There was a painful article in the Guardian newspaper a while back, written by a journalist who had lost his 13 year-old son to cancer. Matthew Engel describes life before and after the cancer (“We were not quite as happy as we bloody well should have been”), and also how he coped with other people’s reactions to his son’s illness.
Reactions ranged from extreme empathy, practical help, and genuine selflessness, through to complete insensitivity. The reaction that really struck me was this one: “I’m sorry about your news. I’d hate it to happen to my son.”
Now, I’m going to go from talking about a fatal cancer to talking about IBS, so I just want to say that I don’t compare the two for the moment – Mr Engel and his son suffered appallingly, and there’s just no comparison to be made. However, I do think that all of us human beings need to consider carefully what we say to people who are sick and suffering.
In particular, we need to avoid the kind of selfish impulse that is found in that statement – “I’d hate it to happen to my son”. Because that isn’t sympathy, and it’s certainly not empathy. What that person is thinking is clearly “Thank God my family’s alright, thank God it wasn’t us”.
And that’s understandable, that’s a human response – up until the point where you actually say it out loud, and then it’s just crass.
I occasionally get people who write to me, telling me about their IBS, and it turns out that they’ve suffered for a couple of months, or they only get symptoms once a year, and that’s fine, I can cope with that. But it’s also pretty clear from the way they phrase their email that one of the reasons they are writing to me is because they are pleased that they haven’t suffered for 16 years, or had the symptoms that I have had. They are relieved not to have suffered like I have.
It’s a fine line. If you say “I’m so sorry to hear about your suffering” then that’s great; if you say “I can’t imagine living with this for 16 years, I’d hate to have to do that” then that’s maybe borderline. If you say “I’m so glad I just have a mild form of this disorder, you must be so brave, I’m really so glad I’m not like you” then I would say that was taking it a bit far.
It’s a difficult one though. I think that a lot of us probably say the wrong thing to people in pain, which is why lots of different groups of sufferers have their own pet hates – IBS sufferers and the “all in your head” notion, ME sufferers who get told to make more of an effort, depression sufferers who are supposed to keep their chin up and look on the bright side.
Maybe the solution is to listen more, and talk less. And if you find yourself thinking “Thank God I don’t have your problem”, make sure you keep it to yourself.
5 responses so far ↓
1 Mariah // Aug 9, 2006 at 4:15 am
I have had diarrhea/gas/cramps type IBS for several years. I really hate it when I occasionally tell people that I have IBS (usually as an explanation of why I can’t eat what they are offering me at work or somewhere else) and they say “oh I have that too!” Then it turns out that what they MEAN is that if they eat at McDonalds several times in one week, or drink too much coffee, they get some diarrhea! That’s not IBS, folks. I haven’t had coffee in years, and I can’t eat anything fried — I get sick within minutes or hours. Oil, grease, dairy, chocolate, coffee, all the fun foods in life — they make me ill. Most people really have no idea how limiting and horrible IBS is. I am so jealous of people who can drink a cup of coffee in the morning! And I hate the people who act like I am strange, or just neurotic. Hello, people, if I had diabetes or asthma I would get plenty of sympathy. Many people with IBS suffer a lot more pain and limitation than people with “real” diseases!
2 antoinette upchurch // Aug 9, 2006 at 6:45 pm
I suffer from IBS really bad. Certain things trigger worst than others. Sometimes I hate to tell my family and friends, becaise I feel they think its unbelieveable. The pain is terrible. When this episode passes I plan to stick to my diet, because it really hurts and it takes time when you have a bad episode. But for all you who suffer I hope, you feel much better.
3 Sue // Aug 23, 2006 at 4:00 pm
I agree with all the comments about other people not appreciating how debilitating IBS can be. For instance, I cannot stay in hotels/with relatives/have my partner stay over at the moment because I am in the grip of an attack (for the past 8 months) because if I have the euphamistically phrased “flatus” through the night, I have to change the bed linen, or I have to wear incontinence pads. Hardly conducive to romance! Sorry folks, but that’s life! I am trying to educate work colleagues who think that they, too, have IBS because they have a stomach “pain” after eating, and the runs that last oooh, at least ten seconds out of every year. Sorry to be cynical, but you sufferers out there will empathise! If I have to take time off work because of the IBS, I make sure I report that “it must have been something I’ve eaten”. Telling my bosses that it is because of my IBS is tantamount to saying I’m off ill because of a hangover! I know that’s a paradox – I’m all for educating everyone about IBS – but I’m too much of a wimp to admit to suffering from IBS. And don’t get me started on the comments that have been made after someone goes to the toilets at work after me! I put it down to the drains – well, wouldn’t you, being honest??!!
4 Amy // Sep 20, 2006 at 4:01 pm
Im off sick with ibs again its been about 4 days now.Im depressed .I dont want to go any where.Does any one else get tired of being told go to the doctor?Ive been to four doctors they either say its in my head or something I ate.It seems like a waste of money but what am I going to do?I have to work.Right now im waiting for some probacteria crap thats supposed to work wonders.I hope so.I just want to be me again.I hate this illness because I feel like im losing myself.I feel uncomfortable and in pain so much.I also feel very shy.I hate the bloat and the gas.I take stuff for it but I dont see a big diffrence.Ibs is robbing me of my life.Im going to go read happy tales now so I can pull myself out of this funk.Im constantly lying to every one and saying I have an ulcer.Its got to get better.Its been going on for 9 years.
5 evie // Nov 25, 2008 at 10:37 am
I’ve been off work for 2 months now & things don’t really seem to be on the up. The pain is dreadful. Awful. Being a prisoner in my own home, near my own bathroom, is dreadful. I know other people who have a diagnosis of IBS & like you say, they think IBS is having diarrhoea after necking loads of wine. These people (I’m thinking of 2 in particular), have a couple of days of mild discomfort after over – indulging in greasy food & alcohol. What I am experiencing is not like that.
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