Invisible Conditions : The Terrors of Public Toilets

A photo of me showing the stoma bag and the overlaid text of the blog post title.

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. 

A photo of a public toilet with three figure icons: man, woman and a wheelchair. Underneath it says : 'Accessible toilet. Not every disability is visible'.
Making visible the invisible conditions. I think more accessible public toilets should have such signage.

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.

A photograph of me standing, wearing a black top and blue jeans, with my top up a little to show my stoma bag. The stoma bag has a bright red Hello Kitty design bag cover on.
Never too old for Hello Kitty!

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! 

If you haven’t already, I’d highly recommend Gemma’s Wheel Escapades blog covering life on wheels, you won’t regret it.

Have you had any positive / negative experiences of public or disabled loos? Do you think there needs to be more awareness over invisible conditions?

Caz  ♥

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56 Comments

  1. March 10, 2020 / 5:12 pm

    More genius from Caz.- used share buttons, a 1st for me 🙂

    • March 10, 2020 / 5:53 pm

      I am guilty of making assumptions myself. I will try to be more thoughtful in the future.
      Hopefully your week is going well, Caz xx.

      • March 13, 2020 / 2:47 pm

        da-AL – Thank you lovely, much appreciated!  ♥
        Viola – I always used to but it’s only since having problems myself that I’ve come to think about it, it’s just natural to make assumptions. Being more mindful can’t hurt – thanks for the comment lovely.

        I hope you both have a restful weekend.xx

  2. March 10, 2020 / 5:34 pm

    Raising awareness is always a good thing. We may not want to talk about the 2 Ps, but we still need to go. I will be mindful from now on. Hey, you got one convert. Thanks for the reminder Caz.

    • March 13, 2020 / 2:48 pm

      Absolutely. It’s one of those embarrassing and taboo areas that won’t make any progress if we don’t face it head on and talk about it. Hey, it’s amazing if I can get even one person to be a tiny bit more aware of what’s not visible then I’ll be happy! Thanks, Darnell 😊 x

  3. March 10, 2020 / 5:50 pm

    There are always horrible restroom stories. No matter where you are and no matter your medical condition. I can’t imagine what you go through. I’d let you go before me.

    Have a fabulous day, Caz. Big hug. ♥

    • March 13, 2020 / 2:50 pm

      You’re right, there are always going to be public loo horror stories full stop. I imagine things are a lot better these days than even 10 years ago, let alone 50, so hopefully improvements will continue, slowly but surely. Thanks for the comment, Sandee! xx

  4. March 10, 2020 / 6:14 pm

    Caz, I am ridiculously proud of you!! I adore your courage, bravery and boldness to say “you need to hear this!” It really is admirable, I think. This is a critical message people really do need to hear. Empathy is a character trait long lost in too many cultures. Awareness posts like yours, I pray, will help bring some of it back!

    Just like you, I admit to having my moments in life where I was a clueless jerk and didn’t give people the benefit of the doubt. Chronic, invisible illness DOES change a whole lot. It’s a hard learned lesson too I’m afraid. Hopefully, those who will never experience invisible illness in their lifetimes can still read this and be informed. Sometimes if we know better, we do better. That’s the dream anyway!

    I’ll admit my friend, I had to laugh at the “It’s not just any toilet – it’s a good toilet” section. You turned a tricky subject into a charming tale of what we need to see change. I love it! And I agree completely with you, we need more GOOD, clean toilets that provide the needs of all sorts of folks. For Heaven’s sake – even just to find one within a mile of where we might be would be helpful!

