I know I shouldn't let the comments of ignorant friends get to me, but they do. Big time! I wonder how other people deal with this. "You're much better now" just because I'm trying to be less of a hermit by going out more. What qualifies them to tell me I'm better?! And the old favourite "well you've had all the tests and they've found nothing wrong, so you probably should accept it's psychological". Not only is this a very difficult condition to live with, but the behaviours/comments of others are quite difficult too. Is it because people have no idea what to say to someone with a chronic health condition? I've come very close to blasting off at one friend, who I find particularly patronising, but I know it will just upset me if I do, so have managed to control myself so far! Why can't people be a bit more 'intelligent' and either try to understand or read up so they don't keep making these patronising remarks. As if I would make such a condition up and purposely restrict my life!! Yes, I am trying to get out more and yes I did manage to get away for a bit of a holiday recently. But it's because I'm learning to live with, and manage, my symptoms, not because they've gone away!
When I meet new people now, I don't mention anything about my IBS as them not knowing will prevent any discussion about it and therefore more annoying comments.
Rant over. Any suggestions? Or do I just need to grow up and deal with it?
Grrrrr!
Written by
Maz1962
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I have a lot of conditions and learnt over decades that there is nobody more patient than people with chronic conditions.You have to learn to be . Stop , breath and count to ten , then if you still want to explode count again. As I hear that murder is wrong and hitting your friends and family with a mallet is frowned upon in good society!😆😆😆
If someone says " you must be better now because...."
I brightly say " No , not better, but feeling proud of myself for doing what I can ."
If someone uses the " just" comments like , " you should just eat more quinoa " , " you should just do yoga" or " you should do what that celeb does and stand on your head in an anti-gravity box " .
In my head I say to myself , " and you should just be quiet before I poke you with a fork " , but smile and say out loud , " oh , yes I'll think about that but the last time I tried something like it I was on the loo for a week!"
It's not a coincidence that myself and my daughter's all have craft bags that say , " I crochet because murder is wrong " . Up to now that wool and hook is the only thing that has stopped us , but there have been occasions that the odd over opinionated, sarcastic person just missed them being used to fashion a colourful garrote!!😆😆😆
Feel sorry for your friends , ignorance and cruelty are two other conditions that seem to have no cure , as well !
Show them a photo of what can happen. An acropolyptic bathroom photo soon shuts em up. Then educate them in the fact you may look well on the outside, but you're determined not to let your problem define who you are.
Oh I love the" crochet saying" that's made my day and will keep that in my mind next time some idiot decides to make a patronising comment Thank you 😂xx
You can also get tote bags and notebooks with it on for other crafts too like art , knitting etc. It always makes people laugh when they read it and we all smile because they don't realise just how seriously they should take it!😆😆😆
Well my feeling is it certainly isn't your fault! Friends can be a bit hard to deal with sometimes. I have friends who have their own health problems and seem to UNDERSTAND IBS! Yet even they, bless their souls, sometimes comment that "I should be getting better by now"....or "have I tried *this that or the other) supplement?".....or "you still can't eat onions??"....."you may have malnutrition...take this/that/ or the other"
(I don't apparently have malnutrition, and fairly fit and well apart from a temperamental gut sometimes. I have worked out the foods that suit me, and try to expand on them when I can, I can still walk 10 miles if I have to, without too much payback (they can't!)
I am nearly 70 and usually put a day's work in on my land/home etc, plus two walks.
They are trying to be helpful. I know that. I don't take it too badly but it seems they think I don't know what I'm doing, and need their help and push to get me to take umpteen supplements (which I already know aren't for me. I tried most of them,)
We can't account for the mind set of other people. That is their issue.
It has to be a question of "do I really need these people. Do I basically like them? Are they friends or not? Friends don't always see eye to eye, but we often take the rough with the smooth....."
Or ..."Do I really need this hassle and am much happier without them?" Horrible thought, but one to take a look at. How much do you differ and are they just "sometime friends" or real pals? If it's just sometime-friends, let it be and try not to let them bother you. If it's real pals, maybe find a way of chatting to them about what you're going through. They can't know if they're not told.
