A different kind of top 10 list

Searching the Internet today I ran across a blog written by a young lady named Sophie called IBS Tales. I copied and pasted this list right from her site because it is all SO true! Having suffering from IBS since I was in high school, I have gone through all you can go through with it. It's embarrassing and unpleasant. But it is.

Top 10 stupid things said to IBS sufferers...

...and the reasons why they're so dumb.

IBS sufferers often have to listen to all kinds of ridiculous comments and suggestions from non-sufferers - some are well meaning, and others are just plain hurtful. Here's my Top 10 list of the most common cretinous remarks that are directed towards us, along with the reasons why they're so dumb.

1. “If it is caused by something you eat then you should avoid that food to feel better.”

Now, on the face of it, this is a perfectly logical thing to say – if you are doing something that hurts you, such as ramming a skewer through your foot, you are best advised to stop that activity.

However, the trouble with this particular piece of logic is that it assumes three things. First, that food is the cause of all IBS symptoms; second, that you know exactly what food is causing the trouble; and third, that you can easily eliminate that food without causing any more problems. None of these things are true.

This particular quote does make me angry because it also assumes that you, the IBS sufferer, are such a complete and total moron that you don’t even have the mental capacity to stop eating, say, oranges, even when every time you eat an orange you get sick. It is just not that simple.

2. “You should go to the toilet before we leave so we don’t have to stop on the way.”

This one shows that the speaker has not really grasped the phrase “irritable bowel”. It is not a bowel that malfunctions but then pulls itself together when we need to go visit Great Aunt Flo. Nor is it a bowel that can be relieved and then put back to sleep.

If I am going to have diarrhea in the car then that is where I am going to have diarrhea, whether I have been to the bathroom beforehand or not.

3. “Why don’t you just try this lovely bread/pizza/chili, I’m sure it won’t hurt you.”

A rough translation of this is as follows:

“Why don’t you just eat a little of this food that gives you stomach pains that feel like there’s a chainsaw-wielding hacksaw-waving madman inside your intestines, I won’t be the one who has to deal with it and I’m a generally insensitive burke.”

Or words to that effect.

4. “Oh yes, my mother had IBS, but she took a pill from the health food store/ate some bran/stopped eating oranges and now she’s cured. Why don’t you do that?”

Oh let me count the reasons. If your mother took one pill and was cured she did not have IBS. If I took one pill from the health food store I might be a bit healthier but I would not be cured of IBS.

Furthermore, to assume that what ‘cured’ your mother’s IBS will cure mine is a little naïve, don’t you think? Does it work that way for any other illness – do all diabetes sufferers do the same thing to cure themselves, do all arthritis patients stop eating oranges and get better?

Do you say this kind of stuff to cancer patients?

5. “Everyone has IBS these days, it’s a result of the high-stress long hours culture.”

Funnily enough, this one I have a bit of time for, and the reason is that anyone who says this is perhaps partly right. A lot of people do find that if they work 60-hour weeks, eat junk food and drink gallons of coffee that their digestive systems protest rather loudly.

However, that, I believe, is different from ‘true’ IBS, for this reason – these people also find that when they stop working so hard and start eating a more balanced diet their stomachs go back to normal.

I eat a good diet, don’t work too hard and never drink coffee and my stomach is still pathetic. A lot of people get diarrhea and constipation from time to time, but they don’t have IBS.

6. “Why don’t you go to the doctor?”

I love this one. It’s partly the idea that, again, the IBS sufferer is so brain-addled that the very idea of going to the doctor has not occurred to them – they’ve tried asking for advice from the paperboy but he really wasn’t that much help.

And I also love the complete naiveté of the person who thinks that doctors cure everything. How on earth did they reach that conclusion? I suppose some people go to the doctor once every five years for hay fever and get given some tablets and get cured. So, naturally, that’s how it works for us as well.

But of course, everyone from the arthritis sufferer to the stroke victim to the Crohn’s disease patient knows that often, all doctors can do is help you manage your symptoms, and sometimes they don’t even do that.

Unfortunately, IBS patients are often treated quite badly by their doctors. This is to an extent understandable – if I was a doctor I would want to have as few IBS patients as possible, because let’s face it, we can be pretty difficult to treat.

However, this does not excuse the fact that IBS patients sometimes come out of the doctor’s office feeling worse than when they went in. They feel like the doctor belittled their symptoms, or implied that if they just stopped stressing over it their problems would go away. Doctors are not the source of a miracle cure.

7. “You’re only talking about your symptoms to get attention.”