    You’ve done it again Caz; a brilliantly written post on a subject of great importance. Love you! ♥

    • March 13, 2020 / 3:30 pm

      We’re definitely in need of more public toilets! And you’re right, a little empathy could go a long way, couldn’t it? Nobody is perfect, we all make assumptions, it’s just about thinking twice in future before ever acting on them. That consideration for what’s not visible applies to other things too, like if someone’s ‘off’ with you then consider whether they’ve got stress in other areas of their life. But the main thing I think with stuff like the toilet issue is not making someone else feel awkward or ashamed, no matter what you think. A bit like the whole ‘if you have nothing nice to say then say nothing at all’. Thank your the wonderful comment, Holly ♥

  5. March 10, 2020 / 7:49 pm

    First of all I want to say you’re an incredible and amazing woman. Speaking up about an issue that is embarrassing for even those who are healthy is worthy of an award. I’m positive that you’re helping a lot of people who are living in silence with their symptoms, by raising awareness about an issue that mostly we don’t think about, but are quick to judge. Thank you Caz for your bravery. Another great blog post. <3

    • March 13, 2020 / 4:28 pm

      Aww thank you so much, Masha. I’m glad you thought the post was okay. It’s not easy to talk about these things but I do think it’s important. I got a little more courage when I first had my stoma from reading about other people and their experiences, so hopefully this can do similar for others. I hope you have a lovely weekend  ♥ xx

  6. March 10, 2020 / 8:27 pm

    Oh wow this hits the button or the jackpot! We live near a beach or beaches….During the summer months the holiday makers come down. Plenty of toilets however its for the campers, you have to have the key or numbers. How many times do you have to get caught out. Its not nice for those of us who have conditions that could at any time cause you to have to “run” to the toilet. I have shared on twitter, pinterest and my personal fb page.

    • March 13, 2020 / 4:30 pm

      That’s awful, it’s not good not having easily accessible loos around at all. There really should be more thought into it because we all need to use them, it’s not like a luxury facility or something that’s ‘nice to have’ nearby. It’s vital! I’m really pleased you liked the post, Bree, and thank you so much for sharing!  ♥ xx

  7. March 10, 2020 / 8:54 pm

    I think you’ll always find at least one non understanding clown wherever you go. Such a shame, some people can be just downright horrible.

    • March 13, 2020 / 5:02 pm

      Very true, Trev. It’s good to get that perspective because you can’t avoid every idiot or meanie in life. x

  8. Karen
    March 10, 2020 / 10:28 pm

    Just want to say that face is so not radio! Beautiful and brave.

    • March 13, 2020 / 5:08 pm

      Sadly my voice isn’t for radio either though, usually rather croaky and I sound even younger than I look sometimes 😂 Thanks, Karen, really appreciate your kindness.xx

  9. March 11, 2020 / 5:28 am

    Wow, Caz, I’d like to say so much, but am a bit flabbergasted. Holy sh*t; I didn’t know this was such a problem in GB. Here, particularly where I live, there are ample loos in the malls and streets of shopping areas. Darn, this must be rectified; people (all people) are in need of loos – and ones in good condition with plenty of loo paper, which, in general, I find to be true for me here.

    Lastly, Caz: Use the disabled toilet when needed. Good grief, girl; you deserve it. That’s what it is for!!!
    xoxoxoxoxoxo
    P.S. Your pic is so darn cute!!! ❤

    • March 13, 2020 / 5:15 pm

      It’s great there are plenty of toilets over there, Carolyn. That’s the way it should be. I know we’re still very lucky in a Western society as many in other parts of the world don’t get clean water let alone proper public toilets, but still.. we know the situation could be better than it is, so it’s hard to see why it isn’t. Everyone uses a loo, it’s not a luxury convenience that’s simply nice to have.

      Thank you for such an awesome comment lovely! It gives me a little more confidence using a disabled loo and I hope this can encourage others in a similar position, too.

      Have a lovely weekend 🌷xx

  10. March 11, 2020 / 11:44 am

    Haha, “face for radio”! I always say that about myself. Don’t be hard on yourself, though. You’re prettier than a lot of the people I meet in an average day.

    The situation you describe is horrible, though. It’s like the attendant was putting you in a position where you were forced to tell everybody around about your disability whether or not you were comfortable with it, or to keep quiet and let someone else go first even though you were about to unleash Niagara. That doesn’t often happen here in the states, and it might be rare where you are too… as much as Americans have a reputation for being loud-mouthed jerks we usually ignore what people do and then just talk about them behind their backs later. Lol

    • March 14, 2020 / 3:01 pm

      Naw, thanks! So my days of being a TV celebrity are still possible?

