One touchy subject that has been on my mind alot has been the unintended impact of conversations with friends. My wife is a social animal, and so needs to meet with people, or she will get bored. She had a high flying career, and an active social life in the days BC (Before Cancer), as well as loving to travel and see and experience new things.
Following her diagnosis, and subsequent treatments, both surgical and intraveneous, she now has no career, has lost her independence, and can no longer travel and experience new things in the way she once could. Not only can we not pay for trips following the loss of income, and need to adapt things at home for her disability, but she also does not have the energy to do as much.
This alone is enough to drive her mental health down. Having had everything you have spent your life trying to achieve taken away through no fault of your own is devastating. And then to not have the strength to fight against it at times, and the dis-spiriting constant pain and worry is an added concern.
On top of that is the sometimes unintended behaviour of friends and family. This isnt meant in a nasty way, and it is nice to hear what people are getting up to. But when the conversation can pivot from an update in her health that week, to what everyone else is planning to do that year, I find it a little cruel. Again, I stress this is not done on purpose. No one is going out of their way to boast about what they are doing, but I will then have to try and revive her flagging spirits in the middle of the night. She will recount how X is going on holiday to this over seas direction, and how Y is planning to build an extension, and how Z is buying a new car. And she knows full well that these are all things out of our reach, but has to nod along and smile during the conversation.
I sometimes wish we could normalise just straight out changing the subject of a conversation. I guess we are too polite, too British to do so. Maybe I should print out cards to hand out to people when she goes out to meet them, giving a list of topics that are off limits. ‘No holidays, no talk of shopping for new clothes’ and so on.
It is a mild form of discrimination, subconsciously of course. Non-inclusive behaviour, that negates to ensure that everyone in a group can participate. We see this in a work environment, whereby in my office we are encouraged to take into account peoples different circumstances, and make sure meetings are set for times when everyone can attend, being aware of those who work part time, or need to work from home. Making sure we solicit the views of everyone in a meeting, not just those in the room, but also those on the end of a phone line. But do we take this into account in our personal lives?
I have certainly been more aware of misuse of disabled parking spots since my wife has had a badge and required us to use them. Even now though, I feel guilty that she isnt disabled enough, not visibly disabled. But we see so many people parking up in those spaces without a care in the world or a badge to give them permission.
We see restaurants without a quiet area, for those hard of hearing. We see struggles getting access to buildings for those who cant walk easily. We see pavements blocked, and vehicles blocking entrances. Life when disabled is hard enough, without then adding in the mental anguish through inadvertent behaviours from our friends.
So, how to combat these behaviours? A polite word would work better than my card idea above! If I am there I change the conversation in a subtle way, trying not to hurt peoples feelings. And therein lies the rub. I spend time ensuring I do not hurt someone elses feelings, while my wife is being pushed into greater anguish.
This behaviour does have a long lasting impact on our lives. My wife gets upset on what she is missing out on. I get upset and angry that I cant provide that life for her. So our collective family life becomes a little worse off, and a little more frustrated. This is then a viscious circle.
So please, if you have a friend who is suffering a life impacting illness or injury, think about what you say around them. Think about what they might be going through, and tailor your conversation appropriately.
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