on the subject of stigma

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how many people are fed up of incontinence being linked to the older geniration?, and that if you're young and you have it, you're basically odd.

I have found this anyway:. if an older person has it, people generally accept it more (as a side affect to something like dimentia), but if you're younger and have it, their's not really any interest from people.

I'm in my 20's, and in nappies 24/7, and now for a fact that their are others in my age group experiencing the same, but it's the older people who get talked about, and it's the older people incontinence gets linked to

 

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I'm 42 and now in full time diapers for complete urinary incontinence with occasional bowel leakage.

 

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I'm 43 and wear pull ups 24/7.I don't think really think about it they're too busy with what's going on in their own life

 

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I'm 31 and wear large shaped pads during the day with net pants and a nappy at night.

Its for overactive bladder urge incontinence.

I find if you tell people or dealing with medical professionals there's a lot of questions asked compared to if you were an older person.

 

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Let's just say I'm kind of "up there," getting close to that point, but am very active. I go the "pull-ups route." Incontinence is something that can affect people at any age. No one age group is immune from it. After all, any age can be injured in an accident or sports, get MS, have a stroke, birth defects,have childbirth complications, have a spinal injury or any similar issue. People with any of those conditions, and I'm sure more, can be affected by incontinence. That said, granted the elderly seem to be the group most associated with incontinence, especially those staying in nursing homes. But there are plenty of us active folks who are incontinent as well. And Emily, please don't think you're odd because of incontinence. It's something you share with all of us.

 

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I'm in my 20s too. people think i'm just not trying hard enough to control my bladder and bowels I'm in nappies 24/7 too and i hate that people assume its only older people and i hate being incontinent

 

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@Martoli, Hi, I don't believe for a minute that people with our condition are "just not trying hard enough." The urinary and digestive systems are very complicated and like any body system can have malfunctions which is what we experience. I mean if someone had a heart ailment, or neurological impairment, hearing or vision impairment, it's not a choice to have those. It's not our choice we're incontinent either. We have it or we don't. It isn't something that's eliminated or cured by "trying" hard enough. But what we can do is use any number of the good absorbent products on the market to help make things manageable for us.

 

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@Martoli, Hi, I don't believe for a minute that people with our condition are "just not trying hard enough." The urinary and digestive systems are very complicated and like any body system can have malfunctions which is what we experience. I mean if someone had a heart ailment, or neurological impairment, hearing or vision impairment, it's not a choice to have those. It's not our choice we're incontinent either. We have it or we don't. It isn't something that's eliminated or cured by "trying" hard enough. But what we can do is use any number of the good absorbent products on the market to help make things manageable for us.

this is a good post.

well said...

 

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Thank you, Emily. I appreciate your comment and everybody here appreciates you!

 

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@Martoli, Hi, I don't believe for a minute that people with our condition are "just not trying hard enough." The urinary and digestive systems are very complicated and like any body system can have malfunctions which is what we experience. I mean if someone had a heart ailment, or neurological impairment, hearing or vision impairment, it's not a choice to have those. It's not our choice we're incontinent either. We have it or we don't. It isn't something that's eliminated or cured by "trying" hard enough. But what we can do is use any number of the good absorbent products on the market to help make things manageable for us.

Just saw this wonderful response <3 sorry for the late reply

 

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HI @Martoli, Thank you for your kind words as that helps make my day! And that's what we're all about, is to make everybody's day here more hopeful and pleasant as well as to bolster each of us up! I hope that whatever you're using is working for you. Most of all, do get engaged in activities you enjoy and have fun! With protection that works for you, you may well forget you're even wearing it as you do things and get involved. If you'd like more advice on what to wear, we are open 24/7 (well maybe not quite, we've got to get our sleep too, y'know!) Or even if you just have a question or just want to get something off your chest!

 

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This thread really resonates with me and I've been meaning to reply to it for a while. I completely agree it's frustrating that certain disabilities are associated with certain age ranges, even though they affect people of all ages. With my autism, I have the opposite problem in that everything is just marketed for kids. Being interested in skateboarding, I got excited recently when I saw Vans had launched an 'autism awareness' range of clothes and shoes but of course it was just in their kids range.

