Saturday, August 22, 2015

Your comments are incredible: Friends and Chronic Illness

I don't usually re-publish old posts; but one in particular is especially interesting to me. Not because I've written anything extraordinary, but because my blog readers have. My post from July 21, 2010 entitled 'Have you lost friends when you acquired a chronic illness?' is one of my most popular even five years after it was written. The very best and most insightful part of this post, however, is found in the comments that follow it. Here's a section of my post but be certain to scroll to the end of the piece to read the reader comments which contain honest emotions stated so eloquently.

I received an interesting question the other day from a reader who asked why some of her friends after learning of her Sjogren's syndrome diagnosis just don't GET IT. She shared that she had an incredibly supportive husband, but:

Most of my friends, though, don't remember that I have a "thing", which is fine except when I can't participate in something because of the way I'm feeling or maybe I can do something for a short time. They don't remember my "thing" and keep asking me to do the particular activity. For some reason I hate saying "I have an autoimmune disease" or "I have Sjogren's syndrome"...... And because my friends don't remember what I've told them before, they make me go over the whole thing again, with a puzzled look on their faces as I explain, etc., as if they don't see the problem. And then there are always those friends who quiz you on your lack of participation in an event, and then when you finally start to answer them, their eyes glaze over.....
Anyway, most of the blogs I read are from people, like you, who talk about the wonderful, supportive friends they have. Maybe I need new friends! :-)

First, I want to apologize if I have given the impression that all of those folks that I have called friends in the past are still part of my life now, because to be honest, many of them aren't. They, like many of the reader's friends, seemed unwilling or unable to comprehend my disease and when I stopped participating in activities that we shared, they slowly just dropped out of my life. When I happen to meet one of them somewhere, they will inevitably ask politely, "How are you?" and fully expect me to simply smile and reply that I'm fine. Which is what I do and then we both move on. 

I have felt your frustration and disappointment, really I have. It hurts when people that say they care about you don't seem to want to take any initiative or make an effort in understanding the enormous changes that your body is going through, doesn't it? ...continue reading here

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