Today I want to vent my frustration at some of the stories in the media about IBD lately. On the one hand, when I see IBD in the headlines I feel a surge of positivity that this disease been increasingly written about and spoken about. After all, there's no such thing as bad publicity, right? All digestive disorders are a little bit taboo so you'd think the more we shared stories about them, the better chance we would have at increasing awareness and thus helping with public understanding and earlier diagnosis.
However, this doesn't seem to be the case. The stories that feature in the media lately range from the dangerous misinformed to the intentionally comical (at least that's the desired effect; I'm certainly not laughing!) Here's 5 misrepresentation of IBD that I've spotted in the media recently:
1. Making a joke out of symptoms. The Sun recently ran an article about Seb Tucknott, who is actually a great activist of raising awareness of IBD. As part of the promotion for his new site (www.ibdrelief.com) many newspapers wrote about his experience with the disease. The Sun, however decided a serious illness wasn't going to get in the way of a bit of casual banter and ran with the headline: 'Stress of son's birth was so bad (he) had to go to toilet forty times a day' with lots of jokes about his wife not being happy thrown in for good measure. Of course there was no mention of the fact he had IBD in the title, making it seem as if it was fear of becoming a father that caused this and not you know, an actual disease.
2. The numbers game. Media coverage seems obsessed with the amount of times IBD sufferers go to the toilet. While I don't doubt this is what defines some sufferers experiences, it completely ignores the wide range of other symptoms people experience. Many sufferers may not even experience multiple toilet trips but instead have fatigue, abscess and mouth ulcers. There are millions of stories of those who appeared to lose 10 stone in a day (okay, I'm exaggerating now!) but what about those of us who remain a steady weight or shock horror gain weight from all the medication we're on. This obsession with the most headline-grabbing symptom of IBD is doubly dangerous since it convinces possible sufferers that their symptoms aren't as serious (and thus delays them in seeking help) and means doctors tend to focus on these as main diagnostic measure.
3. The use of an expert who states the obvious. Sam Faiers has recently given birth and in the lead up to the event, headlines circulated online such as: 'Experts Warn Pregnant Sam: Keep Your Crohn's under control.' Why subject her to silly articles that state the obvious? Here, it makes Crohn's seem almost like a naughty child that Faiers has to discipline. When going ahead and reading the whole article, all the expert stated was it's important for any patient of Crohn's to keep the disease in check while pregnant. Common sense that we didn't really need an expert to tell us. Articles like this should be positive reading for young women who may worry about trying to conceive with IBD, rather than sensationalising the possible negative implications.
4. The fact checker not bothering to check the name of the actual disease. Every big media outlet usually has a fact checker, but it seems that the ones in charge of IBD articles, don't actually bother to check anything (other than you know, the number of times IBD sufferers go the toilet.) However, it's not like anyone will notice if they refer to IBD as Irritable Bowel Disease right? And whose to say 'Crohn's syndrome' isn't a real thing? These are usually the same articles that quote the experts in number 3, which makes me think- does anyone who writes about IBD know what they're bloody talking about!
5. The 'insert random object' cured my IBD story. Tree bark? Mouldy Bread? Standing on your head for ten minutes a day ? (the first 2 were real but I made that one up). IBD is one of those diseases that can't actually be cured (but instead put into remission) by the cocktail of drugs that many of us take. But where's the story in that? Instead, many publications run stories in which the suffer was in complete agony and now have no symptoms what so ever since trying this new and inventive method. Not that they seem to have had follow-up appointments or routine colonoscopies; instead they just rely on the fact they now feel great!
So what's the impact of all this? Well for most of us, this media coverage can make it harder to live our lives. It means the people around us make misguided judgments with the best of intentions. They read the cure articles and forward them to us in excitement because they want to make us feel better. They read the description box of the disease and express confusion because we're not losing weight or being rushed to A&E. Perhaps they even think we're making it up since we look nothing like the poor person in the article.
What about the workplace? Bosses might express alarm at promoting someone who clearly spends a significant proportion of their time in the bathroom without actually asking how we're doing. And for those who are awaiting diagnosis? Perhaps they struggle to be taken seriously because their symptoms don't match these media cases.
IBD is becoming more and more common yet we seem to know less and less about the real facts of this disease. What is needed is accurate media coverage that helps and informs rather than scaremongers and discourages. As fighters, perhaps we too need to try and educate ourselves and others as much as we can by reading and spreading the word (since the media can't do it accurately on our behalf). Whether it's through new treatments, dietary self-help or honest conversations with your doctor, the best shot any of us have of tackling this disease is keeping ourselves as informed as possible. After all, how can the mainstream media offer us accurate information on a disease it can't even spell correctly?
This post was first published on the healthy lifestyle blog www.abalancedbelly.co.uk