Words…

I thought I had posted this the other day, but it seems the Gremlins have got in and my post somehow disappeared.

It went something like this…

I was having lunch with a group of friends and somehow the subject of death came up. One of the team used the term ‘Passed Away’ for someone having died. I favour using less confronting language, but they thought telling someone that their person had died was the best way and did not leave room for misunderstanding.

On the surface of it, in this instance I can somewhat see her point. However, I argued that we need to put ourselves where the person is who is receiving the message we are trying to deliver. For me, if saying someone has ‘passed away’ feels gentler and more palatable for the person receiving the message, then I see no harm in it. For myself, having lost my son just over 2 years ago due to an undiagnosed heart condition, I find myself not being comfortable with saying, ‘My son has died.’ I very much prefer to use the term that he has ‘passed away’. Saying he has died feels harsh and confronting, even for a professional like me. I know that is what has happened, but I need to use the words that are right for me.

My friend believed that it was better to use the word ‘died’ so there is no risk of misconstruing. I usually choose a much softer approach as the word ‘died’ feels harsh and less palatable than gently giving the message using different words.

Words have power. They can give power and they can take it away. For me, I always try to ensure I ask the people I work with what they are comfortable with. Do I call them Mr or Mrs? Do I call them by their full name or a shortened version, or indeed another name completely that they feel more comfortable with? How do they like to receive information? Written or spoken? How much or how little information do they need? What do they want to know?

It’s like my use of the term Parkies. For some this may sound childish, but for me it is a nickname for something that is now my constant companion. It almost sounds friendly, rather than the formal – clinical – name of Parkinson’s. People may have various nicknames for this condition that is used within the family. They may prefer that others use these names as well, or that they are asked how they like to refer to it.

I endeavour to use words that mirror the words that those I am talking to use. If they are more formal in their speech, I will try to match that. If they are more relaxed in their use of language I will use that. If they use the odd swear word, I’m OK with that too! Many times I have met with people who are struggling with a significant medical event. If I go to see them and they look grumpy, or sad, or any other emotion, I will try my best to acknowledge it. If for example they look angry when I walk in – depending on what type of language we usually use together – I might say, ‘You look pissed off!’ or ‘You look angry!’ or ‘You look upset!’ I often find that in immediately acknowledging these things, it usually diffuses the situation and their mood improves.

When I go to see a health professional myself and am not in the best of moods, I would love for them to do the same for me. To not be afraid to say, ‘Hey Sue, you look a bit sad today, or angry, etc.’ To acknowledge that I might have some not so positive feelings on that day, at that time. It’s a rarity that any health professional I have been to see has actually given me the opportunity to express my real feelings. The usual is ‘how are you today?’ which, as we all know is a throw away remark that we are not actually supposed to answer! I went to a Physio a month or so ago and when I sat down he said, ‘how are you today?’ As a response I promptly said, ‘A bit fragile actually! and burst into tears! Not what he was expecting at all.

For me, I feel that those of us with this condition and those who care for us, must have the opportunity to express themselves and to do that in a way that is comfortable for them. To be as formal or informal in our use of language as we are used to.

Words can give power and words can take it away. Let’s not let our diagnosis take away our words and our ability to choose those words long before it needs to.