‘A predominant theme [in a study of IBS patients] was a sense of stigma experienced because of a lack of understanding by family, friends and physicians of the effects of IBS on the individual, or the legitimacy of the individual’s emotions and adaptation behaviors experienced. Patients described IBS not only as symptoms (predominantly abdominal pain) but mainly as it affects daily function, thoughts, feelings and behaviors. Common responses included uncertainty and unpredictability with loss of freedom, spontaneity and social contacts, as well as feelings of fearfulness.’
Drossman and colleagues12
In this chapter we look at what life is like for people with IBS, the difficulties they might be facing and how such problems contribute to a reduced quality of life. Having one thing that makes life difficult might not be too bad, but to have to face multiple difficulties can be very challenging indeed. We also offer advice on what can be done to better manage life with IBS.
‘IBS and its symptoms are not a triviality or a figment of one’s imagination – the pain is really debilitating, and not something I wish for, or knowingly bring on. It just happens!’
Maria
How do we know what it’s like to have IBS? Until the 1990s, we didn’t know much. Books written on the subject tended to be for people who were medically trained, and apart from a book and a few small leaflets there was no detailed advice on how to cope with the condition and no information on patient perspectives in publications relating to IBS. There were no known self-help groups and most people had to cope the best they could with this limited information.
Now we have many books on the subject and studies that look at the views of people with IBS themselves. We know how much IBS affects people’s lives and the ways in which they cope. There are studies that analyse the ways that patients make sense of their disease, the ways their lives are affected and the problems they have with healthcare professionals, friends, families and workmates.
People with IBS have to cope with painful, unpredictable and embarrassing symptoms. These symptoms are largely hidden from others, except when they are told about them. Research studies show that IBS leads to a worsening of quality of life, problems with relationships and feelings of shame and stigma. However, most people with IBS are coping well with a disease that is still misunderstood by many people.
IBS, ME/CFS, inflammatory bowel disease, Meniere’s disease and any disorders or conditions that have unpredictable symptoms make day-to-day living difficult. One study carried out by a Norwegian team led by Professor Marit Rønnevig looked at the experiences of people living with IBS13. The team carried out open-ended interviews and the top theme that emerged from people’s accounts was ‘living with unpredictability’. People with IBS felt out of control, constrained and dependent. Other studies also showed that the symptoms of IBS affect daily life, with unpredictability and uncertainty being a big problem. In Chapter 7 (page 107) we’ll explore some strategies that can help with this unpredictability and any sudden attacks of IBS symptoms.
A particular problem for the people in the above study was the unpredictability of symptoms such as diarrhoea or urgency when out of the house. Sometimes the symptoms came on really suddenly and then they had to find a toilet very quickly; what they feared most was not reaching a toilet in time.
‘The IBS affects so many parts of my life: family occasions and my enjoyment of them, holidays when I am in pain, and my intimate relationship, as I experience discomfort sometimes during intimacy. When my IBS is playing up, all I want to do is curl up on my bed/sofa, with a heat pad on my stomach. I lose my energy, my motivation, I cannot carry out basic household stuff. It is very frustrating.’
Nancy
Related to the unpredictability of symptoms is the uncertainty surrounding plans that you try to make. Such plans may have to be unmade. When symptoms are really bad, other people might have to take over duties at work and a partner might have to take over things for which you normally take responsibility. This can of course make people feel guilty, even to the extent that they stop making plans and become more reclusive, especially if they already have a fear of having symptoms when out socially (see Chapter 7 on how to overcome this fear of going out to public places). Uncertainty and unpredictability are highly disabling factors. You just want to be like everyone else, but everyone else looks fine!
But of course, we should remember that, out of all the people we meet, a good number of these will have either physical or psychological problems, which they hide well. They may indeed be suffering from IBS, but invisible chronic illness means we won’t know. If you suffer from IBS you are not alone, even when you feel you are.
‘I’ve had IBS for six years now (I’m 24) and it’s such a lonely, debilitating illness. The biggest problem I have is not being able to get the symptoms under control (no tabs or diet have given me much relief) and my social life is basically non-existent as I’m always in discomfort and too depressed about finding places to eat out. I feel I just can’t enjoy life when symptoms are out of control! My family and friends try to understand but they just don’t know how bad it can be!’
Lucy
‘I don’t tell anyone about my symptoms; they wouldn’t understand, and I would feel embarrassed.’