      You’re right about that position of feeling you need to divulge personal stuff when you don’t want to. I’ve been put in that position in the chemist before because of a prescription mix up, and the woman working there (not very nice at the best of times) started calling out ‘yes well here we have a stoma bag box for your stoma bags, and this stoma belt, the stoma belt came to us’, really quite loudly. That sort of stuff isn’t very nice, and although I could handle it, I don’t imagine those that are even more embarrassed or shy would appreciate it. Thanks for the comment – hope you’re having yourself a good weekend!

  11. March 11, 2020 / 12:29 pm

    Well done and thank you for writing this Gemma (Thanks for sharing Caz). I too have an invisible illness (Transverse Myelitis) which, amongst other things, causes bowel and bladder problems. I only know whet it’s time to go right at the last seconds – I have no internal sensation (in lots of areas) so I always have to check out where the toilets are when I’m going somewhere. And trust me, I don’t like the table nearest the bathrooms cos of the obvious wafts of poo and pee when the doors swing back and forth. But I must be able to get there within say 10 seconds.

    Yes, I’ve had the looks, the tuts, sighs and downright rude comments when I’ve gone to use the disabled toilet – do they really want to see me pee or poo myself right in front of them. And what would they think if I did – that I’m drunk or just some dirty lady who allows myself to do this in public.

    I’ve had soooo many terribly public accidents – sometimes I can’t poo (once for up to 28 days) for long periods so when I do go – well, you can only imagine. I carry ‘I can’t wait’ and an MS (Multiple Sclerosis as my illness is very similar) card but I’ve never been able to get them out of my bag quick enough to use them. Trust me, I’d have no issue showing them to anyone, despite my anxieties.

    This disorder renders me physically disabled too but I can’t stay indoors forever so I have to carry extra clothes and toiletries around with me if and when I do venture out. So I feel your pain, Gemma. Again thank you for writing this – it may make some people a bit more understanding and show some compassion.

    Caz x

    • March 14, 2020 / 3:06 pm

      I’m glad you liked my post, but sorry that you could relate to some of the experiences I’ve had. Needing a loo when you’re out and about can definitely be an anxiety-inducing challenge, so it can pay to be prepared and think ahead (providing the toilets aren’t shut when you get there!) It’s awful you’ve had such looks and comments, that’s the crux with invisible conditions when you meet those that can’t seem to keep their thoughts to themselves. From one Caz to another, I hope you can do whatever you need to do to be able to get out and about every now and then, and to use the facilities as required, remembering that any responses from others merely show their ignorance and shouldn’t be given a second thought. Those are the people, the ones that actually act on their assumptions in order to hurt or embarrass someone else, that wouldn’t last a day in your shoes or mine. A little compassion could go a long way.

      Thank you for sharing some of your story & experiences too ♥ xx

  12. March 11, 2020 / 7:00 pm

    Thanks for the reminder not to judge others or to assume things we don’t know. If someone is in line for the accessible toilet, it’s not our place to tell them to step aside. No one should be forced to talk about personal issues with a stranger, although it’s certainly okay for them to mention it if they want to. Thanks also for taking some of the stigma away!

    • March 14, 2020 / 3:30 pm

      I think it’s human to judge but it’s acting on it just to make someone else embarrassed or awkward or hurt that’s got to stop. You’re right, you shouldn’t be forced to talk about personal stuff with anyone if you don’t want to. Perhaps if someone really has a problem there’s a better way of doing it, like ‘excuse me, do you need this one?’ with a smile on your face but really there shouldn’t be any need. Thank you for the great comment, Ann – I hope you’re having a relaxing weekend xx

  13. March 12, 2020 / 5:43 pm

    Hmmm Wheelescapades 😂
    Thanks again for being a great guest. Raising awareness that we can all be a little to quick to judge.

