What Not to Say to Catheter Users

I’ve had varying reactions when someone finds out that I have a catheter. Most people are understanding and try to be polite and when someone has a reasonable question about life with a long-term catheter or my bladder condition I am usually quite happy to answer. But there are a few things people have said to me that have really annoyed me. Furthermore, there are a few recurring comments/jokes, and so I decided to write this post. I’ve rarely let people know what they have said has upset me because most of the time it is said without thinking or in attempt to say just say anything in reaction to the news that I am a catheter user. I’d be interested whether other catheter users have the same or different pet peeves when it comes to other people’s reactions.

“You Pee like a Man!”

Ok, so I don’t sit on the toilet to pee. I have to stand over it like a man. I am very aware of this. I hate having to use public toilets in case someone notices that my feet are facing the wrong way, or my pee isn’t making the usual sound hitting the toilet bowl. I’ve had family, friends and strangers say this to me and I’ve even made this self-deprecating joke myself on occasion. But, truth be told, pointing this out, even as a light-hearted comment is not funny. I have a catheter not a penis. I pee like someone who has a catheter.

2.“It must be nice to not have the feeling to go to the toilet.”

This has been said numerous times when I have told people that I no longer have bladder sensation. Yes, I suppose in some situations, it has its advantages. But, going to the toilet is a lot more complicated for people that rely on catheters. When I was ISCing, emptying my bladder could sometimes take hours of trying to get a catheter in or out and with that came pain. And just because I don’t have sensation doesn’t mean I don’t need to empty my bladder. I don’t have the normal ‘need to pee’ sensation, but I would get a lot of pain and spasms once my bladder reached over 600mls. Not having sensation is not a good thing. This would be a whole different story if my kidney just didn’t produce urine (been there, done that too), but also, that means no kidney function and severe fluid restriction. Anyone in their right mind would say not being able to have a drink even if they felt they were about to shrivel up from dehydration was a whole lot worse than not having to go for pesky toilet visits. Not being able to pee is never a good thing!

3.“Can’t you just try and pee” or “Have you tried running a tap or sitting on the toilet for longer?”

No, in reality, I am just lazy. Pfft, who has time to pee these days? I worked out that I could spend a whole extra five minutes facebook stalking my ex if I just didn’t go to the toilet!!!! If you didn’t catch on, that was my attempt at sarcasm. Yes, of course I have tried to pee. Shut up and stop being an idiot. Thanks.

4.“Catheters/Retention usually only happens to old men”

This is a nurse and doctor favourite. Urinary retention is quite common in older men, with prostate problems being a leading cause. It is on the uncommon side for a young person to have a catheter. However, there are tonnes of health problems which can lead to urinary retention or need for a catheter in young people; MS, Spinal Cord Injury, Spina Biffida, Fowlers Syndrome….the list goes on. This little phrase often crops up a lot when I meet a new doctor or nurse. Most of the time, it comes with a side portion of sympathy. It’s annoying but, I put up with it. There are at times, though, when this phrase is used to mask a tone of disbelief. ‘You’re not an old man, so clearly you can’t be in retention’ kind of look passes over their face and then they say it. There is one particular occasion that sticks in my memory. I was having severe trouble ISCing one day. I had managed once but it had taken hours. I took myself off to hospital as I suspected I would need a urethral catheter in for a while. Even though it was documented in my notes that I had chronic urinary retention, that the urodynamics test I had undergone proved without shadow of a doubt that my bladder did not work, the doctor had this look and she remarked how very unlike an old man I was. I had been pre-emptive, knowing my bladder would soon fill up so when they bladder scanned me I only had 300mls in. They made me drink loads and made me wait hours to be bladder scanned again. I was crying out in pain eventually. The man in the next bed was also being admitted due to urinary retention. He was in pain too, and had immediately been given some morphine before being scanned, found to have just under 900mls and immediately catheterised. Only then did they turn their attention back to me. I had 1.2 litres in my bladder (no pain relief, might I add). They immediately catheterised me as well, but, I can’t help but think that if this preconception that urinary retention is a man’s problem only didn’t exist, then they might have just listened, stuck a catheter in and I could have been on my way. Instead I was left hours in pain and subsequently ended up with a severe infection. It is a little easier now that I have a permanent SPC and an official diagnosis but quality of treatment for retention should not be based on gender and age.

