When defining the term ‘invisible illness’, there are likely few examples that fit the bill better than irritable bowel syndrome (IBS).
Even though the condition is a fairly common one – prevalence estimates tend to range from anywhere between one and 20 percent of the population – it’s still relatively poorly understood. And not just by the general public. Even today, IBS is still often subject to misdiagnosis in a clinical setting and being mistaken for something else, largely because the symptoms can differ from person to person and vary in severity.
More people know about IBS today than they used to, and this is in part due to campaigns such as IBS Awareness Month, which runs over April.
But creating understanding takes time. Some people might still experience symptoms without knowing why they might be happening and, due to the nature of these, either put off seeing their doctor or simply not go at all. And more or less every person with a confirmed diagnosis of IBS will have encountered someone who dismisses it as ‘just a stomach ache’ or ‘a case of diarrhoea.’
Which of course brings us back to the term ‘invisible illness’. People with the condition do face obstacles, not just because of the unpredictable nature of symptoms, but also because they don’t feel like they can talk to people around them about their symptoms – for fear of being misunderstood, or because it’s a personal subject. While we might think of an invisible illness as a condition other people can’t see, it’s often also a condition we can’t or won’t tell other people about.
All of this, for a person living with IBS, can have a cumulative emotional and psychological effect. IBS isn’t just stomach cramps, feeling bloated, constipation or needing to go to the toilet more often. For some people it’s fatigue, difficulty concentrating in professional or social situations, and everything that comes with not being able to predict when symptoms might crop up.
We thought it might be interesting to look into the emotional aspects of IBS in more detail.
HealthUnlocked is home to a forum run by the IBS Network, with over 7,500 active members, many of whom have shared their own experiences of dealing with the condition. In partnership with HealthUnlocked, we ran a keyword analysis for a number of emotional and psychological terms, to see what kind of feelings people talking about IBS discuss most.
Here’s what we found:
Across 86,000 posts:
- ‘Anxious’ or ‘anxiety’ was the most commonly used term, with 7,638 mentions
- ‘Stress’ or ‘stressed’ came in second, with 7,010 mentions
- and terms relating to ‘worry’ including ‘worrying’ or ‘worried’ came in third, at 5,153 mentions.
To follow this, we also ran a poll asking forum users what about IBS in particular causes them to feel anxiety:
Out of 299 voters:
- 194 (63.7%) said ‘the symptoms’
- 163 (53.5%) expressed that it was ‘how it affects my social life and relationship(s)’ that made them feel anxious
- and 133 (43.6%) said it was ‘having to be careful about what I eat’.
Users were able to select multiple options they felt applied to them.
So what does this suggest? Probably little that people with IBS didn’t already know: that symptoms play a huge role in causing stress and anxiety, and vice versa, perpetuating an ongoing cycle.
In the comments, many users expressed in particular that their anxiety centred around access to a toilet, or not being able to get to a toilet in time.
What might make for surprising viewing though is that ‘how the condition affects relationships’ was placed second, above ‘having to be careful about diet’.
This reveals the potential wider implications the condition can have on someone’s life. For someone with IBS, anxiety isn’t just about the practicalities of food choices and dealing with symptoms. It relates to how other people view them as well.
The poll doesn’t go into this much detail, but this could be rooted in how other people view the condition, and anxiety around stigma. It’s also conceivable that this could also relate to how people with the condition think other people view their behaviours. An example might be not wanting to do an activity because they’re worried about symptoms preventing them; or something much more fundamental such as the capacity to be intimate.
What this data should help to do is illustrate to others – whether it’s people who have little experience of IBS, or those who know or are close to someone with the condition – the emotional and psychological toll the condition can have.
‘The results are probably a bit of an eye-opener for those who are in relationships with IBS sufferers, or work colleagues of people living with IBS.’ explains Dr Daniel Atkinson, Clinical Lead at Treated.com. ‘Hopefully, it might help people who aren’t familiar with the condition to be considerate of the actions that people with IBS might need to take, whether it’s skipping that work lunch date, choosing a seat closer to the bathroom, or opting to go home a little earlier during a night out.’
‘And in addition to the symptoms, there’s this whole other side of IBS people don’t consider, which is the stress. I’ve met a lot of patients who, after learning they have the condition, have needed some time to become accustomed to the lifestyle changes that need to be implemented in order to minimise exposure to a trigger.’
‘So for a person with IBS, learning to live with the condition can often be, among other things, a great test of patience. If you’re in some kind of a relationship with that person, be it a personal or a professional one, being mindful of this can go a long way towards helping them adjust.’
You can read a detailed analysis of the results over on the Treated.com blog.
Written by Adam Gilmour
Adam Gilmour is Head of Content at Treated.com. He and his team work with clinical practitioners and other organisations to produce content on a wide range of health and wellness issues.