“Can you describe the pain for me?”
This is a familiar, and often frustrating question for both patients and doctors. Especially for many XLH sufferers who invariably deal with chronic pain during their lives. How do you describe something to a medical professional that simply defies explanation? And how does a doctor interpret the varied phrases and descriptions provided by the patient?
I’ve read stories of patients becoming upset by the inability to accurately give details to their doctor. The doctor’s understandable frustration never helps, either. Nobody is at fault, of course. Pain is different for everyone. My daily pain varies in location, intensity and type. And my mother describes her XLH-related pains differently.
For example, I have osteoarthritic pain in my hips. Because the joint can stick and click sometimes, that can be very painful. But, what kind of pain? I’d say a burning ache that builds to a sudden stabbing crescendo, followed by blissful relief once the joint clicks and frees itself. As for my back pain, that’s different again. At rest, I have a mild to dull ache in the lumbar muscles. If I’m working in the kitchen, it builds in intensity and spreads across my mid back and then becomes pinching with every movement. And at that point, I know to sit down and rest if possible.
I’d almost liken the effort of describing pain to a beloved pet dog trying to tell us they’re not well. We know the signs, such as a limp when the dog is walking, or raising a paw to have it checked, or even not eating. But how do they explain it?
I think both patients and doctors need to find common ground. And one brilliant article I read recently by Christine Miserandino describes “spoon theory.” It is something a lupus sufferer created to describe her condition to friends and family. Spoons represent her energy on a given day, and every task takes one spoon away. By having common terminology, we can make it easier for all. After all, understanding our bodies and pains more won’t hurt, will it?