5.“Don’t you worry about the smell?”

Yep, I do. I worry about emptying my bag and splashing myself and I worry that people will be able to smell the rotten egg smell of my pee through the bag when I have an infection (it happens). But, without this catheter I cannot live right now. I’m an over-analyser and so now I am worrying that that was your subtle way of telling me I stink. So thanks for that.

6.“There is a public toilet just down the street”

This is one especially for those working in the customer service industry. I have a toilet card. This usually allows me access to toilets in shops, even when they don’t usually give the public access. But, sometimes even the card doesn’t help. Some of you may be wondering, if I don’t pee then why would I urgently need to use a toilet? Sometimes catheters pull in odd ways and need adjusted quickly or my bag fills up quickly and I need to empty it pronto. If my bag is full, it is very obvious (I tend to wear leggings) and you can hear it sloshing when I walk. Sometimes accidents happen, my bag might be leaking or my catheter bypassing and I might be wet. That two minute trip to the public toilet might not seem like a big deal but for someone with a bladder or bowel problem, it could feel like miles full of embarrassment and/or pain. I think I am quite an assertive person, and most times I will be open and try and explain why I need to use the toilet. I don’t mind talking about my catheter but I know others can be very private. Many people might be desperate to get to a toilet (they wouldn’t have a toilet card otherwise) but because they have been challenged after presenting the card, they will put up with the embarrassment and pain and make the trip to the public toilet. Please, if someone presents you with a bladder card or explains that they have a bladder/bowel condition, please just let them use the bathroom. It might have taken a lot of effort to simply ask in the first place. You might be busy or its maybe company procedure to not let members of the public use the loo. The public toilet could be in the building next door. Make a little time, make an exception and please don’t ask questions. Just let us with toilet cards go.

7.“That is disgusting”

This is the last item on the list and the one that annoys me the most. Living with a catheter has an impact on my life every day. It’s something I need to help me live. I know I can overshare sometimes. It’s a huge part of my life and that can be hard for me to sweep under the carpet. My friends and family are great and bladder and catheter talk is never awkward at all now. My colleagues are amazing and very supportive. They are fine (or if they aren’t, they put up with me at least) with me discussing my catheter and have been a huge help during some emergencies. But not everyone is so accepting. My catheter has come up in conversation and I have been met with disgust. This can be a simple wrinkled nose and I know to shut up. I can accept that some people might not want to talk about such things. I will still work to make bladder and bowel conditions less taboo to discuss in society, but if I sense that someone simply just doesn’t want to listen to my bladder woes, I’ll usually stop. What isn’t helpful is a display of absolute disgust. A reaction of “Ugh, that is disgusting. You mean you have to carry a bag of pee around with you?! I can’t imagine anything worse” (This is a genuine reaction I have had) is not helpful in the slightest. I’m the first to admit that having a long-term catheter is far from amazing. But it allows me to live and it allows me to go about my everyday life. I can imagine a whole lot worse. A catheter is far from disgusting but I understand that it might make some people shudder. But, people should keep this reaction to themselves. This is something I have to live with each day, something I cannot do anything about. Expressing your absolute disgust is not going to make me or other catheter users feel good. Numbers 1 -6 are annoying but I can let them slide but this kind of reaction genuinely upsets me, even if your disgust is laced with sympathy. If someone tells you about their catheter and you start getting all icky, I urge you to try and keep this reaction hidden. And maybe just put your preconceptions to bed and just listen. Learning about the different medical conditions people need to cope with is always worthwhile. It helps reduce stigma and it generally just helps people with bladder or any medical condition, for that matter if we can talk frankly. Sometimes we need to be able to bring up our medical conditions, it might be an emergency or we simply might need to moan about having a hard day and why.