Living with a stoma brings its own set of challenges, but one thing I didn’t expect was the constant anxiety I feel when simply leaving the house. You see, when you have a stoma, something as basic as going shopping or meeting friends can quickly turn into a stress-filled adventure. And it’s not the sort of adventure with treasure at the end more like, “Will there be a toilet nearby? Will I be judged for using the disabled loo?” kind of adventure. Fun.
The Constant Hunt for Toilets
Knowing the location of the nearest toilet is essential for me. I don’t leave home without mentally mapping out every available bathroom between your house and your destination. It’s like developing a sixth sense for loos. However, public toilets are not as common or as reliable as you’d think. And that’s where the anxiety can start.
Will there be a toilet where I’m going? Will it be open? Clean? Accessible? These are the questions that float around my head every time I step out. I could be out shopping, but instead of browsing clothes racks, I’m quietly scanning for the nearest restroom, just in case. It’s exhausting, and it really takes the joy out of things.
And the worst part? That constant, nagging worry of, “What if I leak and there’s no suitable toilet around?” It’s like trying to enjoy a day out while carrying a ticking time bomb, hoping it doesn’t go off at the worst possible moment.
The Fear of Being Questioned
As if the fear of not finding a toilet wasn’t enough, there’s also the anxiety of being judged, particularly when I need to use a disabled loo. I don’t have any visible signs of disability, which seems to make some people think it’s their duty to play “toilet police.”
And let me tell you, nothing ramps up your anxiety like being approached by a stranger who questions why you are using a disabled toilet when you “look fine.” I’ve had more than one run-in with a well-meaning individual who’s given me the side-eye or flat-out asked why I’m using the facilities, and that awkward confrontation never gets easier.
(I hate confrontation and if I am honest, unless my bag leaks, I will always use the women’s toilets).
The thing is that the loo is the one place where I need to feel comfortable and safe, but instead, I find myself preparing for a potential confrontation every time I head towards those disabled loos. It is like I have to justify my existence, and my stoma, just to pee in peace!
Planning Every Outing Like a Military Operation
Because of this constant anxiety, every outing requires a level of planning that most people wouldn’t have to do. I have to think about how long I will be out, where the toilets are, how far I’ll be from home, and whether I can manage the anxiety if I get approached or if something goes wrong with my stoma bag. (I bring along a little “stoma kit” with extra supplies, just in case). CliniMed offer a range of stoma accessories to help make bag changes quicker and easier as well as helping to keep your bag in place.
It is not just popping out for a quick trip, every outing becomes a strategic operation. It’s mentally draining, and sometimes, I’ll be honest, it’s easier to just stay home. But that’s not exactly living, is it?
The Social Anxiety: What Will People Think?
Another layer to this anxiety is the fear of what others will think. When you’re out with friends or family, you don’t want to make a big deal about needing to use the loo or worrying about your stoma. You don’t want to be that person who is always saying, “Hang on, I need to find a toilet.” But sometimes, you don’t have a choice. And that pressure to act “normal” can make the anxiety even worse.
I try to remind myself that most people won’t notice, or if they do, they won’t care. But in the moment, it can feel like all eyes are on you, the person with the invisible disability who is desperately trying not to draw attention to themselves.
How I Manage It: Coping With Stoma Anxiety
I would love to tell you that I have got this all figured out, but let’s be real, some days are better than others. On good days, I can manage my anxiety with a bit of preparation and a whole lot of self-talk. I remind myself that it is okay to take up space, that I have every right to use the facilities I need, and that most people aren’t judging me.
On the harder days, I lean on my support system. Tim, my husband. He helps me navigate the trickier moments, and sometimes just having him there makes all the difference. It is like having a silent cheerleader, reminding me that I’m not in this alone.
What I have learnt over time is that the best way to manage stoma anxiety is to talk about it. The more we share our experiences, the more we raise awareness, and the less isolated we feel.
Invisible disabilities, like having a stoma, don’t get enough attention. But the more we open up, the more people will understand.
Moving Forward: One Step at a Time
Living with a stoma can be anxiety-inducing, especially when you are out and about. Whether it is the fear of being approached or the constant worry of finding a toilet, it’s a lot to carry with you. But with time, patience, and a bit of humour, it’s possible to manage.
If you’ve ever seen someone in a disabled toilet who doesn’t “look disabled,” give them the benefit of the doubt. There’s a lot going on beneath the surface, and trust me, they’re probably just trying to get through the day with a little less stress… just like the rest of us!
It’s Good to Talk
Not everyone experiences anxiety because of their stoma but if you are you can contact the following organisations for support:
Article by Anita Brown
About the author
Hi I’m Anita Brown. Diagnosed with terminal small cell bladder cancer in April 2016. I've had palliative chemo and radiotherapy, and a radical cystectomy and urostomy in August 2017.
I've had problems with my bladder all my life, from incontinence, to kidney and bladder stones, and now cancer. I would like to share some of my experiences - follow me on Twitter.