How Did You Tell Others

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I’ve recently been struggling with an issue. I have total bladder incontinence and now have to wear diapers 24/7 and I have family that’s not real easy to tell things too. I also have had a couple close calls at work where people have almost found out my problems. It’s very stressful to keep it hidden but I also don’t want people to find out on their own and talk about me. So how did you break it to friends family or coworkers?

 

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I told my girl friend after she caught me changing into a diaper to go to bed - she was very understanding and I was fortunate for that - I’m under the impression that if I can hide it I won’t advertise it - my issue is so far only at night - so during the day I can just wear a guard pad and I can get by - I know it’s not much help - I would only advertise to the people that need to know and who are true friends - strangers knowing- who cares

Chad

 

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I tell anyone who cares to listen. If you don’t make a big deal of it, others won’t either. Everyone is struggling with something. I found that friends, family, and colleagues have been understanding, and more inclined to open up about difficulties they’re grappling with themselves.

 

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You are not obligated to tell anyone!! Hippa laws protect your privacy. On the other side, if you feel you need or want to tell others, my advice is to know your audience and be straight to the point. Through normal conversations with others I’ve found most people are very judgmental and are quick to make assumptions and come to there own conclusions on things. Be cautious and only tell those that absolutely need to know. The only people that know about my Incontinence are my wife and my Dr. my kids also know but they only know because they’ve all come across my supplies. I don’t tell others because they don’t need to know and I don’t want them to know. It’s my issue and in all honesty only me and my wife have to deal with it.

 

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Be straightforward and only tell the people you want to know. Should be on a need to know basis.

 

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My problem began with prostate cancer and having had my prostate removed. I've told people about that because I wanted others to benefit from knowing they need to be their own best advocates as I was...... insisting on doing everything to get to the bottom of a slightly but nonetheless elevated PSA. In my case we discovered a stage three spread and the need for a prostatectomy. The bladder problem is a side effect of the prostate and some associated nerves being removed and so one topic naturally leads into another. Unlike some folks we hear from who must deal with leakage as a chronic condition, I am hoping mine will improve over time (although eight months with limited improvement seems a long time to me). The kegals continue. That said my issue is during the day and not at night and so I occasionally find myself in situations where it is necessary to let folks know why I need bathroom breaks more frequently than before. As has been shared just indicating the matter of fact nature of the problem is the best approach in my mind. Everyone I've shared this with have been both accommodating
and appreciative that I shared my story ....some have even stepped up the frequency of their PSA testing to an annual schedule.

 

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I don't tell anyone besides those that can peroxide some assistance. Coworkers and the like aren't medical professionals and don't have the ability to provide medical advice. I don't tell anyone that doesn't have a need to know. Loose lips sink ships.

 

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I have a dual take on telling others. First, some clarity. I am on this as well as incontinencesupport.org as the same screen name.

In 2017 on that forum I sought out advice about telling someone that I was in an internship with about my then only nighttime issues because I was refraining from some life things due to it.

Here is the thing, looking back I should have taken the advice not to share it with that person. Hindsight is 20/20 and all.

Truth is that I worked my butt off in an unpaid internship that resulted in someone else being hired for what I was doing for free while I was still under a commitment to do what I was doing.

Did it have anything to do with disclosing my incontinence issue? I cannot answer that. But even when I got sick and almost died only other members of the church I was interning with showed up. To this day this person does not know what is now going on with me. Mind you, we have known each other for almost 20 years so.


Now, for family, I say if they need to know then I should never be an issue. Stick to the facts and no TMI. I have been away from most of my family anyway due to covid but no one has treated me differently due to what is going on.

Coworkers are never told for me having done that before leaving where I worked last. It was very hard to hide at the time.

Anyone else like friends/Room-mates are kind of as needed.


Now, here is my big problem/was my big problem. I did not have any kind of still don't have some big word diagnosis for what is going on with me. A lot of times if you can say you have -------. Then people will understand. That was not my case. Now I know why things are so bad and can explain them to family.


All in, I would say just trust your gut. If you need to tell then do. Just remember you are protected by both ADA as well as HIPPA so you do not have to say anything.

 

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Tbh i don't really tell anyone. It's none of their business. I have talked to my current supervisors, and my HR about my issues due to where they're bathrooms are. They allow me access to the bathrooms in the hr office area to change so I dont have to carry my bag out to the bathrooms that are out on the factory floor for everyone to see. Most of the places I have worked though I don't tell anyone except HR and that's usually only cause either I can't give a urinalysis.

As for my family very few of them know, and the ones that do know it's not really something we talk about.

 

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My incontinence came back in my late 50's was hard to hide from my wife so we talked and going back into diapers was the thing to do to keep things dry.We had no children so was somewhat easier.

 

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I am housebound in a wheelchair so I don't meet many other people. I guess all my visitors know I am doubly incontinent. I don't bother to hide my supplies. Incontinence is not something I can avoid so I don't think of it as something to be embarrassed about.

