What not to say to people with IBS – a response – #supportallGUTfolks

2014 update

This post was written in 2012 and since this date the offending comment still exists in Health Magazine and unfortunately the comment facility has been closed. If you feel aggrieved at the comment I suggest you write to them – although both Nina’s comment (IBS Impact) and my requests have fallen on deaf ears, so how successful you would be is debatable.

I was reading an article for help for people diagnosed with inflammatory bowel disease (IBD,) in Health Magazine, really good useful tips actually, on how to be empathetic for those people with IBD. However I did start to see red when I read a comment of you should keep your symptoms of IBS to yourself, when empathizing with people who have IBD. Now, I do get angry really quickly when people make the suggestion that IBS is somewhat insignificant – is this because it is a ‘syndrome’ perhaps? I had a rant and a cup of tea (to gather my thoughts,) then I wrote a response to this article. Not an angry response – quite a nice balanced one, explaining that it is not helpful to people with irritable bowel syndrome (IBS) for the magazine to make this comment, with the reasons why. I also requested that they remove this particular comment from the site – to ensure that it was empathetic to all. My response was deleted from the site by the system administrators, this denies my freedom of speech as an advocate for the UK charity for IBS, and my professional ability to support all those people living with difficult GUT symptoms, despite the diagnosis. I was pleased that IBS Impact still have a well-balanced comment on the site, but they have not asked for it to be moderated – perhaps that was the difference. You can see the article here:-

http://www.health.com/health/gallery/0,,20533275,00.html

I am not in any way suggesting that crohns disease or ulcerative colitis, or any other GUT disorder is not significant, quite the contrary, but people should understand that for some people the symptoms of IBS can be very disabling. Neither am I using this article to promote IBS’s cause, I am just advocating promoting tolerance for all. So how do you empathise with someone with IBS? You can start by not saying the following:

IBS is all in your head.

This is not true, symptoms are very real. Is it the age-old view of society that IBS is ‘all in your head’ and therefore your symptoms cannot surely be real. Irritable bowel syndrome is a functional bowel condition, it is a condition where the digestive tract moves in a disordered way, producing symptoms, also the gut is hypersensitive to bloating causing pain. Yes, tests are negative, but most tests do not measure the speed the GUT moves. These symptoms are not a normal condition for the body, therefore it is difficult to understand how this disorder can be ‘imagined’. Now the gut does have a connection with the brain and the way someone is feeling can affect the way the digestive tract moves, but it certainly does not all start and end in their head. Read more about what Dr Bolen says about the brain GUT connection and five reasons why IBS is not all in someone’s head here:-

http://ibs.about.com/od/symptomsofib1/a/braingut.htm

http://ibs.about.com/od/symptomsofib1/a/notstress.htm

Oh – are you one of ‘those’ people that have a self diagnosed (thinking here – made up) food ‘intolerance’?

This is misguided, we are all aware of the popularity of alternative diets for celebrities, this does not help the cause of individuals who may have intolerance to certain foods. This can result in some level of disdain when a person with intolerances asks for a meal or product free from a certain ingredient. Please accept that not everyone has had access to professional help to identify what is causing symptoms and you should trust them, they know their bodies and what they can tolerate. You can ask them to help you to provide a meal or product that will not make them ill, most people respond very favourably to a request for help.

You are so fussy when it comes to food, you just need to get over it and eat your meal.

Comments like these are really suggesting there is nothing wrong with the person with IBS – therefore I don’t believe food affects you at all – so pull yourself together. Do you really want to tell your friend or family member that you don’t believe what real symptoms they have? This statement reinforces negative feelings and can result in mealtime arguments, really unhelpful for all involved, this will not help anyone’s digestion. Feelings do need to be discussed in a useful way, but choose a suitable time to do so and make it a positive experience by listening to each other to start.

You told me you couldn’t eat what? Oh sorry I forgot, I’ve made a vindaloo, its wheat free, will that do? You can have a large glass of milk to help reduce the heat, if you want.

The best way around this is to understand what your friend or relative is sensitive too and then perhaps you can hold some store cupboard items, that can be relied upon in an emergency. It is better to plan so that everyone can eat the same meal, but perhaps you can have an alternative in case of unannounced visits, or if you forget. Basic examples would be eggs (omelettes, poached) plain chicken or fish, boiled rice, fresh boiled warm potato, frozen carrots, salad leaves and you could also put a loaf of sliced wheat free bread in the freezer.

What do you mean you can’t come out?

Some people with IBS do not want to travel without preplanned toilet facilities and they may not wish to discuss their personal symptoms with you. Please try not to be offended. What is useful to say is that you are sorry that the person cannot come on the trip, and if you are a real friend you can offer help, if it is wanted – no questions asked, please! Wait for the person to discuss their symptoms, they will, if they feel happy and comfortable to do so. If they ask for help then the IBS Network makes a can’t wait card for trips out, it can be used in shops and stores. You could plan the trip together or wait to go till the persons symptoms are a little better controlled before you go. Arranging to visit the person in their own home is always an option, to make them feel less excluded, if the trip cannot be cancelled.

HA,HA,HA, lol,  those are Dave’s symptoms????? Really?? OMG! Just wait till I tell……..

If this person you are talking about is a friend or work colleague or even an acquaintance, then imagine how you would feel if someone were to say those things about you. Your ‘friend’ does not deserve this sort of treatment, behaviour like this causes stress and could be viewed as very hurtful – please think before you speak. Les Floyd who writes a cool blog wrote a blog about Socrates and the triple filter test, ask yourself these questions before you speak – 1. Have you made sure what you are going to tell is true? 2. Is what you are going to tell something good? 3. Is what you are going to tell something useful? If what you are going to say does not fulfil the truth, goodness or usefulness filter then simply don’t open your mouth – end of. The blog, which is really worth reading can be found here

http://lesism.blogspot.co.uk/2012_05_01_archive.html

We don’t have a special fussy eaters menu.

Remember the fact that the customer is king, the best retort you can give is to say that you may not have a good understanding of the persons requirements BUT YOU ARE WILLING TO LEARN (this is the most important part.) “What can we get for you to eat?” Then listen carefully and try to avoid contamination of their food – prepare it separately. This will make the person comfortable in what you are going to provide, it will also keep you a customer – and never forget, people with food intolerances always eat with others. If the person has had a good visit they are more likely to return and spread the good word with friends and family. Web sites that can help are

http://www.coeliac.org.uk/food-industry/caterers-and-restaurateurs

http://allergytraining.food.gov.uk/

(for ‘allergy’ also read intolerance, plenty of information about how to cater for food intolerances on the site.)

Everybody gets tired.

Tiredness is a symptom of IBS, it is not known what the cause is, but it is a symptom. Yes everyone does get tired at times but some people with IBS can have the added complication of tiredness to cope with as well as the hustle and bustle of life. The person with IBS will have some idea of how much they can cope with, please be empathetic and listen.

Some of the comments or questions discussed here are a little bit exaggerated, but I am sure that everyone has had similar comments made to them at some point. I was also a little disappointed with some of the comments on the Health Magazine site – but each to their own I suppose, all I ask is please be sensitive when speaking to someone with IBS. You know what, though? Some of the answers will also help others with GUT symptoms to eat well, so people with GUT conditions really do have very similar experiences and should be able to support each other.