Mary
It is easy to understand why people with IBS (and other conditions) hide their symptoms. Most people like to blend in; they don’t want to feel different. They don’t want to draw attention to their disease, feeling that people might judge them as being lazy or a hypochondriac. Also, having to explain what IBS is like, perhaps multiple times, is very frustrating and it’s worse if you feel you have to justify IBS when people have no understanding of it. People who don’t know much about the condition might voice their opinion that it is simply the result of stress, or the wrong diet, or easily cured by eating particular foods, or that you just aren’t coping very well. They might say all sorts of inappropriate things. Hiding symptoms often seems a lot easier. But hiding symptoms has its downsides too. The more people know about IBS and its effects on lives, the more information they have, the better for everyone with the condition. A lot of patients have felt better about themselves once they had come out about it. Only they can judge what’s best for them.
Many research studies show that people with IBS, and other diseases focused around the gastrointestinal (GI) system, feel ashamed and embarrassed about their illness. Noises from the gut, possible smells, needing to go urgently to the toilet, are all things that people find embarrassing. Once you become an ill person, or a patient, the view you have of yourself changes. You may no longer trust your body and feel that it lets you down at inopportune moments.
You may feel different and blame yourself for what you did or did not do – even though you are not to blame for your illness any more than those who have cancer or a stroke are to blame for theirs. All sorts of factors right from childhood predispose people to certain illnesses; you are unlucky if you are one of those people. Any shame or embarrassment needs addressing, so that the person with IBS does not go on feeling these emotions. We give more information on how to deal with these feelings in Chapter 7 (page 107).
This is the negative emotion people feel when they have something about them that they perceive to be shameful or unacceptable. Some illnesses are more ‘acceptable’ than others. For instance, AIDS and mental illnesses are stigmatised more than cancer. Conditions where people have embarrassing symptoms also have stigma attached to them. In 2002 our team published an article about perceived stigma and quality of life in men and women with IBS14. We found that perceived stigma was associated with a reduced quality of life. This was also the case with inflammatory bowel disease at that time. Although we now know more about IBS than before, it seems that IBS and IBD still are associated with feelings of shame and stigma. In 2011, Tiffany Taft and colleagues carried out a study looking at over 400 people with IBS or IBD15. Their study was interesting, as they identified the sources of perceived stigma – that is, whether the stigma was felt to arise from friends, family, healthcare providers, spouses, co-workers or employers. Overall, those with IBS felt more stigmatised than those with IBD. They felt most stigmatised by friends, followed by healthcare providers, co-workers and employers, and least stigmatised by family and spouses. The study found that perceived stigma was associated with increased depression and anxiety.
‘It does have a huge impact on my life as it is so unpredictable and I can go for ages feeling fine but it all of a sudden flares up again. I’m not a huge drinker but if my friends want to go out and I drink then I usually end the night with an awful stomach ache. I do tend to hide my symptoms, especially when they’re embarrassing ones, such as gas, bloating and diarrhoea, which can happen all of a sudden. If I am at work and I get symptoms, I always try and find a toilet that is hidden or nowhere near any other people! It is really embarrassing, especially if people ask.’
Gemma
Cecilia Håkanson and colleagues from Sweden have carried out studies on the various experiences that people with IBS have in relation to their disease. Their studies show clearly the ways they feel about their disease, and the ways in which it affects their lives and relationships.
One study by this Swedish group looked at the experiences patients with IBS had of dealings with healthcare professionals16. Some had supportive encounters, but unfortunately more had unsupportive ones. In the unsupportive encounters, people were not taken seriously, healthcare professionals dismissed them or told them to ‘calm down’. Sometimes they were told they were exaggerating or imagining their illness. Not being taken seriously is a recurring theme in the experiences of people with IBS. This is no doubt because the condition is invisible. In fact, the researchers said that they felt that looking ill would have been better, as then others would have taken them seriously. Their research found that they felt insignificant in their encounters with healthcare professionals, that they weren’t believed, and that their feelings were not understood.
Supportive encounters included being acknowledged as a person – that is, the healthcare professional listened to the patient without judgement and developed a relationship based on respect and trust. The key to the development of trust was not to do with a doctor having extensive knowledge about IBS, but rather the practitioner’s genuine interest in the patient’s experience of symptoms and life with IBS. This shows that it is not necessary to see the top (and most probably most expensive!) professional in gastroenterology to have a good doctor–patient relationship and, in turn, appropriate medical care. Rather, the healthcare professional should be open and accepting of IBS and its effects on patients’ lives. Hence, in this study supportive encounters with doctors led patients to feel that their feelings were legitimised.
Medical legitimisation is a very important theme for us. The term refers to healthcare professionals and others believing you have a real illness which is important enough to consider seriously. Illnesses differ in the extent to which they have this legitimisation, and the invisible illnesses tend to be the ones which have low medical legitimisation, because if people can’t see your illness, then they may doubt you are actually ill. Cancer probably has the highest medical legitimisation. Research shows that people who have an illness which isn’t legitimised become more depressed and anxious than people whose illness is legitimised, even if they have similar symptoms.