    • March 14, 2020 / 3:33 pm

      Why the laughing face, have I written something wrong that I just can’t see? 😂
      The blog swap is a great idea, so thank you for featuring me. I’m really looking forward to your post but there’s no pressure at all, just whenever you have time to put something together. xx

      • March 21, 2020 / 9:23 pm

        Hehe 😂
        I’m getting it written!
        By the way, if it seems I ignore you sometimes it’s because I’m not getting alerted when you reply to my comments.

  14. March 12, 2020 / 11:36 pm

    I wish I could just tell you to F all that, head up. But it’s not that easy and I know it. It’s hard to take a disabled parking spot or even to use an elevator. I don’t have your condition but my BF did, and she always had to be hyper aware of where washrooms were because an emergency could happen literally any time. You shouldn’t have to justify yourself to anyone. Thanks for writing about this so people can at least remember that other disabilities exist.

    • March 14, 2020 / 3:36 pm

      Sometimes having that reminder for the ‘fuck it’ mentality can be a really good thing; it’s not always that easy but any sort of shitty comments or responses shouldn’t get a second thought. I’m sorry your friend had to have that anxiety with going out over what facilities are available. Toilets in some places seem to be a luxury commodity that are hard to find! Thank you for the comment, Jay, and the reminder that we shouldn’t have to justify ourselves to anyone. xx

  15. March 13, 2020 / 10:16 am

    There definitely needs to be more awareness, less judging, and more toilets!!! I’ve used the disabled toilets before when I can’t wait. Though never when people are waiting.

    I was in the middle of writing this and I can’t recall what I was saying…

    Love, light, and glitter

    • March 14, 2020 / 3:40 pm

      Absolutely, you’ve summed that up so well – more awareness, less judging & more toilets! It seems so simple yet in reality it seems we’re a long way off. Thanks for the comment, Eliza xx

  16. March 14, 2020 / 12:39 pm

    Oh GOOD LORD and Bless Your heart. Man. That sucks completely. I’m glad You wrote this. I’m sorry You have to go through this. I know that’s not why You wrote this,…but I truly am. And You ARE BEAUTIFUL and DO NOT have a face for radio!!! Thanks for the enlightenment and I hope this ripples out and helps people understand. We could all use to be less judgey about EVERYTHING, period. Huge hugs, Cheers and Rock On!!! 🤗❤️😊

    • March 14, 2020 / 4:04 pm

      Aww that’s such a lovely comment, thank you! And yes, you are so right – a little less judgement in general would be awesome, I hope that ripple effect continues and bit by bit maybe there would be less judgement and more compassion. Thank you again for such an awesome comment. I hope you’re having a restful weekend so far  ♥ xx

  17. Mrs. Ram Jam
    March 14, 2020 / 5:06 pm

    You tell ‘em! So true.

    • March 14, 2020 / 5:40 pm

      Thanks lovely! 😊 We shouldn’t care what others thing/say/do, but it can hurt and I hate to think some people are too reluctant to do use a can’t wait card or disabled toilet when they need to.xx

  18. March 15, 2020 / 12:58 am

    Lulu: “We like that the sign says ‘not all disabilities are visible’.”
    Charlee: “And we like that you stood up for yourself on the train.”
    Chaplin: “Even though we wish you didn’t have to!”

    • March 15, 2020 / 4:56 pm

      Naww thanks, guys  ♥ And I agree, the sign is pretty cool. I hope you’re looking after your dada! x

  19. March 15, 2020 / 10:52 am

    It’s such a shame that you were kind of forced to tell strangers on a train why you really needed to use that toilet.

    You are doing an amazing thing for other people by speaking out and bringing awareness to this everyday problem. Many people look ‘fine’, but they’re not. People need to start accepting that problems aren’t always visible.