With the incontinence, it's mainly on the other end of the spectrum, which as a 29 year old with incontinence issues makes it rather embarrassing. It may seem silly, but I wish that they'd do adult nappies with young people in mind with more stylish designs and less clinical and care-homey. Regular underwear has designs on after all. I was using the Tykables Cammies as they were a really high capacity nappy with resealable tapes and whilst they were really thick, the fact that they had a camouflage design made them feel much less like a nappy and more just like a different type of underwear. The design kept staining my skin though so gave up in the end.

My guess is that it comes down to business. Companies are going to market products based on which demographic is going to buy the most. Whilst I'm sure lots of younger people have incontinence issues (and it seems there are quite a few of us on here), I imagine there probably aren't enough of us to make 'young people' products viable.

However proof that stereotypes aren't always right: I've just gotten out of hospital and was on a ward with people who were in their late 80s and 90s and yet the only person who had issues and was using incontinence products was me, the 29 year old. It didn't make me feel great to think that I had more bladder and bowel issues than people six decades older than me but I did find it quite ironic really, considering how these products are marketed.

 

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Quite thought-provoking indeed, @Sci_Fi_Fan! Excellent post! And I like the idea of camouflage nappies! And maybe cammo pull-ups! I would wear those! Sorry to hear the design kept staining your skin. How many of them did you wear before you noticed the staining? What I'm getting at is if it's say after the fifth time if you could wear them four times and then switch back to your usual underwear for awhile, and that might be an option as well. Does that make sense?
When you talked about being in the ward with mostly 80 and 90 year olds, I did [pick up on the irony. Can't really explain it as one would think it would be those folks who have incontinence issues, so I'm surprised that wasn't the case. And after all the products we see out there are marketed for an older population, usually with older people as "models."
Over here at NorthShore they have the regular nappy-type product that is made of plastic and we think of those as being white, right? But this line at NorthShore has several different colors. They are still plastic with the tapes and all, but they come in bright green, purple, and I don't know, maybe red? Their marketing ploy is to wear whatever color you choose with whatever the main colors of your outfit, i.e., street clothes is going to be. Kind of coordinated.
And your post does drive home the point very nicely that stereotypes aren't always true to form.

 

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FYI...The other color for the Northshore Supreme diapers is Blue. All of the colored Supreme's have a very subtle dot pattern but it's thankfully not babyish at all. I liken the blue (which I have) to a starry night. I, like others here, use to wear colored "regular" underwear so it seems completely natural to me to wear colored diapers. I feel the colored diapers also have a subtle mental effect that when you see yourself in the mirror you don't look like a medical patient.

 

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@Padded53 You're right, it is blue. And they do have a very subtle dot pattern so it looks like something that adults can wear and not feel they are childish. And I like your reasoning that when you look in the mirror you don't see yourself in something that looks completely clinical. That's a great endorsement for the Supremes. (sounds like we're talking about a famous Motown group) If I wore those and not the pull-ups it would be very hard to turn those down!

 

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@billliveshere I was getting staining from the get-go really and it's a known issue with that design. It didn't actually cause any discomfort or irritation to my skin but considering I was waiting for a urology referral at the time, I figured that blue stains would be hard to explain away and I found them insanely bulky so switched to the Rearz elite which are a similar capacity but more discreet in terms of bulk (alas, the same can't be said of the design!). I am tempted to try the Tykables again if my issue is still persisting by the time my current stock of products runs out as they have the best tapes of any product out there.

I like the sound of the NorthShore products but alas they don't seem to be around in the UK. I think I've gotten over my aversion to using, how shall we put this delicately, non-mainstream brands with childish designs as I just got to the point where I wanted to be 110% that my protection wouldn't fail me in certain scenarios (ie travelling, long medical procedures etc.) and swallowed my pride for the added peace of mind. As I said on the Tena thread, I find most of the regular brands over here in the UK aren't all that absorbent relatively speaking. The ID Expert taped nappies I bought supposedly have a capacity of 2750-2950ml but they're useless. As thin as paper and the wetness indicator goes off after the dribbling from one visit to the toilet. The Tena 'Plus' products were also useless, I do find a lot of the terms they use to describe capacity quite disingenuous.

