‘When you gotta go, you gotta go’. Everyone goes, everyone uses a toilet and some of us just happen to go in bags. So what? Why is it still so embarrassing to talk about it? I’ll admit I’m embarrassed just writing about it. I kept chronic constipation as close to a secret as possible for nearly 10 years, then I got a stoma and realised just how heavy the burden of shame had been. It’s time to ‘come out’, and today I’d like to discuss the nightmare that is the humble public toilet.


Not All Illnesses or Disabilities Are Visible

It’s still all pretty taboo and not easy to talk about, which is why there should probably be more conversation around pee and poop and invisible conditions.

Thankfully there’s more awareness of invisible illnesses and chronic health conditions these days, but there’s sadly a long way to go to readjust commonly held misconceptions and socially ingrained judgemental assumptions. Every little helps in breaking stigma and raising awareness because, hopefully, it’ll all add up. I’d like to think that future generations won’t be as badly affected by limited accessibility in public facilities or social judgements or embarrassment or bullying.

I have an end ileostomy and my large bowel was removed, so I use a stoma bag. I also have an inconveniently temperamental bladder due to damage from my first surgery. I don’t have a suitable response to someone questioning my pee issues, so all I can say is it’s a mix of nerve damage, a stubborn bladder and the ability to wee for England. While the stoma is visible, it’s not obviously visible because it’s hidden underneath my clothing so I’m referring to it as an invisible condition. Likewise, you can’t ‘see’ bladder issues. You also can’t see the fibromyalgia, chronic fatigue, lung scarring, nerve damage elsewhere, auto-immune conditions and chronic pain. You can’t see the need to empty or change a stoma, or to pee more times in a day than I can count. On the outside I look fine, albeit usually tired and disheveled.

I have a ‘can’t wait’ card for my stoma, with the theory being you use it if there’s a queue and you’re desperate. It probably should be a ‘I can’t use this’ card because actually using it is something I’ve never been comfortable with doing. I imagine I’m not alone there because for there are likely many people that are shy or have anxiety that don’t want to attract attention to themselves by having to whip it out. It’s hard to feel like you’re getting special treatment, even though if the shoe were on the other foot I’d want to know someone had a condition so I could let them use the loo first.


It Takes The Pee!

Getting to the loo when you’re out and about can be a test of sheer will and resilience.  Physically getting yourself to one regularly throughout your outing is the first hurdle. Add to that waiting in queues or having to hijack the disabled loo and can become a bit of a nightmare.

Considering all of us need to use them, why are public toilets in such short supply here in the UK? And why, when there are so many people with illnesses and disabilities, are disabled toilets often a nightmare? Those with invisible conditions face another hurdle to confront: ignorance and lack of awareness.

I’ll hold my hands up to say that I’ve not consistently considered invisible conditions my whole life. I’m guilty of judging, back in my younger years before I developed health problems of my own. But this was only ever with thoughts in my head, I’d never give a look or comment because I wouldn’t want to cause offence. I think you become all the more aware to be compassionate and mindful of invisible conditions when you have a health issue yourself.


My Experiences As A Head-Turner 

I’m no model and I’ve got a face for radio, so that’s not what turns heads when I’m out. I’ve never pushed in a huge queue with my ‘can’t wait’ card either, no matter how desperate I may have been. But I have needed to use the disabled toilets a few times, and that can turn heads. I’ve had comments and judgemental looks that suggest I should get my fully healthy, fully able-bodied self to another toilet and stop being too lazy and impatient to wait. If you can’t see a wheelchair, many people think that means the person doesn’t need the disabled toilet.

There was a time I needed the disabled loo in a train station because I had a stoma leak and I figured changing the bag before it fell off would be a good idea. There was one woman already waiting, who also looked ‘fine’ by the way, and I patiently waited behind. A woman came up behind me, probably twice my age; she seemed quite spritely as she jogged up to the toilet but she had a stick, it just wasn’t in use. A station attendant appeared and I translated the look of incredulity on her face to mean he considered I was an impatient young lady trying to push her way to the disabled loo to avoid waiting for the regular toilets. She rather pointedly said, “Mam, maybe you should let this poor lady behind you go first because she needs to use this toilet. It’s for those with disabilities only”. As I was stood there, embarrassed, not just by a bag of poop inching its way off my skin, but by feeling reprimanded, I felt utterly ashamed.

I was struggling to stand with my hips on fire, my whole body was screaming in pain and I was bone-deep exhausted, so I wasn’t in the best of moods at the time. I did stand up for myself that day but barely, being embarrassed and apologetic in saying, “Please, I need this toilet, I’ve got a stoma”. Both the attendant and the lady behind me looked shocked. “Oh right, of course, ummm, sorry, go ahead”. Permission granted.

