Sunday, March 20, 2016

Weekly Inspiration: For Friends & Family - What To Say

This TED talk popped up in my sidebar on Youtube this week, and it sounded (unlike some of Youtube's other suggestions for me) like something perfect for me. It was. Although the speaker is not chronically ill, she is recovering from the loss of a limb, so she understands a few things about physical disability, mourning, and grief...and the horrible things people say when they don't know what to say.

Adrianne Haslet-Davis was a victim in the Boston Marathon bombing and lost her foot and lower leg. In this talk, What People Say When They Don't Know What To Say, she describes some of the things friends and family said to her while she was in the hospital and working to recover and grieve her loss. No one with chronic illness will be surprised in the least by some of the horrible things people said to her. We've all been there - hearing a well-meaning loved one tell us how lucky we are or suggesting that vitamins could cure us or (my personal favorite) tell us that God never gives us more than we can handle.

Adrianne's experiences are similar (and sometimes, even worse), and here, she provides advice to friends, family, medical professionals, and caregivers on what to say:

This would be a great video to share with friends and family, but I think it is also helpful for patients enduring these kinds of ignorant comments. For one thing, it tells us that it isn't just US - that it is a universal experience for friends and family to not know what to say and to blurt out awkward, inappropriate, and even hurtful things. Adrianne also talks about where these horrible comments come from - she theorizes they come from a place of fear. I agree completely. I think one reason so many people have trouble dealing with those who are chronically ill is the constant reminder (perhaps even unconscious) that this horrible thing could happen to them, too. Yes, they love us and they want to help us, but deep down inside, it is terrifying to see a formerly lively, active loved one become so severely ill (which is also why so many of our loved ones gets mired in denial).

I've written previously about this topic in CFS and Family, The Invisible Wall, Helping Family Understand ME/CFS, and in my ProHealth article, Who Do You Tell and What Do You Say (kind of the opposite of Adrianne's talk here, about what we say to others).

What are your thoughts on the things people say? Share your experiences in the comment section, about what your loved ones have said to you or your own strategies for dealing with these kinds of comments.

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