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I've been doing a lot of thinking since my ileostomy about shame. Many new ostomates feel a great deal of shame, involving changes in body image and the ostomy bag itself. They're worried that the bag will show under clothes and people will be able to tell that they wear a bag, they're fearful that they'll smell bad, and they feel ashamed that they can't empty their bowels in the "normal" way. I feel fortunate that I haven't had any of these concerns - I don't care if someone notices my bag, and if they do I'm happy to discuss my ileostomy and the health conditions that caused me to need it.
These feelings are not all that different from the feelings of shame that many of us have surrounding our incontinence and the products that we use to manage it. What's interesting to me is that, despite my lack of shame about my ostomy, I still have a lot of shame about my incontinence. I worry that people will notice that I have to wear protection, I'm fearful that I'll smell like pee, and I feel ashamed that I can't reliably control my bladder.
Why the difference? I have no idea. I think a lot of it comes down to the products used to manage each of the conditions. Colostomy bags are very occasionally the butt of jokes, but I suspect that few people actually know what they are or who has to wear them. Most people don't think of them at all. On the other hand, an undergarment suitable for heavy incontinence looks, feels, and works like a diaper, and most people know what a diaper is and what it's for. Adult diapers are often the punch line of jokes about those who are old and infirm, which are themselves stigmatized conditions in our society.
I've been incontinent long enough that I rarely think much about what I'm wearing - except when I'm worried that someone might see it or otherwise realize that I'm wearing it. Then the shame kicks in. I was at a wound care appointment the other day, and I was lying there half naked with two nurses and a paramedic spreading my buttocks, working on the incision where my anus used to be, and taking pictures of it so they could track the healing process. That didn't bother me in the least, but when one of then needed to move my clothes and uncovered the brief that I'd carefully hidden under my pants when I undressed, I was extremely embarrassed.
I don't know why it's so hard to let go of the shame around a garment used to manage incontinence, but after years of managing my incontinence, it's still there. If we're ever going to improve the stigma around incontinence, we have to get rid of the shame, yet at least for me, it's still there after years of telling myself that it's not a big deal, that it's not a personal failing, and that it's a common problem that lots of people have to manage.
What are other people's thoughts on this? How have some of you overcome the shame associated with incontinence?
(For those who aren't familiar with them, an ostomy is a surgically-created opening in the abdomen for waste to exit. Mine is an ileostomy, which in my case means that they removed my colon, rectum, and anus, stitched up the opening where my anus had been, and poked the cut end of my small intestine through a hole above and to the right of my belly button. It got folded back on itself and stitched down to the skin, leaving a protruding red bit of intestine where my feces can exit. I wear a special bag taped over the opening to catch the output, and I empty it several times a day as it gets full. If you want more details or have questions, please feel free to DM me, so we don't clutter up the forum with unrelated discussions.)
These feelings are not all that different from the feelings of shame that many of us have surrounding our incontinence and the products that we use to manage it. What's interesting to me is that, despite my lack of shame about my ostomy, I still have a lot of shame about my incontinence. I worry that people will notice that I have to wear protection, I'm fearful that I'll smell like pee, and I feel ashamed that I can't reliably control my bladder.
Why the difference? I have no idea. I think a lot of it comes down to the products used to manage each of the conditions. Colostomy bags are very occasionally the butt of jokes, but I suspect that few people actually know what they are or who has to wear them. Most people don't think of them at all. On the other hand, an undergarment suitable for heavy incontinence looks, feels, and works like a diaper, and most people know what a diaper is and what it's for. Adult diapers are often the punch line of jokes about those who are old and infirm, which are themselves stigmatized conditions in our society.
I've been incontinent long enough that I rarely think much about what I'm wearing - except when I'm worried that someone might see it or otherwise realize that I'm wearing it. Then the shame kicks in. I was at a wound care appointment the other day, and I was lying there half naked with two nurses and a paramedic spreading my buttocks, working on the incision where my anus used to be, and taking pictures of it so they could track the healing process. That didn't bother me in the least, but when one of then needed to move my clothes and uncovered the brief that I'd carefully hidden under my pants when I undressed, I was extremely embarrassed.
I don't know why it's so hard to let go of the shame around a garment used to manage incontinence, but after years of managing my incontinence, it's still there. If we're ever going to improve the stigma around incontinence, we have to get rid of the shame, yet at least for me, it's still there after years of telling myself that it's not a big deal, that it's not a personal failing, and that it's a common problem that lots of people have to manage.
What are other people's thoughts on this? How have some of you overcome the shame associated with incontinence?
(For those who aren't familiar with them, an ostomy is a surgically-created opening in the abdomen for waste to exit. Mine is an ileostomy, which in my case means that they removed my colon, rectum, and anus, stitched up the opening where my anus had been, and poked the cut end of my small intestine through a hole above and to the right of my belly button. It got folded back on itself and stitched down to the skin, leaving a protruding red bit of intestine where my feces can exit. I wear a special bag taped over the opening to catch the output, and I empty it several times a day as it gets full. If you want more details or have questions, please feel free to DM me, so we don't clutter up the forum with unrelated discussions.)
eAK