My use of disabled loos has been quite infrequent, but on each occasion I’ve had to dig deep for courage. I mentally catalogue my repertoire of responses to any looks or comments, but what typically happens is that I’ll mumble my apologies, shuffle off, probably have a little cry and hurry off on the mile long walk of shame to find another disabled toilet.

I’ve not had endless bad experiences, but there have been a couple. I wonder what it would be like if I was able to go out more, would I be multiplying the number of times I’ve felt ashamed and embarrassed? The crux of the problem is often a simple lack of consideration for what can’t be seen. It’s a human thing to do to judge and make assumptions, we all do it. Sometimes you’re right, but sometimes you’re not. It’s just unpleasant to act on those assumptions when it could cause offence, shame and humiliation to the person you’re judging.


Toileting With A Stoma Bag

Generally speaking, I don’t usually need a disabled toilet. Those with stomas, unless they have other disabilities, likely find normal toilet appropriate for emptying their bags. But the toilet really should be half decent with a seat otherwise things can get tricky. It’s changing the bag (taking it off and applying a new one) that’s trickier still in a normal toilet because you need more space, a little water, somewhere to put your medical supplies, and a little room for movement. Half the time you can barely sit down and lift your elbows out without hitting both sides of the stall, hence the need for a disabled toilet. 

Another thing that really gets to me when using public loos is feeling rushed. I panic and I worry I’m holding up other people. If you’re in a disabled loo there’s likely only one of them, so if someone else is waiting you know they’ve got no other option but to count the seconds until you blessedly get out.


It’s Not Just Any Toilet, It’s A Good Toilet

There are a few criteria for a decent public toilet. It must be clean, because surely we all want a clean loo. It should have a GSOTP (good supply of toilet paper); we’re not on ration and it’s disturbing to wonder what people do without any loo roll if they don’t carry a packet of tissues with them. A toilet seat, which sounds so obvious and yet some loos seem to be missing theirs. This is particularly important for those with stoma bags that sit down to empty the bag. You really don’t want to scooch back on a broken or revolting seat. It needs a working lock. I get flashbacks of toilet-related incidents involving broken locks and randomly opening doors. Apparently propping your bags against the door or even using the full strength of your legs is not enough to stop some people from forcing the door open and then acting surprised to see someone in there. I also want a toilet at a reasonable height. Not too low, not too high. The disabled toilets are typically too high for me, and that’s not just because my feet dangle as though I’m a toddler on a giant’s chair. A dodgy bladder and weird nerves means peeing is often, but not always, a no go on higher loos. It’s a frustrating game of chance and I know it sounds weird and I can’t explain it, but it’s not some random diva demand for a precise toilet height.


Some Polite Pee Etiquette

I do wonder whether pee etiquette needs to be taught in schools, it would come in more handy than trigonometry.

If you push the toilet stall door once and it doesn’t budge, take the hint that someone’s probably in there. Don’t keep pushing at it and trying to jiggle the lock. You won’t hear the murmured “someone’s in here” from the now-terrified person inside over your constant rattling and sighs of exasperation.

Sometimes it’s obvious that the disabled loo is a convenience and not a necessity. Perhaps there’s a long queue in the regular toilet and someone hurries over to the disabled one so they don’t have to wait and they’re chatting about it to their friend. But sometimes it’s not so obvious. Before you judge or make a comment, consider whether there may be more than meets this eye to this otherwise ‘healthy and fine’ looking person veering for the disabled toilet.

If you want to say something, think twice. It’s not high school so say it to the intended recipient. Better yet, keep it to yourself. Don’t go gossiping and making someone who likely already feels embarrassed feel more self-conscious because they’ve had to use their ‘can’t wait’ toilet card or have had to use the disabled toilet because of a condition you can’t see.


Why Did I Write This?

This article isn’t meant to berate or make anyone feel bad for the times they’ve made assumptions. Nobody is perfect and we all do it, we all make judgements. I just want to raise some awareness so that maybe a few more people think twice before giving a look or verbal criticism. Consider what may be unseen underneath the ‘fine and healthy’ looking exterior. And for anyone reading this with an invisible condition, please don’t let concerns of embarrassment or judgement hold you back. Try thinking about how you’d feel if it were your friend or loved one, rather than yourself, in the position of holding a ‘can’t wait’ card or requiring a disabled toilet. You’d want them to make use of them and not feel so anxious or embarrassed that they feel as though they can’t. And for the love of mercy, I hope there’s someone out there reading this that can magic up some more public toilets because they’re in short supply!



InvisiblyMe – https://invisiblyme.com/






I’m Caz - Blogger, writer, campaigner, tea drinker & over-thinker. I live with a stoma and invisible illnesses, including connective tissue disease, pernicious anaemia, osteopenia and fibromyalgia, making me passionate about raising awareness and understanding of physical and mental conditions. Nice to meet you! I run the blog InvisiblyMe : https://invisiblyme.com

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