What Not to Say

This week one of our patients, Kate, and a group of her peers worked together to produce the do’s and don’t of what to say and do, written specially for our blog.

I attend the Hospice Day Service one day a week, and one day myself and other patients were discussing around the craft table things we found irritating, upsetting and some almost amusing (in a macabre way), that people say or do when they know you are terminally ill.

Please find below a list we as a group created of things NOT to say:

1.     Don’t spout things like

‘You’re on a journey’,

‘You must fight’,

‘Don’t give up’ and ‘you’re so brave’.

We are only brave because there is no other choice.

2.     Just because I may have difficulty communicating does not mean I am daft!

3.     Saying ‘You look well, you would never know there was anything wrong!’  Especially when you feel horrible.

4.     Telling us ‘you must remain positive.  Anyone I have ever met with a life limiting illness has always been really positive!’  Everyone deals with his or her illness differently.

5.     Please do not tell us the story about your uncle’s neighbour’s cousin, who had the same disease we do and had a horribly painful and tragic death.  This does not make us feel any better!

6.     Friends, please tell us exactly when you want to meet up.  We know it can be difficult to cope with seeing us ill, but sometimes we can’t make simple decisions such as when to meet, so don’t say to us ‘We’ll sort out a time to meet later’.

7.     When having difficulty communicating please don’t speak over us or say ‘I can’t understand what you are saying’ and walk away without trying.

8.     The worst thing you could ever say to us or another terminally ill patient is ‘Anyone of us could be hit by a bus tomorrow!’
We may feel that today it could be you under the bus!

Thank you for reading this and we hope it makes it easier for you to talk to anyone you know who may have a life limiting illness.

Kate