The Irritable Bowel Stigma
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.
The Sensitive Gut 
I’m a 53-year-old man who was diagnosed only a few years ago with IBS. Yet, looking back, I realize that I’ve had it since at least junior high school. If it could be pinned to a single traumatic event, that event is lost somewhere in my distant past.
Considering that there are biological markers that a person living with IBS is significantly more likely to show, I have serious trouble believing that the syndrome can be reduced to a case of PTSD.
My own suspicion is that what we call IBS is a constellation of problems with roughly similar symptoms but widely differing etiologies. Some may indeed be PTSD-related. Others are, as some have suggested and as some of the treatments might indicate, an imbalance of gut flora. Others may be some as-yet-unidentified neurological irregularity. And so on…
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Thank you for your comment. You may, of course, be absolutely correct. We may see a number of conditions with the same range of boWel symptoms, but with specific treatments, in the next few years. That would certainly be the medical model. We have already started to see a number of different abnormalities in the microbiome, the gut immune system, the brain gut axis etc, but the frustrating thing with regard to finding discrete causes is that most of these seem to occur together. We must certainly keep looking at the stars!
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I doubt any illness can totally stand alone in cause and effect- everything is linked to the brain, transmitting physically and/or emotionally , and every dis-ease has a knock on effect to other areas/symptoms within the body. I am inspired by your continued work Dr Read to unravel the complexities associated with IBS and keeping all sufferers informed, educated and helped via the IBS Network.
My own scenario was a result of an operation, but when I look in to the phsychological aspects that you recommend as relevant, the weakness was probably bubbling away for 16 years in a relationship where I was walking on eggshells daily. The trauma of the operation probably burst the bubble. We cope and live with these things without realising the underlying damage that is happening inside – a good analogy is a whiplash injury which could have occurred many years previously but oftentimes surfaces a lot later on, and by which time it is a lot more difficult to rectify or treat, and has caused postural/joint/muscle problems in relation to it and therefore more pain/discomfort to address in other areas of the body.
A younger friend with IBS was indoctrinated as a child from his mother telling him to go to the toilet before going out anywhere, saying she would not stop on a journey or once out if he needed the toilet. So he now has virtual panic attacks about where he can access a toilet before going anywhere and oftentimes will not participate in activities if he doesn’t have the security of knowing a toilet is nearby. A perfect example of a mental trauma resulting in a physical condition which is now chronic.
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Thank you, Cheryl, for your generous comments and for allowing us to have insight into your own IBS narrative and that of your younger friend. They are both very instructive. You explain well how the physical effects of difficult or upsetting things that may have occurred the several years previously, can surface a lot later on when something else rekindles the body memory and how anxiety over the toilet early in life can remain ingrained well into adulthood.
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One thing that I think perhaps does get overlooked too is the impact and effect of hormones – I can’t speak for men obviously, but IBS symptoms for many women can often be much worse around the time of menstruation. Why is this? Do certain hormones sensitize the gut? Or is it the hormones effect on emotion and feelings that then affect the gut. Could some form of treatment involve regulating hormone production? Do women still get IBS just as intently if they are on the pill or HRT? Or is it even worse for them? A very interesting topic. Thanks Dr Read.
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Thank you for your comment, Lizzie. You raise some important questions. Look at my previous post on ‘Why do women get more IBS than men’ in which I reported how women tended to become more constipated towards the end of the menstrual cycle when oesopgen and progresterone are at their highest, but teneded to get diarrhoea during menstruation. Also there is evidence that sex hormones sensitise the gut and make women more ’emotional’ In some women, IBS is better after the menopause, but in others it is worse. Similarly HRT can rekindle IBS or it may calm it down. Confused/ So am I. But I will earmark this for another blogpost and try to make some sense of it.
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I asked for help when I was 13. I was told I was a lying whore who was probably pregnant. I was told I hated school and just didn’t want to go (I was a straight A student who loved school and am now a professor), I was told I was making it up… I gave up and now just live in terrible pain. It’s gotten so much worse over the last few years. My poor kid now just says things to me like, oh god you aren’t throwing up again are you…. But I asked for help multiple times from Kaiser and apparently they don’t believe me or care.
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