No you don't have to grow up and deal with it I get so fed up by the insensitive things people say but it's because they don't know what to say They think they are helping
I went to yoga for years and our teacher always used to say "Before you say anything stop and think is it kind and is it necessary "
I know how hard it is one of my new years resolutions was to stop letting peoples comments upset me
It's ignorance and that they haven't experienced it themselves
I think one of the worst things too is when you confide in someone else about the comments and they say Oh don't take any notice or ignore them If only it was that easy
I now keep a diary and write down the remark and exactly how it upsets me and I see that yes it's raw at first but after a few days it gets better and I stop feeling patronised and upset
I'm sorry I haven't really got any suggestions but I hope it's helped a little that I know exactly how you feel and understand
hi I know exactly what you mean I think people just don’t understand if they have never had any problems to do with their tummy’s when I say I can’t eat something they say “oh a little bit won’t hurt you” I just say oh yes it will!!
One thing I've learned is that it is important for others to know that:
"IBS is a life long condition for which there is currently no cure. Like other chronic conditions you may have good days, you may have bad days, you may be 'in remission' for a little while or you might be managing it well, but it has the possibility of rearing its ugly head".
SO, there is no 'getting better now', when it is something that you don't just recover from and it requires daily management.
It is really important for people to know this, so they can stop making stupid comments.
Often what people say, says more about them than about you. For instance, I know a lot of people love eating out because they can't be bothered to cook or eating out is considered an 'event'. Many people with IBS can't remember the last time they were able to eat out. Sometimes their comments come from a place of "I need someone to eat out with, so you are no use to me when I want to eat out". Your IBS is inconvenient for them, which is why they keep making comments about you getting better, in the hope that you are going to start eating out with them again. It is all about them and it comes from a very selfish place.
I have just moved to a new area and my strategy is to join groups where people might be more 'sensitive', such as mindfulness, meditation or philosophy. Where I lived before I belonged to a mindful walking group. The people were so kind and really sensitive to other people's needs. With people you already know, its a case of educating them as described above. If people constantly make you feel bad about your condition (even after them being educated), maybe its best for a re-think.
On a wider note, it doesn't help that IBS is still not discussed enough in the media, like mental health issues are now. It is still regarded as an embarrassing subject that no one wants to talk about. I am still perturbed by the label it has been given 'Irritable Bowel Syndrome'. You might as well call it 'Irritable Poo Syndrome' for having to use the word 'Bowel' in public! Or in fact the word 'Irritable' which makes you sound like a recalcitrant child. Chrohns and Colitis can have related symptoms but it has a medical terminology. It needs a rename. I think we discussed this before on Healthunlocked some time ago, but it didn't seem to go anywhere.
Yeah, we did discuss renaming it, I remember that, some good suggestions as I recall and you are right nothing seems to be a no-no for discussion these days except IBS!
Thanks for your thoughts, which are very helpful and useful. I totally agree about the label of 'IBS'. A 'syndrome' makes it sound almost like it might not be something real! And the 'irritable', yes, that too. I wonder what clever person started this label for this condition. I bet they don't suffer with it! Something like a Dysfunctional Gut might be better (though also sounds a bit 'vague' using the word 'dysfunctional'). Or maybe it needs a totally new label. A completely new word for it. It's a shame we have to suffer issues around the labelling, as well as the condition itself. I wonder if I started calling it something else whether people would react differently?
Yes. Maybe make up something that sounds more 'serious' (even though in reality it is serious, since it is so life limiting). People might then look concerned and nod sympathetically :-).
What I forgot to mention is another aspect that people need to be aware of, particularly when they says things like 'you've passed all the tests, so it must be all in your head'; they need to know that IBS is a medical condition for which the distinct set of causes have not yet been found by scientists. The tests that are conducted for IBS are for those illnesses where tests and treatments are available, in order to rule them out. There are no mainstream available tests for IBS or any official treatments. This is because science has not yet found the cause or the cure. SO IBS is a chronic illness in its own right, which eventually will have its own set of tests and treatments but the science is not there yet.
