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Talking about your illness

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  • 28-07-2016
Talking about your illness

Talking about your illness

Socially and culturally many of us have been brought up to avoid tough conversations about death and disease. That can mean that if you have been diagnosed with a terminal illness, it can be extremely difficult to broach the subject with family and friends. 

Dealing with such a big issue alone can be very upsetting and isolating, so it is important to share with those you love.  Denial, sadness and the fear of distressing those you care for can make it tricky to discuss both your illness and the fact that it cannot be cured.  

But even if a problem shared isn’t a problem halved, it’s certainly true that talking things through with those that you love can help you come to terms with your diagnosis and make the most of the time ahead of you. You may well find that your family have had their own worries and concerns, so that being able to discuss things openly can be a relief and a release for everyone.

You may feel that by keeping things to yourself you are saving those around you from worry and hurt. However, the simple action of not talking can in itself create a separation between you and those you love. Being honest and sharing your stresses and strains may help to bring you closer together, so that you can share your fears but also make the very most of the precious moments you have left together.

Starting the conversation

Initiating the conversation is probably the trickiest thing. There is no wrong or right way, just the way that works best for you. However, it’s probably sensible to select a time and a place where you are unlikely to be interrupted or disturbed. 

Don’t feel you have to deal with every issue in one go, by opening up the dialogue you are breaking down boundaries so that you can both revisit the discussion when you are ready.You might want to talk about any number of things, including your feelings about death, your worries, your fears, your wishes for your future care, your funeral, or things you would like to give to people.

The NHS has produced some useful guidance. It can help to start in a way that encourages them to help you. Sentences like ‘It would really help me if we could talk about my illness and the future’ or ‘I know it’s difficult but could we talk about what will happen when I become more unwell’ can open the conversation. Alternatively, you could try asking a question to help them open up, something like ‘how do you feel about my situation?’

Listen carefully to their reply and if you find that they are trying to change the subject and avoid the issue, acknowledge that fact. Saying that it’s OK if they don’t want to talk now but that you’d really appreciate talking at another time to what they say, will help them recognise that this is a subject that can’t be brushed under the carpet or ignored.

When you are talking, remember that it’s normal to get emotional or to cry. You are discussing the death of someone they love very much. Don’t be worried or put off by their expression of sadness, it is a way of them letting go of their feelings and may help them talk more openly with you.

What should I say?

The conversation is really up to you. You may want to deal with practical matters such as advanced care planning, financial arrangements and wills. Alternatively, you may wish to say sorry for past problems, express your thanks or just tell them you love them. 

If the idea of talking seems overwhelming, then consider putting your thoughts into a letter, a recording or into a memory box so be shared and treasured after your death.

Dying Matters

Dr Kate Granger’s blogabout living with a terminal diagnosis

Find out more about the range of palliative care services that we offer throughout London.