Thinking about shame

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I understand the point about choice, but choice should be governed by free will, not by shame.

clickable text has a good discussion of shame versus guilt. In their definition, which closely matches mine, shame is the negative emotion that occurs with the thought, "I'm a bad person." For me, it includes the thoughts, "I'm not worthy of respect," and, "These people will think less of me."

These thoughts, and the shame that goes with them, are likely at the root of a lot of my issues with incontinence. If someone learns of my incontinence, or especially if they see evidence of it, then I feel shame because of my fear that they will think less of me, or that I'm less deserving of their respect. It's all wrapped up with what others think of me, which I don't like. Unfortunately, my fear of what others think of me is not easy to simply set aside.

The question, then, at least for me, is how I can convince myself that others learning of my incontinence will not affect their opinion of me. I don't know why I get so hung up on this point - I don't think less of others when I learn of their medical issues, so I don't know why I expect others to behave differently. (Those who do judge others for their medical problems are generally not people whose opinions I should value anyway, but that gets into the point in the previous paragraph.)

I started out being very self-conscious about how visible it was when I had to wear a diaper in public, but with time and experience I learned that nobody can tell. Now, unless I'm in a situation where I need to undress or pull up my shirt, I rarely think about what I'm wearing unless I have an accident, and even then I don't worry that others will be able to tell. Maybe that's what I need to help overcome the fear that I'll be viewed poorly if others learn of my incontinence: Just as experience wearing diapers in public finally convinced my brain that is essentially invisible, getting more experience letting others know about my incontinence may help to convince me that nobody cares. Not that I need to go advertise my incontinence, but spending less time hiding it from medical people and close friends might help free me from feeling so much shame over it.

 

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Interesting idea about choosing to be more open Itapilot. For me its about choosing the boundaries of other people touching looking or presuming they have the right to invade my privacy which includes my clothing ive taken off for the purpose of ALOWING them to touch my body in a medical gown.

For instance in a doctors off8ce they might knock and immediately fly in the room.
Or say "im just goint touch your stomach Ok?"as they are reaching out to do so.

After a lifectime of putting up with unwanted touch by people often men outside of the medical field or say by a dentsl hygeniest female i find it very empowering to say NO and body block that touch until i am prepared to accept it. Or to fold my clothes aside and not have to have my underwear tossed about fron underneath my outerwear.

 

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@Maymay941 Being male and not as subjected to unacceptable behavior, I can still understand how invasive and unacceptable it must feel. I think the average female show more empathy - not all males have been up to that standard - even if most are ok. One experience was with my GP who understood my struggles and suggested that I started wearing protection and took steps to get new medication when I flared so badly. She did it in a way that left me looked after - one of the male doctors I had at the same time was blind to the struggles and desperation my fecal incontinence created.

To sum up; to me I am glad she brought it up the way she did. It was done with respect and in a way that opened an option - where I was the one to decide. And I felt she respected my decision and me regardless of what I did. It was much easier to discuss the psychological stress following my incontinence after that talk. The ice was broken, but still it was respect and empathy.

In general: Knock the door and wait for a second or a message before entering…

 

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Yes Allan_59 Its good when you find a medical person who comes along side as a partner in your choices there's certainly a lot to discuss of a woman's journey in the world and a man's provided factoring out sexual abuse and the decade one is living in. Also ones age presently.

With incontinence there seems to be a more level playing field as a point in common of having a body requiring various levels of self acceptance and need to put up personal space boundaries at an early age.

 

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Shame is something I feel is a learned response. When it comes to this issue what is fascinating is the amount of shame that we bring on ourselves versus the shame that society places on this issue.

My incontinence journey started at the age of fifteen when bedwetting started with late puberty and a bad bicycle accident. The small-town Florida urologist that I went to was used to dealing with kids or older people. There was a lot of judgment from him for using incontinence products to keep my bed dry. This led to a lot of shame. This doctor is also why I do not trust a urologist right from the start. He pushed and put me on medications that were not approved for bedwetting and the last one almost put me in jail. That is when I stopped going and getting seen by doctors for that issue. I felt that a diaper at night was a lot better than having no emotions or feelings.

Now I live as a duel incontinent person and shame sometimes keeps me home.

It would be easy to say that incontinence keeps me home but that is not the case, it is that shame of it that stops me from doing what I love to do. Knowing that an accident will happen and that it could lead to needing to change my clothing just sucks.

The fact is that I am not your typical looking disabled person. If you saw me in public you would have no clue the hell that I have been through.

I do not fault doctors for looking at me and thinking everything is okay until they read my chart.

The world seems to think that if a person walks under their own power then everything is perfect with them. The world also seems to think that we don't exist at the level that we do.

