I was at the insurance agent’s office and the discussion turned to people disabled by chronic pain.
She expressed skepticism that everyone who says they have chronic pain actually has it. I think that is a legitimate question. Given the invisibility of pain, how do you know?
What interested me the most was her criteria for deciding if a person really has the pain they claim to have.
“Sometimes someone will tell me they are on disability or disabled by chronic pain, but then they don’t talk about it. It seems to me they would if they were really suffering,” she said.
I smiled sadly.
I rarely talk about my pain, but family members have told me, “You talk about it too much.”
I’ve asked other people what they thought — if I complained too much or found a way to bring my pain into a conversation. To a one I was told, “No, you almost never bring it up.”
I recall a kind doctor taking pity on me when I was in an out-of-state hospital for a protracted period. He asked if I wanted to go with him to the medical library in another building.
“You need some time out of here,” he told me.
I happily went with him. It was breezy outside, so the walk to the library was not much fun and triggered the trigeminal neuralgia pain.
Once inside he went off to look for his books. I was in tremendous pain and found a private corner where I could hide as I tried hard not to cry or make pain sounds.
I kept a watchful eye out for the doctor. As I saw him coming towards me, I fought my way into a smile.
“I looked for you earlier but couldn’t find you.” he said.
Feeling sheepish and embarrassed, I replied “Well, the tics would not stop. The pain was really fierce so I just went and found a place to hide.”
“Why didn’t you come find me?”
“You were doing something nice for me. We were just two people, not doctor and patient, so I didn’t want to mention the pain.”
He gave me a look of disbelief. I understood what he seemed to be thinking: “What’s wrong with her? Why didn’t she say anything?”
Between my family’s refusal to accept the reality of my pain and doctors who sometimes seem to be fighting my acceptance of the pain, I had learned my lesson well. It was better for me to keep quiet about it.
The other side did not occur to me: If someone doesn’t talk about their pain, then it must not exist.
It would be wonderful if there was a sign — besides facial expressions, falling into silence, removing ourselves from a situation, or refusing to go places and do activities — that spoke about our pain for us. Too often those signs go disbelieved or ignored.
It is just one more instance of darned if we do and darned if we don’t.
Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.