This chapter is for the family, friends, colleagues and other members of your support group. For simplicity’s sake here we will just call them your ‘friend’. Sometimes it can be difficult to ask for the help we need so you may want to give this chapter to a friend or family member as a basis for starting a conversation about your IBS. But you may not want to talk about your condition directly, so you could give the person concerned this chapter and just say it’s for him/her to think about. Either way, the ideas below are aimed directly at others who can help you when your symptoms are at their worst and also help you get the best out of life.
It is not always easy to understand what a person is going through when they have an illness. People understand what it’s like to have a cold, a headache or flu, but unless they have experienced IBS – or cancer, for that matter, or any other illness – then it is hard to really understand what’s going on. If you are in the position of having to live with or care for someone with an illness, then the illness will affect you as well. Research has shown that families of people with illness share a significant weight or burden. They may have to take over some of the responsibilities of the person who is ill. There has been a lot of research showing how the life-threatening illness of a loved one who, say, has cancer, negatively affects families or care-givers. Studies have shown that partners of patients with IBS also carry a significant burden, compared with people who have healthy partners. The more severe the IBS, the greater the burden is on the partner. So ensure that you treat yourself gently as well.
There are many conditions where people look fine, even very well, but they are in fact in a great deal of discomfort and pain. Other ‘invisible illnesses’ include IBD, fibromyalgia, migraine, ME/CFS, balance disorders such as Meniere’s disease, rheumatoid arthritis, epilepsy … the list goes on and on. It can be hard to have symptoms yet look fine from the outside.
Everyone has experienced some sort of pain or discomfort at some time. Try to remember when you last had a headache or other bodily pain. You probably looked perfectly alright to everyone else but you may have been feeling unwell on the inside. Now imagine feeling like this constantly.
People with IBS are subjected to a double whammy. Not only do they feel rotten, but there is often a lack of support from those close to them, such as family members and friends. Work and recreational situations can also be challenging as without outward signs of ill-health, someone with a condition like IBS can feel very isolated indeed. People with the condition often find it very hard to acknowledge their IBS and in turn to discuss it with others due to the embarrassing nature of the symptoms.
In addition to this, IBS can also attract stigma as it is a complex condition that does not have a single cause or test that can pinpoint a disease process – that is, there are no scans, investigations or blood tests which can show that a person has IBS. This does not mean that IBS is not ‘real’; rather that it’s a multifaceted condition and we are only just learning about the physiological processes underlying it. For example, factors such as the use of antibiotics, gastrointestinal infections and life experiences appear to interact with a person’s genes to produce the symptom of IBS.
So, someone with IBS may appear perfectly fine – in fact, almost anyone will say ‘good’ or ‘well’ if you ask them how they are. This does not mean that IBS is not a debilitating and intrusive illness. All it means is that your friend, brother or workmate who has IBS is trying to put his or her best face on.
Simply acknowledge your friend’s experiences as real and distressing. You don’t need to know everything about IBS or understand all the complex theories behind it; just by accepting what your friend says about how he or she is feeling is a great help and support.
Your friend may have to consult various different doctors and have a number of tests before a diagnosis of IBS is obtained. Conversely, a GP may have diagnosed IBS very quickly but your friend may still feel that something else is the cause of his/her symptoms. You may feel like this journey is anything but straightforward and you would be correct. IBS does not have an easy test to confirm diagnosis so even if someone has this diagnosis, it could turn out later that they really have a different disease. Both the struggle for an initial diagnosis and the feeling of frustration engendered by being misdiagnosed can be difficult for the person with IBS symptoms, and this is on top of feeling unwell, of course.
As IBS is a complex illness and the road to diagnosis and treatment can be rather bumpy, it is good for those with this condition to develop a collaborative relationship with doctors and healthcare professionals. This can be a tricky relationship to build as people with invisible illnesses often feel ignored and not taken seriously by medical professionals.
Help your friend with his symptom diary if he wants you to. (He may not and this should be respected.) Those close to us can often see other signs and symptoms, such as fatigue or bad temper, which the person with IBS may not note explicitly. Including this information in a symptom log can help doctors to get an accurate picture of the illness as a whole and aid diagnosis and treatment. Also, if your friend is getting very frustrated with his/her GP, support him by listening to his concerns non-judgementally and giving reassurance that relief will be found even if it takes time and changes in lifestyle.
At first glance, you may not think that IBS is the type of illness that would lead to isolation. For instance, you may wonder why your colleague can’t get out and about like she used to do (or, can’t travel far/go out to a meal etc). However, some of the symptoms of IBS can come about incredibly suddenly. Just imagine that you’re on a packed commuter train. This train may or may not have a toilet. The toilet may or may not be in working order. Even in a best-case scenario, it may be impossible to access the toilet due to the crowds. If you can access the services, you may feel extremely embarrassed about some of the unpleasant consequences of IBS symptoms, such as noise and smell. But the fear that you might not be able to get to the toilet, the toilet isn’t working or there isn’t a toilet on the train, could be enough to stop you from making the trip at all. You can probably imagine other, less severe situations that could feel frightening for a person who experiences a sudden onset of IBS symptoms.