To be honest, I’d hope that your wife/husband/friend would never dream of saying this one, but it’s certainly something that has been said by colleagues and acquaintances of suffering IBSers.

And you can see where they’re coming from. If I were feeling unwanted and in need of some attention, the first thing I would do is pretend to have a bowel problem.

Yes, listen up all you lonely people – all you have to do is tell people that you are so constipated you haven’t pooped for three weeks and you get all the attention you want.

8. “I know that you have IBS but if you don’t go to this meeting/go on this trip/take this course then you’re fired.”

Most employers, of course, are not as obvious about it as this, but that’s often what they mean. IBS sufferers often find that they have to take a lot of time off work, and they sometimes miss very important meetings or events.

But what are they supposed to do? Turn up to the meeting and sit there in excruciating pain? Turn up and run to the bathroom every five minutes, while still in excruciating pain? Turn up to the meeting and crap themselves to prove they’re ill?

If they could come to the meeting, they would. And, from what I know, they often do. You’d be amazed at how much sufferers put up with, how much pain and discomfort they can ignore just so they get to turn up to their jobs and earn some money.

If there were a visible sign on every sufferer to show just how much pain they were in then no one would accuse them of malingering.

9. “What do you mean you’re ill again – I thought you said you were feeling better?”

Well, yes, I did say that, but that was last week. This week I feel like death. Next week I may feel like a banana. It varies quite a lot, you know.

You get better after having a cold. If you have IBS you get better periodically and sick periodically, in a lovely little cycle that goes on and on and on.

And, finally, the most over-used phrase in the IBS universe:

10. "It’s all in your head.”

This is, to my mind, just about the most unsympathetic response an IBS sufferer can get. How is it helpful, how is it supportive? What on earth are you trying to say – that if I just had the courage, the self-possession, the huge emotional capacity that you yourself posses, I could control my bowels?

Because, after all, this is how you control your own bowels, is it not? Every day, through a magnificent feat of emotional ability, you direct your digestive system to work smoothly, and if I could just do this too I would be well on the way to good health.

Wait a minute, you say you don’t control your bowels with your mind? What do you mean you just go to the bathroom when your body tells you to – I thought you had a sophisticated mind-bowel control system going on?

So that’s the first thing – bowels are not controlled by our heads. Yes, if you get nervous then you sometimes need the loo, and yes, there is obviously some mind-body thing going on that causes some emotions to affect the bowel.

It is also true that there is a strong school of scientific thought today that says IBS is caused by a complex mind-gut interaction, which leaves IBS sufferers far more sensitive to pain and normal gut contractions than regular people.

But that is not what you are saying, is it? You are saying that my entire IBS experience, for 15 years, through good and bad times, is caused by the fact that I am neurotic. And this is total rubbish.

Not only does this response dismiss all of the theories and evidence for causes such as food intolerance, as well as completely ignoring the fact that IBS sufferers could no more control mind-gut interactions than depressives could control the level of chemicals in their brain, it also places all blame for the illness squarely at the door of the IBS sufferer. “It’s your fault”, they are saying. “Get a grip, snap out of it.”

What a load of old rubbish. If anyone says this to you, I want you to demand a 100-page, scientific, peer-reviewed, footnoted paper on why they think it is true. And then I want you to hit them quite hard with a brick.

Disclaimer

You may be reading this and thinking “Wow, this girl is angry!” It may even be that you are a non-IBS sufferer and you have said some of the things listed above, and thought they were perfectly rational and helpful things to say.

And, at the time, with the knowledge you had, they probably were. I do get angry at the way IBS sufferers are treated, but I also know that the vast majority of these hurtful quotes are the result of ignorance rather than malice.

I am well aware that my own knowledge of, say, diabetes is dismal, and if I were faced with a diabetes sufferer tomorrow I might well blurt out some piece of gibberish such as “Can’t you just eat half a mars bar?” and wonder why they took offence.

Basically, we need understanding on both sides. Non-IBS people need to try to understand that IBS is a complex, difficult, embarrassing and long-term condition that can be very painful.

And IBS sufferers need to understand that, if you don’t have bowel problems yourself, you probably don’t spend as much time reading and thinking about them as we do.

If you are a non-sufferer and you’re reading this website because your loved one or friend has IBS, then I would like to say thank you. Just by reading something on IBS you are showing that you care enough to find out more about their condition, and that can be the difference between a helpful friend and a hurtful one.

Second disclaimer

Please don’t hit people with bricks.

Sophie