It’s IBS Awareness Month 2018 throughout April, so I thought I’d chat through the 10 reasons why I never tell people that I have IBS.
Of course, these days I very openly blog about having IBS, but some or all of these reasons were valid or are still true for me today. Sometimes, I just struggle to overcome the embarrassment attached to those dreaded three letters: IBS.
But I hope that by blogging about IBS, I can help to raise awareness about the condition so that those newly diagnosed don’t have to deal with the same stigma I’ve experienced in the last 8 years.
Here’s 10 reasons that hit home hard for me and touch on that stigma in many different ways…
1. Nobody likes hearing the word ‘bowel’.
Direct quote from my Mum here: “it’s not lady-like to talk about your bowels”. That was in response to some of my first YouTube videos on IBS several years ago.
I’m not even saying I disagree with her here, but that’s where we’re at with the word ‘bowel’ as a society. And it’s literally 33.33% of the term IBS.
2. People make assumptions.
Ok, ‘irritable bowel’ does make it sound like I might spontaneously run to the toilet at any moment. And that’s what everyone usually assumes.
But actually, it’s the total opposite for me – I have IBS-C.
I live with a constant feeling of fullness, like I’m carrying around several roast dinners in my body at once (probably not entirely inaccurate). The pain of never going to the loo often enough gives me shooting pains and trapped gas.
IBS isn’t one-size-fits-all.
3. People say stupid things like ‘it’s all in your head’.
Is it a set rule that anyone who has an incurable condition with no known medical cause must be making it up?
My symptoms are proof enough that it’s not ‘all in my head’, thank you very much.
This might sound crude, but spend 24 hours with me after I’ve eaten an onion and see whether or not you think it’s all in my head.
Spoiler alert: it wouldn’t be pleasant.
4. People ask questions.
I mean, it’s nice that people show an interest right? They may even care about you, which is really genuinely appreciated and unexpected.
But it’d be a greater world if everyone appreciated that I may not wish to talk about my medical problems with just anybody.
“So… what would happen if you did eat gluten?”
Trust me, you don’t want to know. Let’s be honest, if I really went into detail, you’d probably throw up in your mouth a little at the very least.
5. People don’t get it.
It’s an incurable condition and I have to change my entire life around IBS – what I eat, where I go, what I do and don’t do. IBS forces you to put it first and unless you want a crippling stomach ache your whole life, you don’t have much of a choice.
In my experience, it’s only some close friends and family who get that you have to put your own health before them and their plans. Perhaps you go out to eat less, you don’t go out drinking anymore or you feel bad 90% of the time and just want to stay at home.
Prepare to be labelled as anti-social with IBS as your ‘excuse’.
But I’m not anti-social. I just don’t have a choice. I go out when IBS lets me go out.
6. IBS is portrayed as a joke.
Like I said about the use of the word ‘bowel’ earlier, TV shows often use the term IBS for comic relief. Take this scene from The Inbetweeners movie for example.
Neil uncontrollably lets out a massive sh*t and blames his ‘irritating bowl’ with multiple fart sound effects. Now I’m not being a party pooper (ha) because I’m sure I laughed hysterically at this first time round.
But simultaneously, it’s just another example that reinforces IBS as a source of comedy and a condition which makes you sh*t yourself.
7. I didn’t want all of the above to affect my job.
If you have an understanding boss who doesn’t immediately think you’re skiving when your IBS flares up, then don’t ever quit that job.
I’ve had professional jobs in highly competitive and pressured environments and honestly – there’s no room for lacklustre attendance or performance, whatever the reason.
I felt I couldn’t tell my employer I had IBS, because rightly or wrongly, they seemed to have little interest in my personal health beyond minimising the days I had as sick leave. I get it, it’s fair enough. So I decided not to tell them I had a lifelong medical condition.
But the flipside is that by not telling my employer I had IBS, I spent a lot of my working life hunched over at a desk trying to hide the discomfort. It meant that I always turned up but my work suffered anyway and I never seemed very sociable.
I eventually had to concede and leave that great job, accepting that yet again, IBS had won.
8. It immediately makes things ‘medical’.
This might just be me, but when everyone is chilled, relaxing and having fun, nothing sinks that ship faster than making things ‘medical’.
As I mentioned earlier, people always ask questions when I say my IBS is the reason I’m not drinking, I don’t eat this or that or I’m not coming out to eat etc.
These days, I’d just tell them something vague like “you don’t want to know” when quizzed about IBS. But in the past, I’d just hit them with the whole encyclopaedia on IBS. I’d start telling them what each letter of FODMAP stands for and how fermentable sugars give me intense bloating and the worst smelling gas.
Needless to say, they did stop asking questions quite quickly.
9. It’s embarrassing.
Look, I’ve blogged about IBS waaaaay too openly for years and I’m still embarrassed to tell people about IBS. Mainly for all of the above reasons. But why are we all so embarrassed when it comes to bowels?
I believe it’s called the ‘poo taboo’, right? Any mention of anything to do with our bowels immediately makes people mentally (sometimes physically I guess) vomit. But I have no idea why – why are we like that as a society?
Granted, with those closest to me, I can go into way too much detail about my IBS and not even care. But with new people, though I’m clearly quite comfortable talking about it, they’re definitely not.
10. I don’t want to be judged by a medical condition.
“Oh you know, she’s the one with IBS.”
“She’s probably off sick with her IBS again. It’s such an easy excuse.”
“She can’t eat such weird things and she always blames it on her IBS. She’s just fussy.”
Clearly everyone has a skewed or misinformed perception of IBS even in 2018, so why would I want to be judged by a medical condition?
It’s part of the reason I don’t want to tell anybody that I have IBS unless forced to. I’m just me, I’m a living person with a personality, not a walking medical condition.
This IBS Awareness Month, be brave and don’t be afraid to be open and honest when talking about IBS. I know it’s tough for all the reasons mentioned above, but it’s the only way we’ll combat the stigma attached to IBS.
If you’re struggling with IBS and need support, check out the IBS Network. If you just want to chat or ask me about my IBS (no I’m not too embarrassed to talk to my fellow IBS sufferers!) then hit me up on Facebook, Twitter or Instagram.
Stay strong and look after yourself.
Thanks for reading,