Do you recognize any of these comments? If you’ve ever dared tell someone that you have Irritable Bowel Syndrome (IBS), then you’ve probably heard at least one of these ridiculous responses, and maybe you’ve heard some others too—IBS is “just a women’s problem,” it’s easily controlled by cutting out wheat/dairy/alcohol/peanuts/food, it’s mind over matter, it’s not even a real disorder, it’s all your fault, and the fact that you have a condition with the word “bowel” in the title is the funniest thing in the history of the world.

 

I’ve had IBS for almost twenty years, and sometimes I still sit open-mouthed in shock at the things non-sufferers say. What shocks me even more is that such comments often come from the people who are supposed to care about us the most—husbands, wives, parents, close friends, and family. Why do otherwise genuine, loving people suddenly turn into insensitive oafs when it comes to IBS?

 

Well, I think that there are a number of different reasons why people can be so incredibly unfeeling, and I think it’s worth trying to understand these reasons. Perhaps then we can learn the best way to deal with hurtful comments without letting them add to our pain.

 

So here are my top five reasons why people are so insensitive when it comes to IBS:

 

1)      IBS myths and legends. IBS has been misunderstood, underrated, or just plain ignored for many, many years. Twenty or thirty years ago IBS, or “spastic colon,” was considered to be a psychological disorder by pretty much everyone, and that’s one of the reasons why the “all in your head” nonsense persists today. Some doctors still believe this theory, because that’s what they were taught when they were trained, just as they were taught that heart attacks were linked to Type A personalities and ulcers were caused by stress. IBS was also considered to be a harmless inconvenience because it didn’t kill anyone, it never showed up on any medical tests, and it mostly affected women, who, as you know, are hysterical most of the time anyway. It takes a long time for this kind of ignorance to die. When people decide that you are exaggerating your pain or say that you should just relax and all your problems will be solved, they’re often simply repeating the views of old doctors who had yet to properly study IBS.

 

2)       Assumptions make an ass… Most people have heard of IBS, and most people now know a little bit about it. Unfortunately, they often assume that what they know about IBS applies to all IBS sufferers—especially if they know one or two people who actually suffer from IBS.Great Aunt Maud’s IBS experience suddenly becomes the blueprint for the entire population of IBS sufferers—she had terrible diarrhea and solved it by taking peppermint, and that’s what you should do too. Never mind the fact that you’ve never had diarrhea in your life and you’re allergic to peppermint.

Assumptions and IBS don’t mix. There are different degrees of IBS, from mild to very severe, and many different symptoms. Some medical conditions are pretty universal, with universal symptoms, but your experience of IBS could well be light years away from mine.

Sometimes I catch fellow sufferers making these kinds of assumptions, blithely claiming that because they have managed to keep a job or go on vacation all other sufferers should be able to do the same. IBS is far more complex than that.

 

3)       Embarrassing bowels. We are taught from a very young age that it is impolite to talk about poop. We mustn’t tell anyone when we need to have a bowel movement, and we mustn’t discuss bowel movements, gas, or diarrhea. In fact, we are pretty much taught that we should act like we never have a bowel movement—after all, it’s dirty, disgusting, and humiliating to even think about.

The taboo that we put on bowel functions means that as adults we are mortified if we need to discuss our intestines. People often suffer from IBS in silence for years because they are too embarrassed to go the doctor and say that their pooping habits have gone awry, when they would be perfectly comfortable talking about all kinds of other complaints.

Therefore, non-sufferers usually don’t want to hear about your bowel issues—they can cope with general terms and euphemisms, but they get squeamish if you go into detail. Now, if I’m honest I don’t really want to know what your last poop looked like, but if we are told to hush up about every aspect of a disorder that is ruining our lives, it will only make us feel worse.

 

4)       People have stupid ideas about everything; we just don’t care most of the time. We like to think that we’re experts on all kinds of subjects, when in reality it’s the exact opposite. The guy who’s confidently informing you that IBS is an inflammatory bowel disorder probably has all kinds of ludicrous “knowledge” hidden away to take out at appropriate moments. This knowledge usually amounts to Stuff He Overheard at the Hairdresser.

Now, most of us won’t remotely care if this guy decides to teach us that there are hippos living wild and free in Arkansas, because hippos have no effect on our lives. IBS has a massive effect on our lives, and we often feel miserable or angry or hopeless about it. When someone claims to be an expert on our condition but has no expertise whatsoever, they tap straight into this wellspring of emotion.