    • March 15, 2020 / 4:57 pm

      It’s not ideal when you’re put in the position of explaining yourself around those you may not be comfortable with doing so. I’ve had a bad experience along those lines with a very rude pharmacist in our local pharmacy. Thanks for the comment, Liz – Hopefully every little helps with increasing awareness  ♥ xx

  20. Abbigail Elijah
    March 16, 2020 / 8:57 am

    Thank you for being a voice for many and I think that sign would be a Godsend. I have a neuromodulator pacemaker for my bladder and because of the state of toilets, I would turn it off so I didn’t need to go ……provoking bladder infections – because like you the “stare” you get of judgement is rather humiliating and coming to turns with a disability is hard enough to accept yourself than to try explain to others.
    Thank you for sharing!
    ABBI-E

    • March 19, 2020 / 4:46 pm

      I’m glad you liked the post, thank you. Oh no, it’s awful you’ve felt the need to turn the neuromod pacemaker off so as to not have to use the public loos. This is the sort of thing that makes me so angry – you have every right to use whatever damn toilet you need, and I hate that you feel awkward or embarrassed or simply that you’re not able or comfortable enough to. You’re right, it’s not easy. You don’t owe anyone an explanation. Maybe think about what you’d tell a loved one if they were in your position.. they’d want you to use the disabled toilet, not give a damn what anyone says/does/looks at you, and politely but firmly tell them you have a disability if necessary. Ignorance is a social problem but I hope, bit by bit, it can be reduced and there will be more awareness of disabilities and hidden illnesses and a little more compassion  ♥ xx

  21. March 16, 2020 / 2:32 pm

    Hey! Elected you for the Real Neat Blog Award…

    • March 19, 2020 / 4:32 pm

      Oooh yes I saw that, thank you! x

  22. March 19, 2020 / 2:57 pm

    Caz, I am reading this with a smile and tears.
    First, you are a knockout (bag and all).
    I so admire your courage. You are a special woman.
    Yes, some disabilites aren’t visible.
    According to U.S. government I am disability. But people on the street don’t see it.
    Great post.
    Be well. You are an inpsiration.

    • March 19, 2020 / 4:35 pm

      That is such a beautiful comment. Thank you so much, it’s truly appreciated. I don’t see myself as an inspiration in the slightest. I see how much I struggle, how hard it is for me to turn around negativity and be positive, but I do try. Every day. That’s all any of us can do. I hope you’re holding up okay. Keep writing your incredible poetry, it’s like sunlike on a dark and difficult day. A balm for the soul  ♥ x

  23. March 21, 2020 / 7:37 am

    Well done you for writing this post and sharing your views and experiences. I agree – there aren’t enough public toilets, and of those that exist, they are often not very clean or you have to pay to use them. And sod’s saw you don’t have a 20p coin at the time you desperately need it. I’ve learned a lot from reading this post, so thank you Caz.

    • March 25, 2020 / 1:57 pm

      I thought a lot of train stations were doing away with the 20p thing, but the odd loos that exist with a fee should have some way of alternative payment. Whether that’s debit card/phone to scan, or maybe you can do a little dance to earn your toilet entry. And we shouldn’t have to require a hiking pole, map and food supplies to trek to find a public loo! Thanks for the comment, Alice  ♥ x

  24. March 24, 2020 / 10:31 pm

    So true all disabilities are not visible and one should not make assumptions. The points you list are so well covered,Good share Caz.

    • March 25, 2020 / 4:47 pm

      I’m glad you liked the post. Thanks, Nisha! 😊 x

  25. March 25, 2020 / 1:23 pm

    Thank you so much for sharing this, this is such a fantastic post! I have IBS and I think there’s far too much stigma around poo and pee, especially when it comes to chronic illnesses.

    My Mum has Ulcerative Colitis and has been told she can get a can’t wait card but I know she’s reluctant because having one STILL isn’t always an excuse for some people. I remember a story a few years back where a 13 year old girl with IBD was refused access to a shop toilet despite having a can’t wait card and not only is it humiliating for the person with the chronic condition it’s just plain rude.

