What it’s like to Self Catheterise

It’s 12:45am as I sit down to write this on what has been a complete arsehole of a Monday. I’m tucked up under a blanket, with 90% of my thoughts preoccupied by 78,472 different thoughts which magically feel like they’ve swirled into one giant lump in my brain (fantastic compartmentalising brain, fucking fantastic), and the remaining 10% wondering why on earth after 28 years on this planet, I’m still not quite used to the three days a year when we have that awful muggy hot weather that leaves you dripping and stuck to every surface. Shit me, I’m so sorry for talking about the weather as if I’m on a boring first date or stuck in an conversation with people who’s social skills are more painful that having razor blades consistently attack your eyeballs.

Today my friends, we’re going to talk about Self catheterising, affectionately termed cath’ing by myself (and most probably anyone else that’s ever had to say the phrase more than once). At this point I’m genuinely unsure of whether it was the late night cheese and bacon burger that’s keeping me wide awake, the fact that it’s now been 9 months since my bladder turned into a little dickhead and decided to change my life forever, or because I’ve spent the day having a Urodynamics test (laymans terms, lots of tubes being poked and prodded in a tiny tiny hole near your vagina and your arse)… but I cannot, for the life of me, sleep. So, if you came across this post because you’ve searched self cathing, I’m so sorry for what you/someone you know is probably going through/about to go through. And if you’ve stumbled across this because you sort’ve vaguely don’t mind my fashion sense or travel musings, then I’m equally as sorry that you’re about to spend 3 minutes of your life getting more intimate than you ever wanted to with my bladder habits.

So, in case you wasn’t aware – which I’m guessing, as I’ve never properly shared this online, you probably won’t be – 9 months I woke up and completely lost all ability to use my bladder.

It literally just didn’t work. Completely out of the blue. I’d sit, I’d get the urge to piss, I’d metaphorically be getting the pom poms out ready to cheer for my useless little organ to actually do what it’s supposed to do…. but, nothing.

I’m not going to go into the ins and outs of what the next traumatic however many days/hours/weeks ensued but what I will say is, I never once, for a millisecond, thought that 9 months down the line I’d still have to cath. But more importantly – because lads, despite the morbid start, middle and probably almost end that this post will be, it’s actually meant to be relatively helpful and positive – never did I once think that I’d actually get used to having to cath. That my new normal would ever feel… normal. Normal-ish, anyway.

Just in case you have no idea what it is (because why actually would you, unless you have to do it yourself – and if you do, virtual fist pumps friend, you’re a legend!), Self catheterising involves inserting a small tube into your urethra (which is such a small hole, it genuinely took me 10+ attempts to find it when the doctors initially taught me how to do it) which allows you to manually drain your own bladder. It’s not cute, it’s not sexy, but it’s quite frankly life saving for people that need it.

So here’s the thing – when you tell people that you need to self cath sometimes, you are instantly met with adulation and lots of “you’re so inspiring, I could never do it” “I don’t know how you do it” etc. and I get it, what else are you actually meant to say? But for a very long time, cathing didn’t make me feel inspiring or super hero-esque, or any of the other words people use in a desperate attempt to make you feel better about the situation (which I’ve now coined a shit-uation). It made me feel… ugly.

Ugly, and abnormal, and hard done by. Embarrassingly, self-pityingly hard done by (which is an emotion I despise and have desperately tried to banish to the cupboard under the stairs for a long time). Physically I looked absolutely no different. Hair was still the same, makeup still attempting to be on fleek but probably achieving more bleak. I didn’t look any different on the outside and yet I always felt like the ugliest, least capable person in the room. I know that sounds narcissistic when I so clearly had so many more important things going on in life… but that’s the honest, brutal truth. I felt insecure and ugly and like I couldn’t compare to literally anybody.

Every time I’d cath, I’d cry. But not just a sad cry… like, I’m talking one of those breakdown crying sessions where you’re silent but the tears just STREAM with no end in sight. Like when you’ve drunk too much the night before and you wake up desperate to piss and it just never stops (providing you actually can piss lol*)

*painfully aware that joke isn’t amusing, funny, big or clever but what can I say, I’m a Chandler and humour makes me feel better.

For a long time, I felt like I was defined by looking for the disabled toilet wherever I went. By making sure I had a bag big enough to fit catheters and my cath mirror (a hilariously sassy little thing with a light that sits on the toilet and shows you your vag so you can find the right hole – harder than it sounds, ask the student nurse who accidentally whacked it into my actual vagina instead of my actual uretha. True story and one that I can only laugh at months on).

And then, more recently, once I’d started to accept that this was my life, I had a very brief stint of feeling empowered. I distinctly remember hovering over a dark and dingy portacabin at a glam event, in valentino heels and a bodycon dress, squatting over the toilet, desperately trying to find the right place after a disgusting amount of jager bombs. And, I did it. Quite frankly, with ease (my beer goggle eyes felt like I did it with ease but in reality I probably tried to shove it in my ear 5 times before reaching the right place). And I washed my hands, and I didn’t cry, I just went back to the event and smiled and acted like the pure sunshine that I used to be just over 9 months ago before this absolutely tore my life apart. I might possibly have had a little dance to Doja cat and a casual slut drop in there for good measure too. And I couldn’t help but think to myself, ‘you, Elle, are a fucking badass boss bitch. Not a single person in this room truly knows what you’re going through and you’ve smiled through it all.’

If you didn’t read my little third person monologue in a slurry south east london accent of someone whose one jager bomb away from Vom town, then please go back and do so. Many thanks.

The reality is, in my heart I know that Cathing doesn’t make me ugly. I also know that it doesn’t make me a big bad motherfuckin boss bitch. It makes me someone who was extremely, extremely unlucky but who’s learned to just get on with it. I’m not downplaying self cathing… whilst it is physically quite easy (once you’ve got the hang of it – top tip, I was told mid agonising, excruciating pain that if you cough, the urethra winks at you and quite honestly I’ve never been able to look at it the same again. But there you have it, cough for a better glimpse/to flirt with your urethra). Mentally, self cathing can really be pretty traumatic, and I know I’m not alone in this after diving head first into forums and talking to a lot of people on twitter about it.

But what I will say is… if you’re just at the beginning of this weird, terrifying self catheterisation journey, then I can promise you that it does get easier. I know it feels like it never will.. when you’re absolutely terrified that you’re gonna fuck it up and do more damage or give yourself a UTI from not draining properly. But it just does. You probably won’t feel normal because let’s be honest, it’s just not normal. But you won’t feel defined by it. You will get to a point where it’s not the first, last and everything in between thought of the day. And if you’re anything like me, you’ll feel a completely new sense of self worth because you are getting through this all by yourself. Because it really doesn’t matter how supportive people are around you, it’s you that has to live with this every day. It’s you that has to claw your way out of the bad days and it’s you that deserves to feel a sense of pride for smashing the living daylights out of the good days.

And if you literally have zero bladder/health problems but came here for a nosey anyway…. please, please wake up every day and feel grateful for your good health and the ability to be able to piss by yourself. Because you never know what’s around the corner.

Thank you for coming to my completely underwhelming Ted Talk.

xx