‘Until fairly recently, I was typically told it was a bout of diarrhoea that would pass, or that I had a bug of some sort. I didn’t really connect all the dots myself, so I can’t really blame medical professionals for being so slow on the uptake.’
Justin
Medical legitimisation is one thing, but to have friends and family who validate and legitimise your illness is also important – maybe even more important. People with invisible illnesses are often more disappointed when their family and friends seem to doubt them, as when healthcare professionals doubt them. As attitudes towards IBS have become more positive, hopefully friends and family will be less likely to have negative attitudes.
People with IBS are often worried about disclosing their problems to potential partners. They might fear rejection or be embarrassed to start talking about IBS – or perhaps not know how to broach the subject. There are many embarrassing illnesses, and, sadly, when bowel problems and toilets are involved, people are inevitably embarrassed. Really the best way of coping with this is to be honest about it from the beginning. Tell the potential partner how it affects you, but let him/her know that IBS is only one part of your life. Needless to say, if potential partners don’t want to pursue a relationship just because you have IBS, then you’ve probably had a lucky escape. IBS is a medical disease just like other diseases and affects quality of life, even if it doesn’t affect longevity.
‘Finally I got the courage to tell my girlfriend I had IBS. She did know there was something wrong, but I told her that I was being investigated for colitis, which I thought sounded better. I was really worried about telling her, but she just said she knew a few people with IBS and so what? So then we were able to talk all about IBS and it was a real relief to know she understood. I wish I had told her earlier.’
Edward
Having a condition like IBS can wreak havoc with intimate relationships. Apart from feeling unattractive due to bloating, burbulence, wind and all the other symptoms that come with the condition, the fear of needing to use the loo during sexual encounters can kill a sex life. Constipation can also make sex painful for some women. Apart from using the treatment and self-help strategies to reduce symptoms that are described later in this book, communication about your fears can help you and your partner maintain intimacy and a sexual relationship. If your partner isn’t supportive and understanding, it may be worth seeing a counsellor to help open the channels of communication. There is very little research about IBS and sexual relationships (and how to maintain them), but author and ‘sexuality expert’ Cory Silverberg has written a number of straightforward and practical articles, including issues surrounding bowel control during sex:
Reading these articles with or without your partner may help not just with sex per se, but all-round intimacy as some of Cory’s ideas involve challenging our views of ‘sexiness’ and what sex really is – that is, not what is portrayed in the media but rather a quite messy and ‘unsexy’ thing altogether!
Social support has been found to have positive effects on the lives of people with IBS. You know how good it feels when people around you acknowledge your difficulties, when they accept you as you are and you know you can tell them anything and they will still support you. Social support from others is really important.
One recent study by Lackner and colleagues in the USA found that IBS patients who had high social support had less severe pain than those who had low social support17. In fact, people who had better support from others had less severe symptoms in general.
This is most likely due to a positive effect on the BGA/HPA system (page 13), as studies suggest that good social relationships can reduce the stress responses from this system. Social support can act as a protective factor against getting diseases (see Chapters 1 and 9 for more on the BGA/HPA system). Why does social support have these beneficial effects? Well, it is partly hormonal. Oxytocin is a hormone which is secreted by the pituitary gland in the brain. It is involved in the regulation of childbirth and breast-feeding, strengthening the bond between mother and child. However, it has wider effects than this. Oxytocin is released when you feel supported by others. Studies have shown that oxytocin and social support interact together in reducing cortisol (a stress hormone), which means that stress is reduced. Heinrichs and colleagues at the University of Trier in Germany carried out a study in which men with and without social support were either injected with oxytocin or a placebo18. All were first subjected to a stressful task – in this case, public speaking and solving mental arithmetic problems in front of an audience. The researchers then measured the levels of cortisol in the men and collected information on how anxious or calm they felt via questionnaires. The researchers found that men with no social support had high levels of cortisol and also had a decrease in calmness and increase in anxiety levels. Those who had social support or oxytocin (or both) were calmer after the stressful experience and had less anxiety.
Employers now have to make reasonable adjustments for people with medical conditions. So, for instance, a person with a bad back might need a special chair; someone with ME/CFS might need to have more rest breaks. If your IBS is worse in the morning, your employer might agree for you to start work later. You are the best person to determine your needs, so you need to tell your employer that you have IBS and how it affects you, so that managers can make any adjustments to your working practices. This might mean having an office near the toilets, or needing flexibility in terms of sick leave, working hours or work breaks.
Employers are not allowed to discriminate against you because of any medical conditions, and many employers are extremely helpful and supportive of people with long-term medical conditions. Obviously you can ask your employer to keep your medical problems confidential.
Under the Equality Act 2010 a person is classified as disabled if they have a physical or mental impairment which has a substantial and long-term effect on their ability to carry out normal day-to-day activities.