Even in a less desperate situation, it may be uncomfortable for someone with IBS to engage in social activity. A huge proportion of our social interactions take place with an accompaniment of food and drink. Think about it for a moment – how many times do you meet with friends and work colleagues socially without eating or drinking something? In most cultures, there won’t be many get-togethers that don’t involve some type of food consumption. Eating (and to a lesser extent drinking) in public may have also become a terrifying prospect for a person with IBS if he is symptomatic. This can then lead to isolation as your workmate may continually turn down offers for dinner and after-work drinks.
Try to think of things to do that are still of interest to you and your friend, which don’t necessarily involve lengthy commutes or meals out. For instance, if your friend used to enjoy going to a football match but now he seems reluctant, it may be that he’s worried about being able to access a toilet easily. Instead, suggest that you both watch a game in his house or at a local pub. This way the worry about being near a toilet will be reduced and your friend can benefit from some very important social interaction (unless of course your team loses). If you used to go out for dinner all the time but now don’t, see if he instead would like to pop round to watch a film. Of course both of these activities might involve food also, so you may want to broach the subject and ask if there’s anything your friend would like or say it’s fine for him to bring his own snacks.
Sometimes we as friends and family members can become overly protective and watchful of our loved ones when they are unwell. This can be counter-productive as continually asking someone if he is okay may lead to anxiety in that person. Stress and anxiety can actually worsen and/or trigger symptoms (see below). So, whilst we should be aware of the limitations that IBS may impose on some of the areas of a person’s life, it’s also helpful for your relationship with your friend, partner or workmate to keep in mind that he is the expert in his own health and illness.
Similarly, we want to help our friends recover so it can be very tempting to offer advice. This again can make someone with IBS, or any long-term condition, anxious as an underlying tone of ‘you’re not trying hard enough to get better’ may be perceived, even if it is not intended. You may feel excited to have read in a magazine that a new diet plan has led to the complete cure of a person with IBS and you want to share this news. Please take a moment and consider that your friend is working with his doctors to find the best treatment plan for his individual set of symptoms. Not everyone with IBS is the same and so a therapy that has worked for one person may not work for the next.
Although it is important to make some changes to accommodate times when your friend may have IBS symptoms, it’s also very important not to infantilise or treat him as if he is fragile. So treat your friend as you would normally, but with an awareness that alterations in activities and schedules may need to be made. Your friend probably thinks about IBS far too much already so although you shouldn’t shy away from a conversation if he wants to talk about the illness, it needn’t be the focus of all conversation.
With regard to activities and social arrangements, another aspect of IBS that can make life a bit miserable is its unpredictable nature and symptom flare-ups. Even when someone has found a good way forward in terms of treatment, symptoms can occur without any apparent trigger. This means that some plans will be cancelled at the last minute. This can create a huge sense of guilt in the person with IBS. He may have been a very reliable person before developing IBS and now seems to cancel meeting up on a regular basis. Your friend is still the reliable person he always was; it is just that these symptom flare-ups are beyond his control. It’s important not to take cancellations personally or feel offended by them. In fact, if your friend knows that you will totally understand if he has to cancel, the chances are that it won’t happen. Yet again, this is to do with how stress affects the illness (see below).
Also, by being flexible with your friend this will allow him to avoid a lack of planning and/or over-scheduling, both of which can worsen IBS. Having a regular routine, with nice social time built in, is essential in managing the symptoms of IBS. People with unpredictable illnesses can often avoid making plans when they feel unwell and then to compensate they will arrange many outings when they feel a bit better to try to catch up. But of course this over-scheduling can then instigate a return of symptoms, resulting in cancellations that then need to be rebooked. This ‘boom-and-bust’ pattern is detrimental for people with chronic illness.
Make your friend aware that it is no problem at all if he needs to cancel or postpone arrangements, even at very short notice. Flexibility and understanding on your part can help your friend immensely while he sets a new routine. This will also allow him to feel more in control of his life in the face of a seemingly uncontrollable illness.
Stress and anxiety will make any illness worse. Indeed, even a healthy person can feel very unwell physically when experiencing a great deal of stress – for example, he may feel his heart pounding, start sweating or even feel nauseous. These sensations during acute stress are normally short-lived and don’t cause anyone health problems. But when someone is unwell already or if stress is chronic, the physiological changes that occur in our bodies during stressful times can make an illness worse. This is because stress can adversely impact on our body’s immune system.
