Putting a human face on chronic pain – by Angela Yang
Pain is no stranger to me. Last year, I did a research project on chronic-pain patients and narcotics. Beforehand, I’d opined, brashly, “Doctors prescribe pain medications because it’s the easy way out.”
But when I visited the patients in their homes, I saw how crippling chronic pain can be. I learned that it can arise after losing people or things you love, or not being able to do things you once could do. Chronic pain robs people of jobs, family, self-worth, identity. It can tear the heart and crush the soul.
Here’s the problem:
My mentors say, “The goal isn’t to eliminate pain; it’s to cope with pain.”
But what does it mean “to cope with pain”?
Some of us with EDS ( Ehlers-Danlos Syndrome, a genetic connective tissue disorder) have such loose joints that any upright position causes increasing pain and becomes intolerable after more than a few minutes.
So does coping mean accepting that I’ll never be able to sit or stand for more than a few minutes? The amount of bed rest required to relieve my pain would quickly turn me into an invalid from muscle wasting.
Or does “coping” mean making reasonable use of pain medications to dull the pain enough to spend a few hours each day doing self, home, and child care? With pain medication, I was able to continue working for another decade after my pain become unmanageable. Without medication I’d have to spend my days lying down on the couch and stuck at home.
For someone like myself, simply interacting with the rest of the world holds painful hazards: the vibrations from driving or being driven (I sit on multiple pads), standing in lines (I crouch), walking on sidewalks (only in expensive athletic shoes), and, worst of all, sitting to wait. Sitting in a normal chair quickly starts spasms in my low back which gradually creep up into my mid and upper back and eventually into my neck to leave me with an excruciating headache.
Many of us have been using pain medications for years and decades to minimize bed rest and stay as active as possible. Many of us have never “lost” a prescription, “run out early”, or taken more than directed (though sometimes we may use less).
It seems to me that the issue is “quality of life”, which resists any definition because it can only be determined by the one who is living that life.
*Angela Yang is a medical student. This piece was originally published in Pulse — voices from the heart of medicine.
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