I feel that I have to address the issue of isolation again, and some other gripes...LOL. Temporarily isolation may not be a bad thing as it shows that we are really listening to ourselves and honoring our needs.
But I believe that there must be some kind of balance. As human beings, we have a need for human companionship, but sometimes it becomes too painful to be around "normal" people, so we tend to distance ourselves. A couple of months ago Stacy and I got dressed up, put on our makeup and went out with a group of my friends. I noticed them watching her intently, as if they were looking for some sign that she was really sick. I felt compelled to explain her chronic pain all over again. I am embarrassed to say that I almost felt like a fraud because outwardly she looked so great.
Because of situations like this, my circle of friends gets smaller and smaller, and I tend to socialize less and less. It's not just friends; family members do the same thing, and I get sick of explaining chronic pain to them. Some actually doubt its existence since in many cases it can't be medically verified. What really amazes me is the amount of anger that they have over her inability to "just get over it." After all, she has had all the surgeries, and should certainly be better by now. I know that it is our responsibility to educate people, but I have no idea how. My patience is wearing thin, and yesterday I lost my grip, snapped at a family member and said "if she had a big tumor on her face would that be an acceptable illness? Would you be more compassionate?" Not the smartest thing I have ever said... but I think you know where I was coming from.
For most people, an illness goes through several stages that usually culminate in a recovery. The hardest part for "normal" people to understand is that there may never be a recovery from chronic pain.
By the way September 10-17 is National Invisible Chronic Illness awareness Week. And for those you who don't know... 96% of all chronic illnesses are invisible.
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