Still hoping that my urology consult will solve my issues and I can be free of nappies before too long. Even if I just have to wear them for IBS flare ups it would be a lot better (and cheaper!) than having to wear protection 24/7 like I do at the moment. I've sorted private medical insurance but it doesn't cover pre-existing conditions but does for acute flare ups which are likely to respond to quick diagnosis/treatment so that may be an avenue as my symptoms have gotten worse recently. It's also why I'm not entirely convinced they're separate to everything else going on with me at the moment.

 

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Hi SciFi, It sounds like you have to endure a lot of trade-offs in finding something that's highly absorbent, fairly discreet and doesn't have designs that you find, er,...uh, let's say inappropriate for you. If it were me I'd have the same misgivings myself. But I think you're right in that you first have to consider that absorbency is your number one priority and you went on from there! And absorbency is important for travel and sitting through long medical procedures, etc. Now if there was a way to find something absorbent but without designs that are deemed undesirable for an adult, we would have something there! The NorthShore brand is a great one as everyone here can attest. Of course I'm not familiar with the distributors or products in the U.K. Can I suggest you send a PM to Adam at NorthShore? He does appear in some of the threads here and explain that you are looking for something with the absorbency you want but with more appropriate designs for an adult, such as their solid color plastic-backed briefs. For all I know, the folks at NorthShore may have picked up the idea for solid colors from an overseas company. One just never knows! A place like NorthShore knows the competition, not only domestically but overseas. And Adam might be able to suggest someone in England that you may not have known about who can be of help to you. Worth a try. Although you expressed the hope you may ultimately not need nappies at least not for 24/7 but for IBS flare-ups. Even so it would be good to have something whose absorbency you trust but also won't compromise your dignity to wear. Hope this helps!

 

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@emily91 Good topic. As a bedwetter my issue comes from the other end of the spectrum like @Sci_Fi_Fan said. When you hear bedwetting you typically think, oh a kid and not an adult. Now my bedwetting started when I was a teen so guess technically still a kid of sorts, but when it continued into college and beyond I felt like, why can't I get this lil kids problem under control.

@billliveshere is right in that anyone for any reason at any age can develop incontinence. And as @Sci_Fi_Fan said it would be nice if incontinence product producers would incorporate younger people living their life to the fullest even while dealing with incontinence/enuresis issues in their advertising. Yet it seems to always be older people and that sets up the misinformation and stereotypes.

@Martoli , dude I get you. I use to use that line on myself when I'd wake up wet. I'd be like man what wrong with you? You weak, why can't you just get it under control. You do most nights so must just not be trying on the nights you pee the bed. I was hard on myself sometimes when I'd bedwet. But just like you said, wet re trying to not wet (day or night), We don't want to be peeing ourselves, we wish it was under control. Yes it seems when you are younger and wet it is like, Oh he lazy, Oh she just not trying to control it. Oh they doing in case they don't care. GRRRRRRRRR Gets me worked up.... And yet I was that person to myself in telling myself, Bro why you peed in the bed again, lame. Dude you pissed the bed you weak. What JT another wet bed, you a damn pee boy. I was rough on myself when I'd get frustrated about my bedwetting. And in the beginning and until prob about till I was in my 30 that was often when I'd wake wet.

So yeah there id my thoughts on the stigma. I really thing if advertisers would start to show younger people and people living their life just like so called normal people that would go far in dismissing this stigma that incontinence is for older people only (or bedwetting is for kids only in my case)

 

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This is a post that had me really trying to figure out what to reply.

Truth is that as someone that is 35, but looks a lot younger I feel every word of this post in my very soul. Nurses, and even doctors are shocked to find out what is going on with me.

There has been issues getting paperwork done because nurses that pre-fill out the paperwork for the doctor to finalize don't know what is going on and don't figure that I am having the issues that I am.

Truth is that the stigma that comes with being full time incontinent means that if you are not over 50 and or not in a wheelchair that people will assume that you don't have any issues with this condition.

Incontinence is a disability, straight up. Walking around a store with a backpack with get any guy on security's radar. Some stores will not even allow a backpack in.