Shame with incontinence is so hard to shake because we learned to go to the bathroom in a toilet. We were "potty trained".

I have quite a bit of family who are special needs and they are not ashamed with their incontinence. This is "in my view" because they were never trained to be ashamed of it.

As society adjusts to the needs of people I see less and less of the social shame of incontinence. That is a good thing.

We should not live in hiding but rather try to thrive despite our difficulties. This is not easy but needed.

I hide everything about my issue from everyone except a select few that need to know. I do not walk around even in my own house with just a diaper on. I always have stuff, extra covered, tucked in, and hidden when I go out. There are a lot of people with less shame than me.

I wish I had less shame but all this is still kind of new to me during the day. Maybe one day I will just live life and not care but it is not today.

 

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@ThatFLGuy Wise words - it is so true, disability is not always visible. It is another stigma thing in our society. Sorry to hear about bedwetting medicine that was illegal. The adult me agree - it is not worth risking that much just to avoid a night time diaper. I was not feeling like that as a young bedwetter - but realize that accepting diapers then as I do know, would probably have given me a better youth.

 

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@Allan_59

The doctor from my childhood was a quack. He tried me on two different medications for bed wetting before any testing. Then went full-on with the test finally deciding that I was depressed and putting me on something that had huge a personality shift for me.

The thing is that doctors here in the United States are not limited by what they can prescribe to you except if a pharmacist sees something that is not right.

In my case, the doctor gave me antidepressants that led to me having no emotions or pain while I was on them. I put my fist through a window during a fight with my older sister and never felt it.

That is why I had/have such a huge problem with the urologist that I was sent to in the last few years. She was pushing medications before even doing one test. And I was like "NOPE" figure out what is wrong then treat it. Not, "Here take some pills that may make you The HULK and hope they fix your bed-wetting.

It is such a stupid way to do things to just touse meds at people. You do not add ice water to an overheating car (You will crack the motor) You work to find out why it is overheating in the first place.

Even now, I just went from having an ileostomy that was hurting me enough to make me not want to wake up in the morning. That was done because I had rectal spasms and bowel, and bladder incontinence due to pelvic floor instability. To have it reversed because they should have done a test before doing it in the first place. I am just grateful that it was not permitted.

Now I am back to full duel incontinence, still have spasms but it is better than the pain the ileostomy caused.

2024 is going to be a war to get done the testing that I should have had before the ileostomy. And it is a war I am going to win.

Going to be less ashamed to tell doctors like it is and advocate for myself with the full weight of what I need. If that means saying things loud enough that others hear me then so be it.

 

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@ThatFLGuy Wow- that was a rough story. I wish you the best of luck in 2024 and hope that your health and pain is getting better.

And happy Thanks giving

 

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@ThatFLGuy, what an awful experience! I remember you discussing after you'd gotten your Ostomy that afterwards you learned that they hadn't run all the tests they should have, which is inexcusable. A surgical solution should really only be done when all other options have been examined, and all diagnostic tests have been done.

In some ways, it's another matter of boundary issues. Too many doctors want to make the decisions they think are best, without bothering to really take the patient's own wishes into account.

I'm very fortunate in that most of my doctors don't do this. My GI advocated close monitoring when we found low-grade dysplasia during a colonoscopy in 2020, and the pathology report after we finally did the colectomy really validated that approach. We could have continued to do that, if not for my upcoming liver transplant and the increase in cancer risk that will come with immunosuppression.

Some of it comes down to boundaries, as @Maymay941 discussed above. Doctors sometimes want to overstep the boundaries of being a consultant and advocate for the patient, and instead want to make decisions for the patient. You're doing the right thing by pushing back on that and making them give you the information so you can make the best decision for yourself!

 

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I felt shame with my public accident and even right before I came on here at the beginning. I’m still just learning to deal with this, came to grips with wearing protection, instead of being proud and “ risking it”. See Dr next week. Nervous but hopeful.

 

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@Optimest

I understand this a lot. It is not easy to accept that something is different. For me, I went from being at work running to the bathroom a lot more than I was before my first bowel surgery for a few months. Then out of somewhat nowhere, I ended up not being able to have a bowel movement. Stuff was checked out and I was given some medications to try. Things got worse and worse until all hell broke loose and I have never been the same since. It sucks. My life was going great. Job, College, and a new apartment. The next thing I was walking through security at my job with a bag full of adult diapers. (Already was a bedwetter so Diapers were a normal thing but just at night)

Now after years of stuff, I am still dealing with worry and even shame about what is now. But, I don't dwell on it all the time.

I hope that your doctor's appointment goes well and they find something stupid that can fix your issues.

We are here if you need tips and ideas for stuff.