I’ve recently shared a guest post with the lovely Gemma at Wheel Escapades, which you can find here, as part of a blog swap. It’s been a pleasure to feature on her blog so I’m sharing my post here, too. Prepare yourselves for toilet-themed chatter, folks.
When you gotta go, you gotta go. Everyone goes, everyone uses a toilet and some go in bags. So what? Why is it still so embarrassing to talk about it? And why is there still such a lack of thought for invisible conditions? And yes, I’ll admit I’m embarrassed writing about it. After all, I did keep my stomach ‘issues’ before getting a stoma as close to a secret as possible for nearly 10 years. Today it’s time to tackle the sh*tshow of public toilets (pun intended).
Not All Disabilities Are Visible
It’s not an easy topic to talk or write about because the Ps are still pretty taboo, 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 conditions these days, but there’s a long way to go to readjust commonly held misconceptions and socially ingrained judgemental assumptions.
I have a stoma and an inconvenient bladder. Th latter is temperamental and frustrating, resulting from damage caused by my first surgery. I don’t have a suitable response to anyone that questions the pee issues. I don’t have a specific condition that I can whip out, and I don’t think that nerve damage, a stubborn bladder and the ability to wee for England will cut it. With my stoma, well, you can’t ‘see’ that either. On the outside I look fine, albeit dishevelled and tired. 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.
I have a ‘can’t wait’ card. It probably should probably be a ‘I can’t use this’ card because actually using it is something I’m just not comfortable with doing. If you’re shy or have anxiety, you’d probably rather not attract attention to yourself, either. 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 so I could let someone else in need go first.
It Takes The Pee!
Getting to the loo when you’re out and about can be a test of resilience in itself. Physically getting yourself to one regularly throughout your outing is a test of sheer will. Add to that waiting in queues or having to hijack the disabled loo and we’re looking at a toilet-shaped Everest to climb.
Considering all of us need to use them, why are public toilets in such short supply? And why, when there are so many with illnesses and disabilities, are disabled toilets often a nightmare? Those with invisible conditions face another hurdle: ignorance and lack of awareness.
I’m no angel and I’ve not consistently considered invisible conditions my whole life. I’m guilty of judging, years ago before I developed health problems, but only ever in my head. I’d never give a look or comment, because I wouldn’t want to cause offence, especially if I were wrong. I think you’re all the more aware to be mindful, compassionate and to think outside of what you can see when you have an invisible condition yourself.
When You’re a Head-turner – My Experiences
I’m no model and I’ve got a face for radio, so that’s not what turns heads. I’ve never pushed in a 10-person queue line with my ‘can’t wait’ card either, no matter how much I may have needed to. But I have needed to use the disabled toilet, and that can turn heads. I’ve had comments and 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.
I remember a time in a train station when I needed the disability-friendly loo because I had a stoma leak and, well, I figured changing the bag before it fell off would be a good idea. There was a woman in front (who also looked ‘fine’) and I patiently waited behind. A woman comes up behind me who probably had about 30 years on me and she seemed rather more spritely than I as she jogged up to the toilet.
A station attendant comes up. I translated the look of incredulity on her face and what she was thinking. That I was an impatient so-and-so who was trying to push her way to the disabled loo so she didn’t have to wait in the crazy long queue for the regular toilets. “Mam, maybe you should let this poor lady behind you go first because she needs to use this toilet as it’s for those with disabilities only”. I noticed then the lady behind had a stick, not that she’d used it when jogging up, which is fine. But as I was stood there, embarrassed as hell not just by a bag of poop inching its way off my skin, but by feeling reprimanded, I felt totally ashamed.
I was struggling to stand with my hips on fire, my whole body screaming and was bone-deep exhausted, so not in the best of moods. That day I did stand up for myself, in a rather embarrassed voice to say “Please, I need this toilet, I’ve got a stoma”. She attendant looked shocked, as did the lady behind me. She just said “oh right, of course, ummm, sorry, go ahead”. Permission granted.
The times I’ve used a disabled loo have been infrequent, but each time I’ve had to dig deep for the courage to do so. I mentally catalogue my repertoire of responses for any looks or comments, but what usually happens is that I mumble apologies, shuffle off, maybe have a little cry and hurry to find another toilet. When you really gotta go, it feels like a mile long expedition and the the longest walk of shame of your life.
I’ve not had endless bad experiences, but there have been a few. I do 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 and awful? The crux of the problem is lack of consideration for what can’t be seen. It’s a human thing to do to judge and make assumptions. Sometimes you’re right. Sometimes you’re not. But it’s crappy to act on those assumptions when it could cause offence, shame and humiliation.
Toileting With A Stoma
Generally speaking, I don’t need a disabled toilet. Those with stomas, unless they have other disabilities, are likely okay with a normal toilet to empty the bag. But the toilet should be half decent with a seat otherwise things get tricky. It’s changing the bag that’s trickier still in a standard toilet because you need more space, a little water, somewhere to put your 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. That’s when a disabled toilet is required.
Another thing that really gets to me is feeling rushed. I panic, I stress, 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 get your ass outta there.
It’s Not Just Any Toilet, It’s A Good Toilet
Girl Looking For A Loo – clean & just the right height with a GSOTP (good supply of toilet paper). A few specifics :
Must be clean shaven.Must be clean. Surely we all want a clean loo. Must be rich. Must have a rich supply of toilet paper. We’re not on ration here and it’s disturbing to wonder what people do without any loo roll. A toilet seat.This is particularly important for those with stoma bags that sit to empty the bag. You don’t want to scooch back on a broken or revolting seat. It’s not cool.
- A working lock. I get flashbacks of awful toilet-related incidents involving broken locks and opening doors. Apparently propping your bags against the door or even using the full muscular strength in your legs is not enough to stop some people from forcing the door open and then acting surprised to see someone in there.
- 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 seats. It’s a frustrating game of chance. Strange but true and I can’t explain it, but it’s not some random diva demand for a precise toilet height.
Polite Pee Etiquette
If you push the toilet stall door once and it doesn’t budge, take the hint: someone’s probably in there. Don’t keep pushing and trying to jiggle the lock. You won’t hear the murmured “sorry, someone’s in here” from the now-nervous pee-r over your constant rattling and sighs of exasperation.
Sometimes it’s obvious. There’s a long queue in the regular toilet and someone hurries over to the disabled one so they don’t have to wait because Happy Hour down the pub is about to start. Sometimes it’s not so obvious. Before you judge or comment, consider whether there may be more than meets this eye with this otherwise ‘fine’ looking guy or gal.
If you want to say something, say it to the intended recipient, because this isn’t high school. Better yet, keep it to yourself. Don’t go gossiping and making someone who likely already feels embarrassed feel more self-conscious and awful because they’ve had to use a ‘can’t wait’ toilet card or have had to squeeze themselves into the disabled loo despite looking ‘fine’.
Why Write This?
This 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. I just want to raise a little awareness so maybe people think twice before giving a look or verbal criticism. Think of what may be unseen underneath the ‘fine and healthy’ looking exterior. For anyone reading this with an invisible condition, please don’t let these sorts of concerns of judgement or embarrassment get in the way. Think 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 waiting by a disabled loo. You’d want them to make use of them and not feel so anxious or embarrassed or ashamed that they feel they can’t.
And for the love of mercy, I hope there’s a magician out there who can whip up some extra public toilets because there are too few out there!
Have you had any positive / negative experiences of public or disabled loos? Do you think there needs to be more awareness over invisible conditions?