I know it's hard but in order to not upset yourself try to rise above it. I have had IBS now for nearly 40 years and have lost most of my friends along the way but, fortunately, I have a wonderful husband and an understanding son. Plus all this lot on here! They are a great bunch. That's all I need.
It's certainly one way of working out who your true friends are, because they won't judge you. Not much you can do about family, but I have finally got my wife to accept that I might not be able to travel at short notice, what with 3 lung conditions, IBS, chronic prostatitis and anxiety (unsurprisingly!). The children are more of a problem (even in their 30s!), but are coming round gradually. It doesn't stop the embarrassment and it is very frustrating (particularly for someone like me who took pride in being reliable), but I'm gradually feeling less bad about it and that reduces the stress which otherwise tends to exacerbate the problems.
I agree with you, people are ignorant, it's a very painful syndrome, least you managed to get out, could I be nosey and ask what medication you are on?
I don't take anything on a regular basis, but use Immodium as a way to stop any symptoms if I need to go out and feel 'safe'. I suffer with regularly alternating constipation and diarrhoea, which is quite difficult to manage. I haven't yet managed to block myself up with the Immodium but I do worry about doing so. I only take it when going out.
it’s a helluva battle, and I sympathise. I don’t talk much to people about my personal gut journey so I don’t get too much of this annoying feedback that you describe but then that also means I don’t get much support either.
After years of trying everything I’ve decided my issues are multifaceted but I’ve come to the conclusion that the psychological is a big factor for me. Not that I’m ‘wishing this on myself’ or ‘making this happen’ but I’ve had years of stress (work stress and two partners with cancer among other things) and I have really come to believe in the two way mind gut connection. My gut is now on a hair trigger and emotional upset is quickly reflected in what happens in my gut.
Right now I’m trying the Nerva app - it’s a research based self hypnosis and educative app put out by Monash Health. It seems to be helping a little and is definitely helping my mental health. I’m just posting it here because I thought if there is a psychological (ie emotional) element to your issues it might help you too. I feel for all of us who deal with ibs.
I have had IBS since about 2012 starting with painful bloating and a change in bowel movement, had all the elimination tests and a colonoscopy and eventually told I had a bit of irritable bowel syndrome and some diverticular disease which is more common as you get older. I was then 59 now approaching my 70th birthday. I have had CBT and nutritional advice as well as medications in the form of Amitriptyline (most helpful) mebeverene /colofac etc. Currently I am just taking probiotics "Alflorex" and have some low fodmap meals in the freezer from "Field Doctor" an on line company producing made to order meals for people with special dietary needs. I have had many changes with this disease, syndrome ,illness or whatever it gets called. Apart from Yoga, meditation and exercise(even just walking helps) I have found what you are saying about attitudes to it from people who don't suffer this "thing" called IBS is echoed in the latest book I am reading which you may find helpful called "Irritable Bowel Syndrome " Navigating Your Way to Recovery" by Dr Megan Arroll and Professor Christine Dancey, which I got at my local library. Some GPs have been helpful but gastroenterologists and people who suffer from illnesses you can't see are the most helpful and illuminating and echo the issues that you talk about and many others on this thread. There is more research in progress for this condition and more help out there and I find people in my yoga group and my Transcendental meditation groups are supportive because many of them have had all sorts of issues that have brought them to these more holistic practices. There have also been some excellent programmes on TV about your gut, and all digestive problems of which IBS is about the most common.
I know how it feels. I had oesophageal cancer 5 years ago. I was cancer free after major major surgery plus chemoradiotherapy then 15months on had a massive life threatening hernia when my guts all got into my chest. I have had ibs since before all that but it changed after surgery from c to d.. much more difficult to cope with. Any way, what struck a cord so to speak is people who tell you how well / so much better etc you look. I fear I may crack at this one day when I have fought mentally and physically to get somewhere, not to speak of the imodiom needed etc. There, my rant over thank goodness for this site.
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