Support and advocacy information for individuals dealing with chronic pain.
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There is no excerpt because this is a protected post.
There is no excerpt because this is a protected post.
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Why patient engagement won’t be fixed by Friday I have lived with chronic pain for more than 37 years. I have facilitated a peer support group in Los Angeles for 27 of them. You learn something when your work is measured in decades instead of quarters. You learn that the things most worth changing rarely…
On comparing yourself to the person you used to be Ever compare yourself to the person you used to be? I don’t have to imagine him. He hangs on my wall. A wall full of medals and certificates, framed and dated, every one of them saying the same thing: this man was competent at his…
For most people, an earthquake or a wildfire is a single emergency — the ground moves, or the air turns to smoke, and then the long work of recovery begins. For those of us living with chronic pain or a chronic condition, it is almost always two emergencies stacked one on top of the other.…
How the ACPA Quality of Life Scale measures the day, not the hurt. Every person living with chronic pain knows the question. You walk into the clinic, you sit down on the paper-covered table, and someone asks you to rate your pain from zero to ten. I have answered that question for thirty-seven years. I…
A clinician said that recently. I have been thinking about it ever since. Someone passed along a remark a clinician had made. The question was whether patients belong in the room where research gets designed. The clinician’s answer was clean and confident: they did not need to hear from the patient. The science speaks for…
People ask me how I got into chronic pain advocacy. The honest answer is I didn’t plan it. I lived with pain long enough that I started paying attention. Then something specific happened. I joined a chronic pain support group, and sitting in those rooms, I realized the problems I’d been facing weren’t mine. They…
What twenty minutes at the kitchen table taught me about fifteen minutes in the exam room I have been a patient with chronic pain for a long time. Long enough that I have lost count of the exam rooms. Long enough that I can tell, in the first thirty seconds, whether the visit is going…
For three days this week, I could not think past the end of my nose. A flare of chronic pain arrived with complications from diabetes riding alongside it, and the two of them together cleared my calendar without asking. I stayed in bed. I waited. My only job was to let my body do whatever…