If the IBS is severe and restricts a person so much that he/she can’t work, then it could be considered a disability. If it has a substantial and long-term negative effect, such that a person can’t work, it might be possible to apply for a benefit called the Personal Independence Payment (PIP). It will involve an assessment where certain conditions have to be met:
For further information, see https://www.gov.uk/pip/eligibility.
‘My doctor told me that stress is a big factor for anyone with IBS but I really don’t remember having any stressful times … I was a stay-at-home mum (thank god). To be honest, the thought of going out away from my home (and toilet) was causing the MOST stress … people who don’t suffer from IBS don’t understand that … it’s not stress, it’s FEAR.’
Danielle
Some people might be told, or feel, that they are depressed. People with IBS, and others who have invisible chronic diseases, do show a higher rate of depression than people who are healthy. This seems likely to be true, since living with a chronic illness, which is often misunderstood and which seems to have no particular cause or cure, is depressing. It’s very hard to be constantly happy and optimistic when you are ill. People with a cold or flu are likely to feel dreadful too, even though they know the virus will be gone in a short time. It’s much worse if you don’t know how long your symptoms will last.
If you or someone you know feels depressed rather than simply low, it is best to deal with the depression by going to the GP and perhaps accepting antidepressants. Some antidepressants calm the bowel and can help you sleep. Do discuss this with your doctor, however, as certain antidepressants can also irritate your stomach.
‘Living with the symptoms every single day leads to stress and fatigue. I don’t sleep well now, and I worry a lot, which makes the pain worse I think. I used to just take medications but now I’ve bought some CDs for relaxation and those have helped me.’
Nicola
The problems that people with IBS have are similar to those of people with other invisible conditions. IBS, ME/CFS, Meniere’s disease, fibromyalgia etc all have some symptoms in common. The main ones are fatigue and sleep problems. Fatigue is a key symptom of ME/CFS, but is a factor in most illnesses.
Fatigue can be a result of the following:
These factors, and having such intrusive physical symptoms, means you might not be getting enough good quality sleep. This might be because the symptoms themselves wake you up, or that you wake up and begin to worry, perhaps because you fear you might lose your job, or that you won’t be able to cope, or that you might have a different disease to that of IBS. Sleep is really important for healthy people, and for people with chronic illness, it is especially important.
The actual length of time you sleep predicts how healthy you are – and lack of sleep (less than five hours) has been shown to lead to health problems such as obesity, stroke, diabetes, anxiety and depression. Job stress has been shown to affect quality of sleep; in a study of nurses, for example, the higher the level of job strain, the less they slept.
In terms of IBS, studies show that people report decreased sleep duration and quality and that they feel fatigued during the day. IBS symptoms are worse when sleep quality or quantity are worse. One study in particular found that after a bad night’s sleep symptoms of IBS were worse the next morning19. People who have high levels of social support have a better quality of sleep than those with less support. Conversely, people who find that their friends are not supportive and that these friends only created stress for them, were more likely to suffer from disturbed sleep.
‘I have problems sleeping. It used to be just staying asleep was an issue as I had no problems falling asleep, but now I have problems getting to sleep as well … I did finally get a prescription for sleeping pills from my doctor but they only let me get maybe four straight hours. I have not had a good night’s sleep (without meds) in probably 10 years or more.’
Danielle
Lack of sleep affects the immune system and can activate an inflammatory response. Not getting enough sleep can also mean that your immune system is less able to mount a response to a viral infection, so if you sleep badly you might be more prone to coughs and colds.
People who have never experienced true fatigue might be sympathetic but they cannot really put themselves in your position. Fatigue can affect both work life and home life. Work life is, of necessity, the first thing to protect, so a person may go flat out to make sure no one realises how bad they feel. When something has to give, it’s home life, hobbies, and social outings. Relationships with partners and family can often be strained, especially if a partner has to take on additional responsibilities when you are too ill to do them.
The stress and worry of coping with a chronic illness has biological and physiological effects, not just psychological (see Chapter 1). We give advice on how to deal with anxiety and stress in Chapter 7. We also give tips on how to get a better night’s sleep in Chapter 4.
In this chapter we’ve discussed IBS as a condition that has a substantial and long-term effect on both personal and working life. We have suggested that people should tell their employers so that they can give support in work and that if a person wants to work but cannot as IBS symptoms are too bad, then it is possible to apply for state benefits (if you are in the UK). We have discussed the ways in which IBS can affect different aspects of a person’s life, including relationships with healthcare professionals, friends and family. As IBS is an invisible illness it can be hard for people to understand how terrible someone with the condition feels, the embarrassment associated with gastrointestinal symptoms and the fear that goes with possibly having an accident in public. In the next chapter we are going to look at some of the tests and procedures that a doctor might request in order to diagnose IBS and also things that can be done to help a doctor reach an accurate diagnosis.