Thursday, 19 June 2014

Don't Feed Us This Crap



Yesterday morning, Dr Sally Mitton, a gastroenterologist at a London hospital, said on BBC Breakfast that Crohn’s Disease is caused by eating junk food and being over prescribed anti-biotics. This understandably made a lot of people angry. Namely, those of us who have Crohn’s Disease, yet did not grow up eating burgers and washing down anti-biotics with diet Coke for dessert, followed by a doughnut chaser. Everyone I have ever known or spoken to with Crohn’s Disease, in fact. Certainly, the very very many of us who took to Twitter to decry this nonsensical, offensive theory, and to ask BBC Breakfast to apologise. (I didn’t ask them that, but several people did.)

Having had Crohn’s since I was about 4 – when I was diagnosed at 19, I was told that the advanced state of my disease meant I had had it for at least 15 years – there was little time for me to have downed anywhere near enough junk food, or ill-prescribed antibiotics to cause such a terrible disease. I prefer the general understanding in the medical community, which is that it is a genetic disease. Factually, it is an autoimmune disease, which basically means the body attacks itself. I know Kentucky Fried Chicken can be seen as evil, but I don’t accept it has that kind of power.  As for the others – McDonalds and the like – they weren’t around yet, so we can’t blame them at all.

In the many years that I’ve had Crohn’s I’ve seen a few theories come and go – toothpaste was one. I do brush my teeth, so I wondered about that for a while; I even used a toothpaste from the health food shop for a week or two, but it tasted disgusting and I wasn’t convinced it was cleaning anything, plus I already had Crohn’s, so the whole exercise seemed a tad pointless. Another one was cornflakes. I hate cornflakes. I hated them as a child, I hated them as a teenager and I still don’t like them – not even covered in chocolate and stuck together in a gooey lump. So cornflakes didn’t cause my Crohn’s. Add to that the cures that show up every now and again – milk thistle, quinoa, most recently tree bark, though there’s only the word of one woman for that, and she’s not telling what the tree was. In the way of the truly altruistic, she will only tell Big Pharma, and then only for a considerable sum of money. Bless her. They’re all bollocks, of course. There is no known cure for Crohn’s and no known cause.  This is what research is for. This is why those of us with it want to raise awareness.

People don’t talk about Crohn’s, because it involves talking about poo. It’s not sexy, it’s not polite, and it’s not dinner table conversation. Those of us who have it would love people to be discussing it, wondering about it, forcing more money to be put into researching and preventing it. Curing it would be great, too, but one fantasy at a time.

I missed most of the drama yesterday, because for me, yesterday was one of my good days. In more than three months of a horrible flare, yesterday was a day when I got up and went out.  I went into town with my son, and we wandered around shops, ate lunch in Covent Garden – mussels, not junk food; I’m not sure I could’ve found junk food in Covent Garden, had I wanted to, which I didn’t because I don’t eat junk food, and yet I have Crohn’s; go figure.  I had a delightful, normal day, and when I came home, I felt like crap. And then I opened my laptop and saw a couple of comments and questions about Dr Sally Mitton. So I googled and I watched the BBC Breakfast package, gobsmacked, and then I went on Twitter and got angry and saw that Carrie Grant, she of the lovely singing voice and fabulous hair, who also has Crohn’s, had written a brilliant letter to Dr Mitton, very politely suggesting she should have had media training before going on television, and graciously assuming that she hadn’t meant for her interview to leave the nation’s press with this nugget of misinformation – a theory at best, with no proof offered – which all but blamed some 250,000 people in the UK for causing their own debilitating, sometimes fatal disease.  You can see it on her timeline on Twitter.

Never mind that David Barker, CEO of Crohns and Colitis UK was on the same broadcast to talk about the very real problem of fatigue in Crohn’s and Colitis patients. That wasn’t interesting enough for the BBC, or indeed the Telegraph, whose science correspondent came up with this yesterday afternoon. Check out the first paragraph; looks like a statement of fact to me. It isn’t, of course. It’s a parroting of what Dr Sally Mitton – and nobody else that I have heard, ever – said.

Today, The Daily Mail (unsurprisingly) and The Times are running similar pieces, with screamy headlines claiming the junk food theory as fact. The Independent ran the story too, but they had the decency to put the theory in quotes.

I tend not to shout  too much about Crohn’s. For me, it has led to my ileostomy, and raising awareness of that seems more urgent in my world.  To normalise the fact that some of us, as a result of various diseases or medical needs, have a bit of our intestine hanging out of our stomach, over which we stick a bag, into which we poo.  That whole running to the loo up to 30 times a day in screaming agony thing is in the past for me. I still get the pain, but I don’t have to run to the loo with it. Except when my bag needs emptying. Other than that, I can howl with pain wherever the hell I want. But I do still have Crohn’s, and it does impact my life, and those of my family and friends, on a daily basis. I haven’t been cured by having a bag, but I have definitely had my life made easier.

And then a thing like this happens.  A doctor says a stupid thing that she probably didn’t explain properly, or her speech got cut to make it look like it was the only thing she said, but whatever the reason, the result is a whole load of backward steps for Crohn’s information and for those of us who have it. A Twitter pal from the US told me the story was even making news over there – that’s how powerful the media is. That’s how irresponsible it is to present a theory as though it is a fact, whether you mean to or not.

You don’t have to be a doctor to spout a meaningless theory of course; over the years I have had ‘friends’ whisper that I have Crohn’s because I am a) Jewish and b) was brought up in a house that was too clean, so I wasn’t exposed to enough dirt. These ‘friends’ didn’t know me when I was a child, but I can promise them my parents weren’t the insane, bleaching everything that stayed still kind. I ate dirt in the garden just like every other kid born in the ‘60s. But people still have these ideas, and someone put them there.

Dr Mitton’s interview lasted but a few minutes, the repercussions of it are now on to their second day. Before long, it will be another stupid thing people think.

6 comments:

  1. I have the occasional bout of ibs. I can feel a bit sorry for myself during one. I don't know I'm born. This is a horrible situation. It beggars belief that a few ill judged words can belittle the very real pain and suffering of so many people as well as lead the rest of the population to believe that it is all your own fault. We need less ignorance, not more. I'm sorry.

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    1. IBS is horrible, too; I'm sorry you have to deal with it. The media are responsible for jumping on this unsubstantiated nonsense, and it's despicable. We do indeed need more information and less ignorance. Sigh.

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  2. Great blog! Well done. I also responded on my blog if you're interested: http://elledubz.tumblr.com/post/89347586052/response-to-bbc-other-uk-press-re-ibd-junk Keep up the good fight!

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    1. Thanks. Just read yours and loved it! Have signed up to follow you. Fight indeed!

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    2. Thanks so much! Power to the people :)

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