As I wrote the last post, listing my surgical history, I started thinking about my family's attitude and behavior, as well as what other people have often said in various pain support groups.
How can someone not believe you when you have had 12 brain surgeries? How can a sister see you bald (they took all my hair for the first operation) disfigured, or have trouble walking and say, 'There is nothing wrong with you, you're making it up."?
How can someone look at someone they know/love and see the black and blue and swelling of, say, CRPS, (chronic regional pain syndrome) and say "You are perfectly fine. There is nothing wrong with you"?
I wish I knew. Don't you wish I was able to answer that? Me too. I cannot. It is bizarre to me.
On the one hand I do get it, at least at the beginning. Pain is invisible.
I say to you "I have pain that will not go away. I am housebound and cannot work. It has made me afraid, in the case of trigeminal neuralgia, of washing my face, going out in a light breeze, or the cold, or wind." You look at me and go "oooookay." And roll your eyes.
I remember a woman who was at the pain clinic at the same time I was, in 1980.
A statue fell on her foot. Within a short period of time she had bodywide severe pain, even trouble with incontinence. No doctor believed her. My impression at the time was that she was there so they could help her realize her pain and other issues were psychological. I listened to her and even though I was disbelieved at the start, and knew how that felt, I thought it was probably psychological. It just did not sound like something...real. If she had waited until about 1986 she would have had a better chance of being believed as the symptoms of CRPS (then called RSD) became acknowledged as a real pain syndrome and disorder.
On the other hand, Dr. House, on the TV show, said 'I act this way "between arrogant and unhinged" because I am in pain 24 hours a day, from severe to untenable.
Is this what is expected? Those of us in debilitating pain have to behave in a specific way in order to be believed. If we are not screaming in pain, how bad can it be? But if you are screaming in pain continuously chances are good you will be seen as a 'nut'. I daresay for many of us, behaving "arrogant to unhinged' would only further the disbelief.
My father said to me, more then once, "I see your read so I know you can read." negating any middle ground. No other disease I can think of offhand (and I am not including psychiatric disorders here) requires a middle ground, requires a leap of faith for those around us to accept our pain and disability.
What do we need to do? We need to accept the limitations of our loved ones, friends, colleagues, even acquaintances. Even when they refuse to accept ours.