Accessible Toilets, Musings

Talking Toilets With Invisibly Me – Guest Post

We are all guilty of having given the odd inward eye roll when we see someone walking out of the accessible toilets. I know I have, briefly doubting their need for using them, silently accusing them of just not wanting to queue, skipping the wait, but then stopping myself. Feeling ashamed. I’m a bad person.

I love a good toilet rant. Too often coming across inaccessible bathrooms. Those the size of a cupboard, those that are actually used as a cupboard.

Accessible toilets aren’t just for those of us with wheels though.

I’ve invited my blogging buddy Caz from InvisiblyMe to talk of her bathroom experiences.

Invisible Illness : The Terrors of Public Toilets

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. The 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.

A photo of Caz standing in the street by a river. She has red hair, a green and black top, black cardigan, denim shorts and thick black tights. You can not tell Caz has any disability.
Caz – InvisiblyMe

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”. The 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 magic in some extra public toilets because there are too few out there!



The Invisibly Me logo. A pulse line with the text Invisibly Me, Life With A Chronic, Invisible Illness. There is a red heart at the end.

You can follow Caz on her blog InvisiblyMe, on Facebook, Twitter and Instagram.

Thanks to Caz for baring all and reminding us all that assumptions are never a good thing. Please never feel embarrassed to use your ‘I can’t wait’ card.

Here’s to better toilet facilities everywhere for everyone!

Title text, Talking Toilets With Invisibly Me - Guest Post place over a photo of Caz with red hair, hand on her hips and revealing her tummy with stoma bag attached. Caz is wearing a black long sleeve top and blue jeans.

Title text, Talking Toilets With Invisibly Me - Guest Post on the right half of image with white background. The left half of images is a photo of Caz with red hair and a black lace top. Caz is lifting her top to reveal her stoma bag which has a Hello Kitty cover.

26 thoughts on “Talking Toilets With Invisibly Me – Guest Post”

  1. Well done and thank you for writing this Gemma (I got this from the other Caz at Invisibly me). 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

    Liked by 1 person

    1. Hopefully in time people will realise that not all disabilities are visible, or obvious. It shouldn’t take time, but then people baffle me too and my disability is very obvious! Given my wheelchair.

      Thank you for sharing your experiences and frustrations. It will raise awareness and help people understand.

      It’s great that Caz (the other one) has felt able to share, and done a good job of it.

      Liked by 1 person

    2. how would other people cope if they was YOU OR MYSELF .i have BOTH Bladder and Bowel problems
      very very OFTEN I AM WET/SHITTY AT THE SAME TIME ..people Stair Laugh call a very very Bad NAME
      Like Piss Pot Nappy Wearer .i am NOT afraid too say or talk about these EVERY DAY VERY EFFECTING
      ISSUES i cope by sitting down having a very good CRY and a Runny Snotty Nose ..very RUDE people are with THEIR COMMENTS ..what i find MOST is ok i have BOTH Bladder and Bowel problems .BUT IT IS …


      Liked by 1 person

      1. my blog.http;//
        i am co-Author of a book about disability and sex . can send you a link if you would like


        Liked by 1 person

  2. Absolutely Carol, I bet that’s been insightful! I never knew anyone with a stoma before I had mine, so the internet has been a haven to be able to find others and share experiences and, hopefully, raise a little awareness for others who may not know people ‘in real life’ (so to speak) with them. xx

    Liked by 1 person

  3. very very well done for talking .will help a lot of others . i do NOT have a Stoma .BUT I HAVE ..BOTH ..Bladder
    and Bowel problems .it is very very Wet and very very Shitty 7 days a week .people never see the every day effects .there views/judgements are very Snotty Nosed ..painful ..bloating very Nausea PEOPLE STAIR .
    how would they cope
    my blog,http;//

    Liked by 2 people

    1. I’m sorry you know what it’s like having your own bladder & bowel problems, Mark. You’re right, when it’s hidden from view people don’t realise, and they can’t understand what it’s like to live with. Snotty judgements or comments are borne from ignorance, they’re not a reflection on you. Thank you for sharing a little of what you have to go through, too, you’re not as alone as you may feel.

      Liked by 1 person

    1. You had a ‘wee’ bit of an argument, Liz? 😂
      Disabled toilets are a tricky one because yes, there are plenty of times people without a condition may opt for those rather than stand in the queue at the regular toilets, but unless it’s made blatantly obvious that’s what they’re doing then people should keep an open mind. Invisible conditions can be varied and just because someone ‘looks healthy’ certainly doesn’t mean that they are or that they don’t have hidden problems to content with. I think I would have had an argument on Facebook with that as well, Liz! xx

      Liked by 2 people

      1. Yep, just a wee one, Caz. lol

        If I remember correctly, it was a person with an invisible condition complaining about a ‘healthy man and son’ coming out of the disabled toilet. We have no idea the reason for using the disabled toilet, but we really can’t judge.

        Liked by 2 people

      2. A wee bit… only just got that sorry 😂
        Maybe the wheelchair sign that is used on many accessible toilets should be reconsidered? I have recently seen the odd sign outside loos saying ‘not all disabilities are visible’ which will hopefully make people more considerate.


  4. One of my friends has a stoma and she gets a lot stares and judgmental comments when she uses the disabled toilets. She is amazing when it comes to these situations but so many others struggle. Not all disabilities are visible. Thank you both for an amazing, post and spreading awareness 😊X

    Liked by 1 person

    1. People shouldn’t feel embarrassed or guilty to use the disabled toilet, even if the reason is invisible to the public.
      People are too quick to judge those they know nothing about. I’m sure I’ve probably done this myself. Hopefully awareness will gradually help.
      Thanks for stopping by.

      Liked by 1 person

    2. I’m sorry about your friend having to cop for judgements and comments, even staring is more than bad enough. It’s good she can deal with whatever comes her way well though. That gives all of us some hope that we can manage it and not let the words/actions of others make us feel too embarrassed to use disabled loos.
      Glad you liked the post, Georgina! xx

      Liked by 2 people

  5. I love that you talk, Gemma.. No holds barred and today it is toilets… I have 4 friends to date maybe 5(not)sure they are still away and not back here for a few weeks so for me.. Now. I understand but hands up I haven’t always… If this post makes even 5 people more aware then that is good…xx

    Liked by 2 people

    1. I think it is hard to under what we ourself hasn’t experienced or have knowledge of. It’s good to raise awareness though, so gradually more people will think before they jump to conclusions.


    2. To a fellow Carol – I only became more aware when I faced my own ‘tummy troubles’. I wasn’t always mindful of invisible conditions. I never commented or stared or anything like that, but I certainly wasn’t thinking of stomas or IBD or weak bladders or anything else for that matter. I think when you read about it or when you experience something for yourself, it just makes you that bit more mindful, which can only be a good thing 😊 xx

      Liked by 2 people

      1. I agree, Carol but also having friends with stomas who share which is good… makes you more aware… They have shared with me warts an all as they say… Which is good it takes away the taboo… 😀 Xx

        Liked by 2 people

      2. It’s definitely a case of you don’t know until you step in someone else’s shoes. Also, being part of a brilliant and diverse blogging community makes you consider and relate to those around you.

        Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.