    I have a real pet-peeve when it comes to door yankers in public toilets too! The single toilet at my work has a ‘vacant/engaged’ lock on the door and there’s a fan that comes on when you switch the light on so it’s pretty obvious when someone’s in there – but not to the lads in the office above us who will freely yank the door so hard that it’s ripped the lock off on multiple occasions 🤦‍♀️

    Thanks for sharing such an honest post! x

    • March 25, 2020 / 4:51 pm

      There really is too much stigma, and not enough appreciation for conditions that aren’t obvious when you simply look at someone. The implications of these sorts of things, whether it’s IBS, UC, chronic constipation, stoma etc. It has a real world impact physically and emotionally when you can’t use toilets as required when you’re out. That poor girl, only 13 and experiences like that could put her off for a long time. Wow, what do people expect when they try yanking open a door and popping locks when someone’s in there? That the other person is magically going to disappear?! Thank you for the great comment Ami and for sharing your thoughts, and I’m really glad you liked the post  ♥ xx

  26. April 5, 2020 / 10:18 pm

    Wow, thank you for sharing this! I am admittedly and shamefully naive to the issue of “invisible disabilities” and public toilets. I’m not naive to the fact of invisible disabilities however I’ve not heard them referred to as such. While not “physical” per se I have anxiety so I know a little tiny bit about struggling in ways that no one else can see. Not to compare but to share, I get socially anxious sometimes and will hold my pee before I go to the bathroom (assuming I can) if there are things that make me nervous about using the bathroom. Say it’s too close to the other people and I’m afraid if I have to…fart… and someone’s outside the door… That’s probably not that far off from how a lot of people feel – able and disabled – but if I get caught up obsessing about how it could go wrong, I will hold until I’m in pain. I can only imagine how this would feel to be disabled and thereby anxious because no part of using the bathroom is simple for you.

    That said I have no knowledge of what it’s like to have a physical disability or have a stoma. I really appreciate your courage in sharing this. It comes at a time when I’m re-examining how judgmental I may or may not be. Honestly I can see myself looking at someone sideways who rushes to cut the bathroom line but doesn’t appear any worse off than the rest of us. It’s possible and even likely I would at least wonder if the person was really in some kind of “trouble” (too much coffee anyone?), but I would not have had the knowledge to think from this detailed of a perspective. This post will forever change how I see things. Thank you.

    • May 3, 2020 / 4:18 pm

      Admitting you don’t know much about invisible conditions is something I’ve had to do too, and I have them! Nothing shameful about not knowing at all, and if something I write can raise an issue to just one person then I will be very happy. And anxiety definitely counts. Given my high anxiety I can say that can certainly be an issue in many ways, many of which those without anxiety wouldn’t realise. You’re right, toilets are not much fun. I used to be too anxious to pee in public at all, but it’s only through losing every shred of dignity through horrible hospital tests, gowns, public stoma problems, and everything else that I’ve become more confident with it, which has battled down my anxiety a little as I can care a little less. I hope you can prep yourself a little mentally by telling yourself it doesn’t matter what anyone else things, fuck it, and know that it’s not worth you getting so wound up over and struggling physically by not going to the loo when you need to. Don’t get me wrong, I still get the same worries I used to, but sometimes I can get into the ‘don’t give a fuck’ mindset just enough to make it more doable, if that makes any sense.

      I’m so glad this post could ‘enlighten’ you (for lack of a better word) to things you wouldn’t necessarily have known or thought about before. And thank you for sharing your experience because that matters just as much. It’s appreciated, so thank you for commenting  ♥

  27. April 20, 2020 / 12:06 am

    thanks for writing this. i am trying to learn more about ‘physical’ chronic illnesses, since personally i only suffer from chronic mental health conditions (i use inverted commas because i’m not sure of the right terminology here? sorry about that) when i came across your blog! thanks for writing about all sorts of experiences on here, i’ve been having a good old scroll 🙂

    • May 3, 2020 / 4:19 pm

      A lot has been new to me since getting a stoma and being chronically ill. The mental side of things I’ve got a decent grasp of, both objectively and subjectively from my own experience. Being more aware and learning more is a great thing whether it’s something you personally experience or not, and I’m glad you liked the post. Thank you for letting me know and for leaving a great comment, Rosie  ♥ xx

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