Living with Dying

Roller coaster feelings

People often experience strong emotions when told that they have a life-threatening illness, or that their life is limited (see also 'Own reaction to hearing that life would be shorter than expected').

During subsequent weeks and months feelings may include denial, disbelief, guilt, anger, sadness, despair, resignation and calm acceptance. Some of the people we talked to described having been through different emotional 'stages'. But there is no clear pattern' several feelings may exist at the same time, some may not arise at all and fluctuations in people's feelings are common.

One man explained that he found denial was inevitable at first “It's not until it gets really, really bad, like it's getting now with me, do I realise it is really, really, happening”.

Many people felt angry, especially if their symptoms had not been taken seriously or if they suspected that they had not been given the most appropriate investigations or treatment.

Usually people expect that they will outlive their parents and will see their own children grow up. It can be very hard for people to accept that this 'natural order' has been broken.

Some thought that feeling 'low' or depressed was inevitable and had taken anti-depressant medication since they were diagnosed. A young woman who had chronic obstructive lung disease thought that depression was part of the 'grieving process'. She also said that it helped to write down bad feelings on paper, screw the paper up and then put it in the bin.

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The pain and debilitation of the disease and the side effects of treatments make some people feel terrible. A man with oesophageal cancer said that chemotherapy had so depressed him that at the time he considered ending his life. A woman who discovered that she would not get a transplant said that she had considered suicide as a way of gaining some control and 'not letting the illness decide when I was going to die'.

Others feel intense frustration and find it hard to accept that their life and horizons have changed. A woman regretted not having travelled and a man with multiple sclerosis expressed anger and frustration at his dependence on his wife. A man with testicular cancer and kidney disease said he felt sad and sometimes guilty that he was ill and now limited in what he could do for friends and family.

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A 32-year-old man with a brain tumour explained that it was hard to remain motivated' “You lose sight of life, you lose sight of why you're doing what you're doing and everything else”.

Several of the people we talked to were adamant that it was best to avoid bitterness and anger at the end of life (see 'Message to others'). A man with a brain tumour explained how he would try to help others in his support group to come to terms with the shock.

A man with mesothelioma (lung cancer caused by exposure to asbestos) accepted that what had happened to him was a hazard of life. He found it easier to cope by accepting the situation and having positive thoughts instead of wasting time on anger.

Sometimes people live much longer than they were expected to - a woman who was once angry about her diagnosis, described herself as thankful, calm and at peace with the world. Others were philosophical about how life would go on without them.

Last reviewed August 2014.

Last updated March 2012.

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