It is a huge issue when I go shopping around where I live. (Going to get me a small man purse for just that reason)

It is crazy to me that according to statistic there are millions of people in the U.S. that suffer from incontinence yet we deal with such a stigma.

I truly do not get it....

Here is that facts...

I am 35 years old.

Started wetting the bed after a bicycle accident during the start of puberty.

I had every test done but was treated by a doctor like I was crazy and gave up.

On 12/20/2018 I was rushed to the ER in Florida and they found that I had two abscesses and a perforation in my bowel.
I spent the next 12 days in the hospital.

In January of 2019 I had my first colonoscopy, I was the youngest patient with what I had going on that my doctor had seen. (Funny fact, me and my dad both had a colonoscopy the same day at the same office.)

Five days after my Colonoscopy i had another flare up and ended up back in the ER.

At that point the doctors and surgery team told me that a part of my bowel had to come out.

In February 2019 that happened.
I spent 6 days in the hospital again and was the youngest person on my floor.

Here is the thing.

A lot of what I thought was just part of my recovery was really not.

I am and have been running to the bathroom for both bowel and urinary issues since surgery.

No doctor has every treated this like it was a big deal.

I brought up the night time issues several times while still in Florida to doctors but they always treated it like it was not their area of the body to deal with so not their problem.


Fact is that many General practitioners, ER Doctors and even Gasto. Doctors don't seem to think that this is a big deal that effects our social life.


The stigma needs to end and doctors and society needs to wake up to the fact that We deal with this.

It is sad we have a stigma for something we cannot control.

 

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No doctor has every treated this like it was a big deal.

I brought up the night time issues several times while still in Florida to doctors but they always treated it like it was not their area of the body to deal with so not their problem.


Fact is that many General practitioners, ER Doctors and even Gasto. Doctors don't seem to think that this is a big deal that effects our social life.

@ThatFLGuy This part of your post really resonated with me. It's struck me that doctors rarely ask you how you're coping with an issue. Certainly with my incontinence issues it's only ever been a student doctor at the hospital who took any interest, asked how I was dealing with it and tried really hard to get me to see a urologist then and there which unfortunately wasn't possible. I mean, on the one hand, sure, a quick trip to Google will show you that adult nappies are a thing but even then, it's something of a minefield. I found out that most products out there aren't all that absorbent, I wasn't changing regularly enough at the beginning and it's taken me a year of switching through these products to finally find some which suit my needs. This could have been avoided if I had been given proper advice.

At first I was just using guards as I figured 'it's just some dribbling after peeing' which seemed to be a very minor issue. I didn't realise just how much leakage that meant over the course of a working day and found that high capacity nappies were the best solution. Some proper advice would have helped with that, avoided embarrassment and prompted better hygiene/self-care. I also forget that I have actually been referred to a urologist but considering that they just seem to be doing phone consults at the moment and I need tests to test my bladder function, it's like nothing is being done.

I also completely agree that doctors really don't seem that interested on the whole about the bigger picture and how symptoms may tally up and just put stuff down as a 'chronic' condition, even if its getting worse unexpectedly. I mean, sure, I wet the bed on and off until I was fifteen (well, once when I was seventeen because of alcohol...) and I've had urge issues until I was around twenty but I did have a few of years of relatively great bladder health barring the after dribble before the dribbling started getting worse last year and the urge issues have become the worst they've ever been when the other symptoms started to show up. You'd think this would be noteworthy but nope - just linking stuff back to when I was a kid/teenager. In my experience, doctors tend to focus on one symptom that also coincidentally is their area of expertise. For example, I was put on the gastro ward purely because a bed was available and the doctor zeroed in on my IBS symptoms even though they're not what brought me into hospital. Sure, my chronic IBS can be a pain in the ass (pun intended!) but the muscle weakness and brain fog are stopping me from doing my job properly, the IBS isn't.

I've always had a phobia of hospitals and anything surgical and so used to joke to people "well, if my dentist or osteopath can't fix it, I reckon I'm screwed", and my recent experience has shown me that, even after going to hospital, that seems to be true! The new private medical insurance I'm sorted doesn't cover for chronic conditions but 'can' for acute flare ups that are likely to respond to quick treatment/diagnosis so may try and see if it's possible to see anyone through them to sort out the worsening bladder stuff.