When I'm introducing myself to people who need to know, I usually say "Hi. I'm Pete - I'm living with dementia". It's usually the opening remark of any public address I make, and sets the agenda so that the audience knows where I am speaking from. Apparently, I've been doing it wrong... I was informed during an online meeting last week that I'm not supposed to say that anymore, because it's not just people with dementia, but their carers, friends and family too who are "living with dementia" (there was even a Venn diagram). Now the thing is, I try very hard to be politically correct. I don't tell people that I "suffer" from dementia (although I do sometimes - ask Pam. on a bad day it's awful). And I want people to know that dementia need not be scary, taboo or make one an instant candidate for pity. On the contrary, there is still life and love left in us old dogs - and by stating that I'm "living" with dementia, I'm trying to convey that there IS life after diagnosis. What I've NEVER tried to do is to is to imply that it is exclusively me who lives with dementia and not my carer, friends and family. But now I feel like I have a dilemma. Should I change the way I think about myself in case I am appropriating a phrase that belongs not just to me, but to anyone close to me? Or do I carry on regardless and perhaps make some people think I'm being selfish?
Or maybe there's another way to introduce myself? I could do with some advice. Please leave a comment and steer me in the right direction.