25 THINGS NOT TO SAY TO AN IBS SUFFERER!
Before you try and help or encourage read this!
1: You’ve been in the bathroom a long time!
A: Yes, that’s because it is one of the few places I feel safe. You do know I’m not resting in there don’t you. It isn’t a spa room! I’m often in pain, suffering urgency and sometimes I just don’t dare to get off the loo!
2: What are you getting so stressed / anxious about its only xyz
A: XYZ can be anything for an IBS sufferer. Going for a meal, visiting, having visitors, eating out etc. etc. Please understand that IBS is not only about physical symptoms, it has emotional consequences too. People rarely even recognise them, unless you have IBS! IBS drains emotional energy and internal resources, many IBS sufferers have multiple ‘what if’ scenarios going on inside their heads, thoughts that are being worked on lots of the time, just in case. And that takes lots of energy that is why I so often feel tired and drained!
3: Why have you brought your own food?
A: Because I can’t trust that I won’t have some sort of reaction or flare when I eat food I haven’t prepared. It gives me peace of mind, and reduces the risks for me.
4: Just get on with it!
A: (Just stand back as you are now in dangerous territory) I am getting on with it, that is why I am drained, that is why I feel agitated and on edge, because people say some of the most offensive things to me, without even thinking anything about it. IBS could easily rule my life, but I am not going to let it, so yes I am just getting on with it. Because I have no choice!
5: Is it really that bad?
A: Please take a moment to think about what you have just asked me. If you know me, then you know I would be well pleased to get rid of IBS. You also know I don’t tend to exaggerate things, so when you see me in pain, or dashing for the bathroom, or saying no I cannot go out, or I’m stopped from doing many of the things I really want to do, then yes trust me it is that bad. If you don’t know me, please also take a moment to think what you have asked, and then consider how you would feel if I said to you I think you’re a pathetic dumbo who should know better. Now you feel how I do by your question!
6: We are not stopping once we set off!
A: Oh yes, and that really helps!! Whether you are aware of it or not, you have just attempted to dis-empower me. So know this: I really don’t care what or why you say that, if we have to stop we will, because I’m sure you really don’t want the consequences of your statement happening in your car! Also expect: If we are going in my car = my rules! I’m glad that’s clear!
7: I thought your stomach was bad, why are you eating / drinking / ordering that!
A: Because I am doing what I think is right for me. Things are so variable, trigger foods and drinks change, I can eat the same thing from day to day, then one time get a trigger! For no obvious reason!
This trigger is then added to the already existing library of fears and caution I use every day at meal times and other times of the day. There is no way you will ever understand. However there is nothing to suggest you will not be an IBS sufferer one day yourself, it seems to be the luck of the draw. Then you might understand.
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8: You should eat better / try this or that diet!
A: Please do not tell me what to eat. Diets, don’t you think I have tried? They are not always the answer, there is no one magic bullet or panacea. I have spent XX years trying to resolve this so have the medical profession and the researchers. It is trial and error.
9: How long is this going to go on for?
A: Much longer than this conversation I expect. The doctor doesn’t know, the consultant doesn’t know, how am I to know? There is no sell by label on it, it is an unknown, and you know what, that adds to the stress and anxiety and the draining of energy I feel every day. If I had a date that it would all be over, it would still be difficult, but I would cope. But as yet it’s open ended. How do you think that would make you feel?
10: Go and see a doctor
A: Done it, again and again and again. They are limited in knowledge, and medications and suggestions. And please don’t say get a second opinion, done that to, and another and another.
11: Haven’t you sorted it out yet!
A: See above. But to answer your question, no not yet, but if I find something that will sort it for me, I will shout it from the roof tops. Please only ask me that again when you see me on the roof!
12: Why are you getting agitated?
A: Let me think?
Please have a re-read of all the above, and all the following, and then ask me that again. In short you have no idea what this condition is like, and I hope you never do. I am pleased your universe seems to operate differently from everyone else’s, but please be aware, when you enter my universe and my sphere of influence, I am, to repeat a previous answer getting on with it, and constant ignorant questions and unrealistic expectations, and a plain inability to filter thoughts and questions before they are spoken does, for some reason get me agitated. I could use stronger words but least said soonest mended!
13: Why are you shouting?
A: See 12!