People like to imply that IBS is easy to live with, or that we’re exaggerating the effects of this innocuous little disorder. That’s not just passing on a piece of fact-free knowledge; that’s telling us in no uncertain terms that we’re weak and pathetic and that if they had IBS they wouldn’t let it bother them—they’d just wince slightly through a five-hour diarrhea attack and then make sure they took their peppermint to get cured. It’s a wonder we don’t punch them on the nose.

 

5)       Watching a loved one suffer is not easy. Coping with IBS is very difficult, but it’s also difficult to watch someone you love cope with IBS. Imagine watching the person you love most in the world crying in pain day after day, then imagine feeling like there is nothing you can do to help. Perhaps you have even been told by doctors that there is no treatment available and that your loved one will suffer forever.

That can’t be easy. All kinds of emotions can come into play—fear, anger, helplessness, hopelessness. Almost unconsciously your loved one might decide that the only way out for both of you is to fight the illness, that if only the IBS sufferer would try harder, or stop being so anxious, it would lead to healing.

This can result in a “just stop worrying so much and it will get better” type of reaction. It may well be that you are not actually being told that you should magically, somehow, cure your own illness, but that someone who loves you is desperate to see you well and has absolutely no idea how to help.

 

These are just some of the reasons why people come out with such tripe when they talk us IBS folk, and no doubt there are other reasons too. But what do you do if you’re the poor IBS sufferer who has to listen to this stuff?

 

Well, I think that that depends on how much you care about the person speaking to you. If a guy you vaguely know at work tells you that in his considered opinion IBS doesn’t exist, then I would smile politely and ignore him completely, secure in the knowledge that his considered opinion also extends to the Mississippi river and swimming hippos. On the other hand, if your husband or wife insists on informing you that IBS is a minor problem, or something that you should cure yourself of through deep breathing and a positive attitude, that’s obviously not something that you want to live with. Anyone who is suffering from IBS deserves support and understanding, and if you’re not getting it from those you are closest to, then something seriously needs to change.

 

So, what’s the solution? Education and communication: Education so that the people around you know that IBS is not psychological, not caused by stress, not easily cured, and not easy to live with; communication so that people understand how much they hurt you when they make these comments.

 

There are a number of ways to educate your loved ones about IBS. You could ask them to read a whole book about IBS. You could show them a website about IBS. You could print some info from this website and leave it lying around. It will depend on how willing they are to learn, and how stuck they are in their own beliefs.

 

It will also depend on what you think will influence them the most. If they are the scientific type, show them all the papers on www.pubmed.com; if they are a people person, show them the personal stories on www.ibsgroup.org or www.ibstales.com; if they are into celebrities, tell them that Cybill Shepherd has IBS, or that John F. Kennedy might have had IBS—he certainly had persistent problems with his bowels that could have been IBS.

 

Educating yourself on all aspects of IBS is also valuable, because that way you will be able to identify the people who don’t know what they’re talking about—you can then choose to either ignore or challenge them. An in-depth knowledge of current IBS research, for example, can be a wonderful shield against anyone who thinks that IBS is a simple problem with a simple solution.

 

Perhaps the most important education, though, will come from the way that you as the IBS sufferer respond to people when they belittle your suffering. Think about how you react when someone makes a comment about your IBS. Do you smile sweetly and ignore it? Do you protest a little but basically let them get away with it? If so, stop it right now!

 

Make a promise to yourself that from now on, when someone says something about your IBS that hurts you, you are going to let them know—politely, but very firmly—that that is not acceptable. Make sure you tell them that not only are they misinformed, they are actually hurting you. Say “I am in so much pain right now, and you are making me feel even worse.” Tell them that they are making you feel like you should be able to cure your own medical problem, and that they surely wouldn’t expect you to do that if you had a broken leg, and you surely can’t do it now that you have a broken bowel. Let them know every time you are in pain, or make a journal to record all your attacks, and make sure it is completely honest. You might find that your non-suffering friend is amazed at what you go through and how often you have been suffering in silence.

 

You can also start challenging their assumptions. The next time someone tells you that IBS is simply caused by stress, tell them that you’d be extremely interested to know where they heard that, because the last time you checked the leading gastroenterologists of the world had decided long ago that IBS is not caused by stress.

 

Ask them where they got their information. Ask them why they believe the things they do, and you might get them to realize that they actually know little about IBS. And if you want to be really mean, you can always throw in a reference to something like the Rome Criteria (the checklist doctors use to diagnose IBS), and then look sweetly bemused when they don’t know what you’re talking about. “Oh, you haven’t heard of the Rome Criteria? I don’t understand, I thought you knew a lot about IBS?!”