People in Pain Fight What Others Can’t Understand
/By Carol Levy, PNN Columnist
“We are so fond of one another, because our ailments are the same.” Jonathan Swift.
That does not apply to those of us with chronic or intractable pain. Our “ailments” are different. Very different. Painful conditions caused by genetics, trauma, medical error or sheer bad luck. Many healthy people don’t know such pain can exist.
In the 1980's, organ transplant rejection was thought to be psychological. Then they learned that it is not in the mind. It is the body doing the rejecting.
Forty years later, many doctors still believe chronic pain is in the psyche. Hopefully, more are accepting that the mind is involved in chronic pain and helps determine how we respond to it, but it’s not where the pain originates.
As difficult as it is for us to accept persistent pain and the resultant disabilities, it makes it even harder when doctors, family, friends and colleagues say, “Oh, c'mon. It's not that bad. You just think it is. So you can think it into being better.”
Mindfulness, relaxation techniques and meditation are helpful -- to the mind. They help some of us deal with the pain, but most still need the benefit of opioids and other pain medications, treatments and physical therapy.
“I don't want my pain and struggle to make me a victim. I want my battle to make me someone else's hero.” Unknown author.
How often do we hear that? First usually comes the praise: “You are a true pain warrior.” Then the gut punch: “Your pain and struggle are such a good example to others who suffer. You should be grateful. That’s why you have the pain, to be an example.”
I'm sorry, but I don't want to be in pain every day so someone else can learn from my fight. It is a nice side benefit, but it is not why I fight the pain.
Chronic pain does make us different from others. We talk about it a lot, online and elsewhere. Cancer, diabetes, heart disease and other well-known illnesses -- people know and understand them. But Ehlers Danlos, CRPS, trigeminal neuralgia, arachnoiditis and other names too long to list are still the stranger in the room.
It is a struggle for us every day. We fight what others can't and don't want to understand. Because it is a feared ailment once they know it exists.
Our fight is with us at all times, in whatever we do or try to do. It is daunting.
“Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.” A.A. Milne
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 is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.
