Tape a Lego to the Bottom of Your Foot

I’m not going to argue the opioid crisis. I would never tell someone suffering from chronic pain that they shouldn’t take so and such anything that may help them, physiologically or psychologically. Everyone has to make that choice, preferably with the help of a competent doctor who has done the research to know what will actually touch the constant fibro pain – if anything. I’ve made the choice to give up on pain meds. I’ve made the decision that my brain functions better under the stress of constant pain than it does under the numbing influence of opioids and that a clear brain is necessary for the quality of life I choose. My choice. 

A few days ago I was distressed to see that articles are circulating about “pain acceptance,” that doctors are advocating “pain acceptance.” I’m not sure what “pain acceptance” is supposed to be. I come as close as possible to “accepting” my chronic pain as I can, simply by making choices to move when I hurt and to stay away from drugs, but I don’t accept my pain.

The biggest problem with advocating for “pain acceptance” is that it opens the way to missing diagnoses for things that can be cured or alleviated. I’ve told the story before about my massive pulmonary embolism, walking into a doctor’s office saying I think I have a pulmonary embolism, explaining the shortness of breath, the stabbing pains in my side, having the doctor look at “fibromyalgia” in my medical record (next to a blood clot diagnosis) and saying, “I see you have fibromyalgia.” He sent me home. Three days later I woke up on the bathroom floor in the midst of a “near fatal episode.”

There can be no pain acceptance without due diligence, and if doctors are really pushing patients off pain meds and telling them they need to “accept” their pain, they need to be prepared to listen to patients when they have new symptoms and make sure that the patient is still “healthy” even if in pain.

I have an understanding with my doctors – I don’t see them a lot, I don’t contact them, unless it’s something new. Usually I only see him (or her, I have residents for my doctor and they switch out every three years) once a year for my yearly, and at that time, I’ll choose what I’m concerned about. Right now I’m working on unusual, ongoing abdominal pains. He’s putting me through tests for celiac, ulcer, etc, and has not ruled out an endoscopy to make sure there isn’t cancer because there is cancer that runs in my family. It’s a balancing act for us, and I think it helps that I’ve refused meds that I can’t take anyway. There is no doubt in the doctor’s mind why I’m there and what I want, and I reiterate my purpose in talking to him all the time: I know any testing is probably going to come back negative, but I need to do my due diligence. Doctors understand that. Some are better than others in following up and ordering tests that would allow me to do that due diligence, but they understand and accept that concept. That’s “pain acceptance” with due diligence.

Where I see more of a push for “pain acceptance” is from society as a whole. People with chronic pain are the source of the opioid crisis, no? No, but I’m not going there. A friend of mine recently started having knee trouble. He, a person who has never made me feel uncomfortable about fibro, said that he was understanding better what chronic pain is like and that he sort of dismissed it before. I would never wish chronic pain on anyone (although sometimes I think doctors should have a chronic disorder before they can become doctors), but it’s really the only way people can fully understand. I look normal, I act normal, people tell me all the time they can’t tell that I’m in pain. I’m glad of that, but it means they don’t always understand when I do need that time to rejuvenate, even the people I’m closest to.

So maybe for awhile lawmakers and the healthy people who look sideways at those of us who have to think about every movement we make, maybe they should just duct tape a Lego piece to the bottom of their feet and tell them they have to do everything everyone else can do. Oh, you can take some ibuprofen – oh wait, that gave you a bit of an ulcer, try naproxen or Tylenol. What do you mean Tylenol doesn’t make a difference? Just take more. Just get used to it…

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