I know what it is like to have constant, unremitting, horrendous pain. I always thought that gave me a better understanding into someone else's pain. I sympathize, empathize and understand the words but do I really 'get' what someone else is feeling when they tell me about their pain?
My pain is in my eye, and was in my face. I always knew how lucky I was that it did not involve my body (that is- below my neck) so that, even though I was virtually housebound for years, because of the weather and the pain, I knew my body was able to do most of what I wanted it to do.
But recently it was not.
I developed a pain behind my knee which then spread to the whole leg. I waited about 2 months expecting it to get better. Instead it got worse. Walking was painful, the stairs to our second floor a major impediment. To get up to the bedroom I crawled up the stairs. Going back down I used my rump and scooted down, step after step.
Finally I saw a doctor. He thought it might be sciatica, something I never knew could affect the entire leg. He ordered x-rays and told me to come back in 2 weeks. The pain remained. It was a new disability. Even though I knew it was temporary (I assumed) it gave me an entirely new perspective on what it means to be disabled.
When I responded to people in my Women In Pain Awareness Group, and other support groups, I would say "I understand the pain you are going through." That was a lie. Not an intentional one but the truth was, I did not understand.
"I know how terrible it is", I wrote "to not be able to do what you want to do when you want to do it, or not be able to do it at all." I had no idea that my 'understanding' was only intellectual, not visceral.
The problem with my leg resolved with a cortisone shot. The pain and problems getting around were nothing compared to what happens when you have fibromyalgia, CRPS (complex regional pain syndrome), Lupus, or other bodywide pain disorders. It was only a short time and only my leg but I now have a better understanding of what they were talking about.
Many of us have had the experience of someone doubting our story of pain or not believing pain can really be 'that' bad.
It is hard to 'get it' when you don't walk in another person's shoes. I believed I did but until the leg somewhat incapacitated me I truly did not 'get' what it meant to have your body betray you and stop you in your tracks.
I empathized but I did not see at the deeper, comprehending level what their pain was doing to them. If I did not get it, and I know the life stealing ability of constant pain, how about others who do not know this level of pain?
I wonder if it is a concept so foreign to most people that it is more understandable when others do not understand than when they do.