To some extent, I see an element of Siddhartha in his response. He was young, but more than that he was clearly naive about the realities of physical decay, realities that affect 100% of us, in some way or another. Based on his response that day, I can easily imagine him making fun of the store's stockpile of incontinence products. "Who is all that for?" I can imagine him asking. I confess to having felt a little annoyed with him. There was a long line that day. I waited in it for ten minutes with my purchases in full view. I felt no embarrassment until I found myself confronted by the clerk's embarrassment.

For me, the examination of conscience is How did I respond to his embarrassment? Why did I have the reaction I did? Am I ashamed of my friend's health issues? Do I think there is something wrong with him? Am I uncomfortable with this association with the world of ill-health? Did I worry that he thought I was purchasing them for myself? (A possibility, since I have my own issues in this area).

I conclude that it just doesn't matter. We cannot go through our lives pretending to be something or someone we are not, or pretending that life is something that it is not. People whose expectations about the human body were formed by the culture of American celebrity worship have some reality checks in their future. Those of us who have already learned hard lessons have a duty to respond patiently and charitably. At least that's how I feel.