14: You should stop smoking
A: Thank you, yes I am aware of that, but that would also mean taking away a support system that, although is harmful, does help me to relax. Though I know too it is simply satisfying a craving for nicotine which makes me feel better. So your suggesting I open up another battle front which will take energy I don’t have, add withdrawal symptoms to everything else I’m coping with! Is unlikely to be considered more than it took to answer this question.
15: Is it really that painful?
A: Oh FFS! How can I describe this? At best, it is like a nagging toothache in my stomach, normally, it feels like I have been punched in the stomach no matter if I stand, sit or slouch, and at its worst I would imagine the kick from a very irritable donkey to be a fair comparison. Also the pain is not only in my stomach, it’s elsewhere too, but to save complicating matters, I won’t go into it, just believe me!
16: Do you have to leave already?
Well this is an easy one. YES! It’s because I have to, I feel unwell, I feel drained, and tired, and nauseous, I’m in pain, and just need a hot water bottle and peace and quiet. Though the reality may be different!
17: Do you think this is all in your head?
If you mean is it psychosomatic, the answer is no. If you are asking do I think about it all my waking moments, planning, hoping, wondering why, searching for solutions, trying to deal with my familiar companions of dread, fear, stress and anxiety and what ifs, then yes, it is in my head. But I also have all the everyday pressures and challenges life brings too. See 12 above for additional thoughts!
18: What is IBS anyway?
A: Unless you have lots of time to listen to an explanation, time I certainly don’t have at the moment, I suggest a quick search of the web, which will be your gateway of beginning to understand the scourge of 1 in 5 of the population. IBS is the thief of time and happiness. The destroyer of friendships, relationships, careers and professions. The deliverer of embarrassment and sometimes disgust to! At times I want to hide away, but I can’t. Sometimes I feel a fraud, I spend lots of time hiding IBS symptoms, I find it difficult to trust people I can open up to, but you might not find those elements mentioned, but they exist.
Sometimes I wish it was something else, something more socially acceptable, but then I feel guilty for thinking that way.
I hope you take time to read sufficiently to understand this condition, that way you can be more understanding and supportive.
19: What is a syndrome?
A: See the first two and a half lines of 18 above. And then think about what it really means. Like there is no one set of symptoms. Everyone is different. Bodies and minds react differently. Are you starting to see the depth of the problem?
20: Eating xyz will help you, it helped the woman down the road.
A: See 19 above. I’m please for her! I’ve already tried it and I am not so lucky!
21: At least it gets you noticed!
A: It is suggested if you are that insensitive to say this, then it might be best if you said it over the phone. To be saying this in close proximity of an IBS sufferer is seriously unwise! You have been warned!
22: You have my sympathy!
A: Thank you, but I don’t want it. I would much prefer empathy (I’ll save you the trouble of looking it up = understanding). There is nothing you can do to help the condition, but you can help me if you try and understand what my life is like with this condition. Life is difficult enough without it, but with IBS things are so much more difficult. So please, please try and understand.
23: You must be able to feel it coming on?
A: Well yes of course I can. But that feeling might be 3-5 days coming or less than 2 minutes. And when it comes it needs to be listened to, and I need to act.. Sometimes, it is quicker than me, and that complicates and brings floods of emotions and more besides. Imagine! In addition restrooms are often locked, or unclean, most days I plan my outings like military maneuvers, just to try and have some peace of mind.
24: You’ve not been for how long, that’s not good for you!
A: You are right, it isn’t good for me. But I’ve not yet learned how to train my gut to become more regular. It can be very serious, especially if faecal impaction occurs! Something else you might want to do a search on.
25: Wish you could be that fast when I want you to be!
A: If this is an attempt at humour, be aware it won’t be seen as such. If you have read all the above you will have an understanding why!
My name is Michael Mahoney
I do not have IBS, but I have lived with it since 1992 helping referred patients, and clients personally in my hypnotherapy practice, and since 1998 through my highly acclaimed IBS Audio Program 100 which has users in 45 countries.
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The above examples are some of the many reported back to me by my patients over the years. The answers are from my recollections of patients reported responses and my own thoughts mixed in.
Truly I hope the above goes some way to helping you understand IBS and the impact it has on the life of the sufferer. Though as mentioned there is no hard and fast rules, symptoms are as wide and diverse as we are individual. Medically the causes are poorly understood, the treatment options are limited. There is still a long way to go.
There is hope!
While you are reading this article, please take time to look at the IBS Audio Program 100, read how it was developed over 8 years, specifically for the IBS condition and its physical and emotional symptoms.
See how it has helped many users, and has stood the test of time.
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