We often hear what Irritable Bowel Syndrome (IBS) is, but not what it is not. Unlike chronic constipation, which can be gut-related and life-long, IBS usually takes shape after a severe stomach upset. There are about half a million people in the UK with IBS and it is considered to be a common problem that is under diagnosed. Not that anyone is allowed to call it that. Although the condition is considered a very common disorder, everyone experiences it differently. The thing is, not everyone experiences it together.
If you suffer from chronic irritable bowel syndrome, you’ll be in good company – according to the research commissioned for IBS Week, myths about the illness have left many people unable to get a diagnosis or treatment. IBS.org.uk, the website which runs the event, says there are 45 million worldwide living with the condition, but very few are diagnosed. In countries like Australia and Canada the figures are 35 and 39 million respectively. Why?
Psychologist Helen Dudman thinks that at a time when we talk a lot about personal development, wellness and well-being, and are encouraged to make positive lifestyle changes, getting a diagnosis is tough. “Research has found,” she says, “that there are too many things that people think IBS is not – everything from the lifestyle choices to stigma. People stop believing they have it when they hear IBS in all those scary words. Then they feel alone.”
Professor David Williams agrees. “In this fragmented era of advertising and social media,” he says, “IBS needs to become a part of the diagnostic lexicon. It needs to go to the top of the agenda.”
There are lots of misconceptions – while IBS is more common in those on the lower end of the socio-economic scale, it is often claimed that everyone with it is a millionaire. (Bendit is quite right – yes, some with IBS can make a fortune – but it has more to do with the law than genetics.) The condition is also said to affect men more than women, that it’s the number one inveterate potty-roller, that the onset is as intense as childbirth and that it’s spread by dirt and stinking hands.
The daily news is littered with stories of the terrible aftermath of a hospital IBS operation, and yet we still talk about a lack of funding when it comes to healthcare. Why not encourage more data collection on all the myths we have so happily allowed into the culture? Anyone who’s read Eleanor Catton’s The Luminaries will tell you, even though an IBS diagnosis is more common in women than men, that there’s still a stigma and idea of “weakness” associated with it. Men – along with lack of surgical success – is all it takes for IBS to get you written off.
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Dudman says that’s why people often hide their illness, in part because the management of it is often complicated and it is used as a coping mechanism. “I’ve seen patients humiliated because of the way they are perceived. They are afraid their GP or their friends will assume they are unwell,” she says. “I feel like a crock of shit when people call me ‘Irritable Bowel syndrome’.”
Williams says it’s worth trying to define your own symptoms and get help. “Patients often think they are less than perfectly well, or they may have self-harming behaviours,” he says. “They are experiencing real distress.”
Much the same applies to psychological issues. It’s important to get someone to help you when they will if you get the full truth. Get clear on what irritates you, and get support. Don’t be ashamed of feeling upset – you are in good company.