 

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My problem right now is people have found out at work. I only shared the information with HR but I was getting out of a chair one day and my shirt didn't fall down right and a few saw I was wearing a diaper. Since then it has been kinda bad because people won't be grown ups about it and come up with some pretty mean things to say so the word is out. I tell them I have medical issues and I can't help it but you know how that is. People can be so immature.

 

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@Randall

So, I had that happen as well before my medical situation caused me to not be able to work at all.

Go back to HR. That is a huge ADA violation the employee that's making comments as well as where you work can face a huge lawsuit over that.

I got a security guard fired for acting stupid about my backpack and my incontinence supplies due to ADA violation. I actually had to talk to HR to not make a bigger deal out of it because some states have fines for ADA violations.

@Randall

Don't put up with that.

You deserve to be treated with dignity talk to HR and if they say that they can't do anything then tell them you are reaching out to an ADA lawyer.

 

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@Randall what flguy said above is the correct thing to do. I have had the same issue with immature individuals at work. Have to go to HR to nip the entire issue. They are required by law to make a safe harassment free workplace. Your coworkers are making you uncomfortable, and harassing you over a medical condition. It is a clear violation of your rights under ADA. If they do nothing about it then you get a lawyer who specializes in ADA. There are heavy penalties for companies over ADA violations so few will do nothing.

 

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Gossip is the only thing faster than the speed of light, and bears little or no relationship to the truth. The most corrosive chemical known to science. FaceBook is the ugliest demonstration of that.
In law, HR has the same responsibility towards confidentiality as the Medical Industry. Randall's experience is appauling
Being matter-of-fact works on mature adults - if you can find them. They are probably the ones not dissing you. So many "adults" never reach Piaget's final level of moral development.
I was subject to random drug testing in 2 of my jobs. Thank goodness the law required time between notification and the test (several hours). One testing company tried to bully us into "right now". We called in the Federal Authorities. Neither the testing company nor the employer was gracious about it, but they had no choice. Maybe we had a close relationship with the Federal enforcement that required the testing & wrote the rules; not sure every job place does.

 

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@Randall like many here, I’ve kept it on a nerd to know basis. Before I started wearing protection I had a couple of noticeable leaks that a coworker and a friend saw and brought to my attention. I just explained to them that there was something wrong with my bladder and I was having it looked at. Thankfully they were understanding and both have only raised it once since to ask how things were going. I just told them that I was managing it and left it at that. Thankfully I haven’t had anyone (that I know of) spot the waistband of any of the absorbent products I have worn so am yet to have that uncomfortable conversation. I’m sure the day will come. My urologist, pelvic floor physio and psychologist know because it’s clinically relevant to their work, as do some of the workers at the radiology clinic I’ve been attending for MRIs and ultrasounds. I have had some semi-awkward conversations with sonographers who weren’t aware of my incontinence, e.g. explaining why I can’t wear their disposable underwear.

 

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Hi
I agree with Mike_Murray. My situation is identical to his. I also tell anyone that wants to know. If friends and family can’t support you then maybe they’re not as good of friend as you thought. Family is different. Sit down and talk with them.

I have alerted several people to watch their numbers and helped them. General Practicians just don’t get it. My PSA was a five and was told not to worry .
By the time I had a biopsy it was a 7 and was a 9 by the time I had surgery .
I use Men’s Liberty external catheters with very good results. Look at my other posts or side bar email and I can help you.

I live in Florida and rarely wear long pants other than church or special occasions and no one knows that I have a leg bag.

I hope this helps. Remember, God is in control and when he closes one door he opens another . You might save a life just by talking about it.

1Cor 2:9

 

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Letting others know is easy. If I think they "need" to know I'll explain "since my accident I take medication that helps control my bladder because it has a mind of its own and it likes to surprise me at times".
I make it a point to explain more about the medication and less about the fact that I wear something and as always joke about it to lighten the conversation.
I've lost count how many people I've told and rarely will you get a second question because 99% people really don't care and explaining about incontinence is more about causes (spinal injury my case) and less if any about what a person does or doesn't wear under their clothes.

 

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After 13 years of stress and worry about others noticing I am wearing diapers, I came out last fall on social media. Probably not the best way but figured I could reach the most people with out telling over and over again. I have over 1,000 friends on FB from school, the Marine Corps, my time in LE and people I have met. I found a picture from Real World Incontinence (NO Stigma, Letter N with a diaper for the O Stigma underneath) and used it along with an explanation and have had nothing but positive feedback.

Good luck in how ever you decide to share, it is a huge weight lifted off of my shoulders and am glad I did.

 

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Thank you everyone for the support I really needed all of this. It is a real drag to go to work every day for your family to have to put up with childish individuals over my incontinence. So what if I have to wear diapers I could be milking the system but I am not!! You all are my best friends