Ouch. I danced for about three hours straight at the Mom Prom last evening (Mom Prom=over 21, all female, children optional). Now I am waiting for a ride to the river to kayak.
Left to my own devices I probably would not have entertained the idea, but I had the invitation. I take what is offered and am glad for it in the moment. Even though I have a twinge in my upper back. How did I get THAT? To reiterate: ouch.
Lin said the page on stupid things people say led to a Facebook group discussion. Apparently the world over people say dumb sh….stuff.
Doesn’t surprise me. Race, creed, nationality? Doesn’t matter. It is my contention the huge majority of people are basically kind. They are uncomfortable when faced with the suffering of others and don’t know how to ‘fix’ it. They therefore make inane comments and sometimes downright stupid suggestions.
What people often don’t realize is that they do not need to fix anything! Very often the best thing they can do is just listen to us vent. I will occasionally define the parameters of the exchange. You know: “I know you cannot do anything about this, but I really need you to listen to me.”
If outright telling them you are not asking for advice doesn’t work, or if the dumb questions or advice just ambush you, Shamelessmag.com’s article about Unhelpful “Helpers” has some suggestions. Now, personally, I found some of their examples a tad blunt (amazing considering I am often the queen of tactless), but the premises behind them are sound.
Let people know you are not their cousin’s wife’s uncle and that everyone with AMD is unique. Remind them you are dealing with a doctor who is knowledgeable and whom you trust. (if that is not the case, start shopping for a good retinologist!) Refer them to the web to research the condition. (That should shut them up!)
You can also acknowledge what you believe are the feelings behind the comments. Acknowledge they are trying to help and that they feel helpless in the face of your condition. Acknowledge you often feel the same way and ask for emotional support.
An oldie but goodie to use might be “I messages”. The formula is pretty simple:
“When you do this specific thing I feel in this particular way and in the future I would like you to do this.”
For example: “When you tell me I am only losing my central vision and will not go ‘blind’, I feel you are trivializing my problems and I do not feel supported. Losing central vision is distressing to me and in future I would like you to listen to me and not say that.”
So, take that! ?
And back to my basic premise: when all is said and done, most people are just trying in their own, clumsy ways to help. And when there are 100 ways to do anything, 99 wrong, 1 right, most people will go through the 99 before they stumble on what they should do. Be patient and help them out. Tell them what you need. Remember this is a learning experience for all of us.