Many of you, the people who suffer with IBS, tell me that you feel your illness to be a stigma, a mark of shame that sets you apart from other people. But why should that be? Does society ostracise people with IBS or is it just some doctors that fail to regard it as a serious illness. Or is it you just feel ashamed of having IBS? But IBS is not morally reprehensible. You have not been found guilty of any crime. Why should any illness, let alone IBS, be considered a stigma?
Could it be because it’s a bowel disease? Faecal incontinence is regarded as perhaps the most shameful thing that can happen to us, probably because it indicates a loss of the control we all require in order to live in society. Similarly the inadvertent expulsion of gas is considerable embarrassment to most people. Both are common in IBS, but other bowel conditions have the same symptoms. They include Colitis or Coeliac Disease, but neither carries the same stigma? Indeed society appears very sympathetic to the notion of allergy and coeliac disease.
Or is the stigma more about the perception that IBS is not a real disease? There is no pathology, no cause, no definite way of making a diagnosis and treatments never seem to work. Yet the irritable bowel affliction can go on for years, causing you to take time off work, preventing you from maintaining social commitments or keeping appointments, disappointing those who are closest to you. This can lead to a suspicion that you are making too much of a minor complaint that everyone has at one time or other. Unfortunately, people’s tolerance to any illness in a relative or friend rarely lasts very long as it begins to restrict their own activity and prospects, but how much greater the intolerance if there is no obvious cause or effective treatment. Then they may become irritated and suspect you of malingering or even manipulation through the agency of your illness. As a result, you soon feels rejected, But why – just because you are ill? It is all so unfair!
And of course, you also feel fed up with an illness that no doctor can seem to explain or diagnose with certainty. Your illness is so much part of your life that people’s disregard can make you feel like you don’t exist. You are marked out, stigmatized as a non-person, one of life’s inadequates.
Add to this the implication of neuroticism or emotional instability and the circle is complete. Faecal or gaseous incontinence implies an emotional incontinence, a loss of control; at times anger, at other times fear. That would explain the common use of expletives, such as shit!, crap! or merde! as expressions of frustration. So there may be a perception that your IBS represents some emotional weakness that is wasting everybody’s time. No wonder people who suffer with IBS, like those with chronic fatigue syndrome or fibromyalgia, are desperate to find a cause that would allow them respect and an identity as an ill person. So many of you have told me. ‘At least if I had cancer or Crohn’s Disease, doctors would look after me and my husband would be sorry.’ IBS is like an invisible burden that cannot be acknowledged too much for fear of rejection.
How could this change? Well the stigma would disappear in an instant if doctors could find the definitive cause or treatment of major subsets of the illness, but despite considerable scientific effort, all that has been achieved is a realisation that most cases of IBS involve alterations in many different functional components of the brain and gut, but the balance of these, their expression and they way they might be treated differ from patient to patient. Causes and treatments may come and go. High fibre, low FODMAPs, probiotics, prokinetics, acupuncture, reflexology may all work for some of you some of the time, but nothing specific has been established, though doctors and their patients continue to engage in the grand collusion that some day they will find the cause and the cure. Perhaps they will.
When people with IBS meet together in self help groups, it becomes very obvious that their illness is not a stereotype; it is part of them, a highly individual expression of themselves and how they lead their lives. But it is not all as hopeless as it might seem. The reality is that a lot of people get over their IBS, but the way they do it often has little to do with any recognized treatment. It may instead involve a change in perception and life, like starting a new business, writing a book, changing a job, leaving a relationship. All of these, however, involve an inner change, a determination to be proactive and make things better. These people get over their IBS in the same way as we all get over the reversals in our lives.
My impression from the people who visit me in clinic or write to me is that so much of their IBS is instigated by something that happens that seriously upsets them. This is not necessarily ‘major’ trauma like rape or sexual abuse or imprisonment or war; it is more often the domestic things that severely upset all of us and knock us off track for a time. Recent years, largely through the work of people like Bessel van der Kolk, Pat Ogden, Dan Siegel, Allan Schore, Iain McGilchrist and many others, we have witnessed a much greater understanding of the way what happens (post traumatic stress) affects both our mind and our body. I have discussed this in previous posts.
But would tthe majority of you accept the possibility that the things that have happened, which might include a devastating attack of food poisoning as well as the shame or guilt of psychological trauma, could be responsible for your IBS? Or would that just be another cause of stigma, the thing that happened that cannot be acknowledged even to yourself?
If you have any observations and comments to make from your own experience, please respond to this post. I would love to know what you think.