It is not just the symptoms of being ill: the pain, nausea, bowel upset, bloating, breathlessness, that are so distressing. It is also what they mean.
This includes the fear of what it might be. Could the doctor be missing something? Could we have an incurable illness? Will it go on forever? Will we always be on medication? What if we are out in town and have an attack? Illness rekindles fundamental insecurities of being out of control, which we may find very difficult to communicate.
Then there is also the frustration of being trapped by the illness; not being able to do the things you want to do – like go for a walk, enjoy a night out, perhaps have a drink or a meal, having to make excuses to miss that special occasion and, of course, never being able to enjoy those intimate occasions without the fear of it all being spoilt by your illness. By far and away the most visited post on this blog is the one on ‘Sex and the IBS’. Over 50% of the search terms are on the same topic. This tells me how much this bothers so many of you. As somebody once asked me, ‘without sex, is there any point in life?’. You may think that, but I couldn’t possibly comment.
It can be so difficult to explain to other people what illness feels like. There is never enough time. It is uninteresting, embarrassing, and it reveals aspects of us that we would rather keep hidden. Doctors and dietitians only want a version that is filtered by their own preconceptions. Even counsellors or therapists may not get it, so how can we expect our spouse or family to understand. Sympathy is restricted and time limited; you need to elicit it sparingly.
Getting ill is a journey into an unfamiliar state of being, a state of unknowing where a person can feel very alone and where hope alternates with despair. Waiting for tests can cause enormous anxiety as one fears the worst. What will happen if I die? How will the family cope?
People often say that illness makes them feel a failure; one of life’s inadequates; a passenger in life; defective and needy. They are shamed by their illness. It is not just the symptoms that make them feel bad, it is the humiliation and limitation of living day in and day out with an illness that never seems to get better. This is so much worse if there is no obvious cause. Without evidence such as bleeding, a lump, a rash, abnormal test results, others may come to doubt that the illness is real; they may even suspect it is all an excuse to avoid certain obligations or challenges. ‘Oh, I can’t possibly do that; I am not well.’ There may be a purpose and a secondary gain in illness, though in my experience people are rarely putting this on consciously.
Dependency is a big issue. We all like to feel in control of our lives. Although it may be comforting to be looked after for a short while, it can feel so humiliating to be dependant on another person, to have to ask for help, to feel a burden on them, to hold them up or put them out. We can all recognise that look of tired irritation in the other’s eyes, when we have to bother them yet again. Perhaps it was the same look your mother used to give you.
People react to illness in different ways. Some are stoical, others desperate. Some can allow themselves to rest and let others look after them. Others try to power through by themselves. Some will accommodate to disability better then others. Our reaction to illness depends on how we were brought up, whether we experienced distress or trauma during childhood and how we reacted to previous setbacks. If your mother was nervous and insecure around illness when you were younger, then being ill yourself will raise all the same insecurities. If, on the other hand, your mother found it difficult to tolerate your illness and tended to ignore it, then you may try to deny the illness as you try to stay in control. Illness always puts us in a vulnerable position. It can feel like a return to the insecurities of infancy.
If illness that goes on for so long, it can be like you become the illness. When you have a pain, all you can think about is the pain. When your bowels are upset, all you can think of is how you can get to the toilet. And friends and family no longer think of you as a separate person with a varied life full of the usual joys and setbacks. Instead, they see a sick person and treat you accordingly. Illness defines the person you are. It can take over, destabilising the way you think, leaving you feeling paranoid and scared, split between hope and despair, needing care but resenting it.
Oh dear! This all sounds very depressing. I should try to finish on a hopeful note. In spite of everything I have written above, there is always hope. IBS is a relapsing and remitting illness. There will be times when the illness recedes into the background as you feel pleasure in connecting with family, seeing friends or losing yourself in a hobby, music or a good book. Be your own therapist. Try to learn from those times, try to optimise your life. Also take note of what seems to bring on the symptoms, try to understand why. There is always a reason why a chronic illness will flare up. It may be something you’ve eaten or, more likely, somebody or something has upset you, made you anxious, reminded you of a situation you have tried to forget, made you feel there is no escape. Your doctor may give you medication to damp down the worst symptoms but you can learn to understand the meaning of your illness and adjust your life to avoid or deal with the situations that cause relapses.
Illness is always an interaction between you, the individual, freighted with your life history, and the social environment that you live in. You cannot change what has happened and you may not always be able to change the way you are, but you can make adjustments to your environment to optimise the way you feel.