Have you ever noticed that you seem to come down with a cold, not during a very stressful time, but just when you have a moment to relax? For instance, have you ever seemed to pick up bugs on holiday or around Christmas time just when all the stress of getting work completed so you can actually have time off has subsided? This is because your body has been helping you deal with the pressures but in doing so your immune system may not be at its best to fight off infections. However, you wouldn’t then think your cold or cough was due to stress in itself would you? You would still understand that you’ve contracted a virus or other type of infection.
Therefore, stress such as problems at work, relationship difficulties or more general pressures, such as feeling the need to conform to certain ‘norms’ (e.g. ‘I must earn a lot of money to have worth’) can have an impact on people with and without chronic conditions like IBS.
It can be hard for people to ask for support so give some thought to the stresses that your friend may have. Of course, simply experiencing IBS is stressful in itself but there are many ways that you may be able to help to reduce stress. These can be emotional, like acknowledging and accepting his illness experience as mentioned above. But support can also be more practical. Perhaps your friend has been finding his symptoms to be particularly bad first thing in the morning. Therefore, you may want to offer some help with the school run to take a bit of the pressure off him/her at the time when he is most symptomatic. Even if you can’t do this every day, a small period of respite can often make a difference to a person with a chronic illness.
So far in this chapter, specifically for the family, friends, close acquaintances and work colleagues of those with IBS, we’ve highlighted that this condition is complex and the symptoms of IBS can lead to a person becoming quite isolated. Considering the misconceptions others may hold about IBS, the embarrassment and stigma that still surrounds toilet issues and the restrictions in activity that IBS symptoms can cause, it is easy to see how a person with IBS could start to feel down. Understanding that having an illness like IBS can make someone feel depressed is important for the way that you interact with them.
Also it’s not just the limitations on daily life that can lead an individual with IBS to become depressed; immune activation can lead to feelings of low mood. People with IBS have often experienced infections or trauma which may instigate an immune response. When our immune system is set into action by an infection or injury, there are many consequences. We won’t go into all of the physiology and biochemistry here, but small proteins called cytokines are released as an innate immune defence mechanism to protect our bodily systems when a threat is detected. However, the release of cytokines can have some unfortunate consequences such as fever, fatigue, loss of libido and also depression. Try and think about when you last had flu or a bad cold. Did you feel rather low? It may not have been the constantly runny nose and fever that were making your feel this way but rather your body’s inflammatory response.
If your friend seems to be having a bad case of the blues, telling him/her to look on the bright side may not be the most useful way to approach the situation. Under these circumstances, the most important quality for you to possess as a friend is patience. It can be exceptionally difficult for us to see our friends feeling so low and we may tire of hearing about someone’s health problems. However, please know that your friend is actively trying to help him/herself by researching his condition and attempting to find a treatment package that will help. Being prepared to hear the answer ‘rubbish’ to the common question of ‘How are you?’ may seem a trivial thing, but actually, staying the course with your friend when he is at his lowest without judgement is invaluable.
Difficulty in maintaining a fulfilling sex life is a commonly reported consequence of IBS, noted in surveys and research by both men and women. Sex drive, or ‘libido’, can be affected, sex can become painful and also the embarrassing characteristics of IBS can turn a once active and satisfying sexual relationship into a frustrating and problematic area. These difficulties can result in a complete absence of sex in a partnership and this can impact on other areas of the relationship. So even though this can be a tricky subject to broach, it is necessary for both your and your partner’s overall well-being.
The key here is open and honest communication. Of course this is easier said than done, so if you feel you and your partner need additional support on this issue, don’t be embarrassed to ask your GP or healthcare provider for guidance. You might be referred to a specialist counsellor who can guide the way to frank and non-judgemental communication. The counsellor may also be able to suggest other ways to create intimacy even when symptoms are present.
Although it may be difficult, try your best not to place blame onto your partner for a reduction in sexual activity. Having IBS is not his fault and you can both work back towards a good-quality sex life together. There are many ways to foster intimacy; for instance kisses and cuddles can act as a bond just as sexual acts can. Someone with IBS may not feel at all attractive, so reassure your partner that the IBS hasn’t taken any desirability away from them. Most importantly, be honest and willing to find ways to share a sex life even if this means asking your GP for a referral to a specialist counsellor.
To recap, IBS is an unpredictable illness and can significantly disrupt a person’s life. There are many factors involved in the development of IBS and stress is one such factor that you, as a friend, partner or close work colleague, can help to reduce. Also, by understanding the unpredictable nature of IBS, you’ll be in a better position to support your friend and see that the changes in his behaviour are due to the illness, not the person. Therefore, in summary, the tips to helping are:
Overall, simply being there and accepting that the person with IBS is trying their best to overcome this debilitating and still misunderstood condition will be an invaluable support. IBS is an embarrassing and stigmatised illness that can challenge someone’s very sense of self and belief in their body. Support, whether emotional or practical, can limit the likelihood of depression and isolation, factors which we know are detrimental to us all.