I have trigeminal neuralgia. It’s a facial pain disorder, arising from the 5th cranial nerve. It causes intense pain, sometimes triggered by the slightest touch; the kiss of a light breeze or a strand of hair brushing against the affected part of my face.
The pain could be so excruciating, it would bring me to my knees. It is also, like most pain, invisible. You can’t feel it, but I can. To believe in that pain you have to believe me, and you have to believe such horrible pain can exist.
It is this invisibility that tends to be the bugaboo.
When pain is visible, it is usually because of the effect of the pain; a limp, a cast, bruises. People believe what they can see.
By the same token, when pain continues past the time they expect it to last, and after the visible signs have gone, the compassion and caring often go with it.
It is bad enough that pain hurts. To add the emotional toll of disbelief can be overwhelming.
I once dated someone who kept insisting I ride with him on his motorcycle. Even though he was a doctor, he refused to accept my outright fear of the wind and wearing a helmet.
“I can’t. The pain from the touching against my face. I just can’t,” I told him.
He knew what trigeminal neuralgia was. He knew the horrendous pain. And yet he always said, “Sure you can. It won’t hurt you.”
If a doctor who should know better refuses to believe, can we, should we, expect better from family, friends and colleagues?
It is not that chronic pain is invisible but that other diseases are seeable. Most other diseases also tend not to have the prescription of narcotic medication as a major treatment.
Diabetics need their insulin. But no one asks them, “Do you really need to take that shot?”
Those with cancer rarely hear, “That radiation and chemotherapy. Is it really necessary?”
It would be the bizarre person who said, “I don’t believe you have cancer.”
But way too often those of us in chronic pain do get questioned or doubted.
“Your pain is not really that bad, is it?”
“I know you could (walk farther, make the bed, tolerate touch) if you really wanted to.”
“Is it fun taking OxyContin? What about codeine and morphine?”
I have even been asked more than once, “If you have any extra pills could I have some?”
Part of the problem for pain patients is not only the lack of visible signs; it is the lack of knowledge about chronic pain, its existence and the disorders and diseases that underlie it. People know about multiple sclerosis, but rarely do they recognize that MS can have chronic pain as a component.
Many other conditions that have pain as the main or sole symptom are unknown for the most part. Trigeminal neuralgia, complex regional pain syndrome (CRPS), and even lesser known autoimmune diseases such as Lupus are rarely heard about.
The other part is the media hysteria about the prescription drug “epidemic” that has demonized many of us for whom there are no other treatments but opiate pain medication.
In order for your pain to be seen and believed, you need to have something people have heard about, understand, or want to understand.
Cancer and diabetes are awful but their names are known.
We need to be more proactive about getting out the word that chronic pain exists.
There needs to be wholesale education from all of us that chronic pain is not only a symptom but can be a disease in its own right. The voices that have been the loudest have been those of skeptics, who have made us the bad guys in the “war in drugs” and who downplay the reality of chronic pain.
Until our voices are raised it will be hard to get the belief that comes automatically for so many other diseases.
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. Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.
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