Knowledge Is Power but Experience Tells the Real Story


National Pain Report

Posted on August 26, 2019 by Denise Hedley

There is something about being chronically ill that makes us need to know everything there is to know about what is wrong with our bodies. This, of course, gets us in trouble on occasion when the doctors take our knowledge of medical terminology and turn it around as proof that we are faking it.

I guess they didn’t get the memo. Chronic pain does not mean chronic stupidity.

We actually care. We are actively participating in our own care teams. We have gained a frightening amount of medical knowledge over the years just trying to understand our conditions. We know our bodies better than most. We deal with more in a short period of time, say during a flare, than many people deal within their lifetime.

That is in addition to what we deal with when we’re not in a flare. For us, the pain never really goes away.

Our experience adds to the knowledge we have accumulated. It enables us to cope with what is going on. It enables us to forge ahead through the abyss of opioid lies and laws that do little more than minimize our very existence.

Denise Hedley

I think we need to stand up and loudly use that knowledge because it is backed by our experience.

Those who have been responsible for the faux crisis have limited knowledge. They only know the scientific side. If any of them walked in our shoes for even one day, they would be on their knees in the ER pleading for help within hours. It’s a fact.

And I doubt they could handle any of what we face daily.

Because knowledge isn’t enough when justifying toying with the lives of millions. There must be both knowledge and experience…and sometimes, it’s the experience that tells the real tale.

It is experience that gave me the strength to call out the last doctor who told me that “everyone knows that opioids don’t work for chronic pain.” Experience tells me otherwise.

You can’t get shingles twice. Experience tells me otherwise.

The pain is all in your head. Experience tells me otherwise.

If you would get out and exercise, your pain would go away. Eight knee surgeries worth of experience in addition to advice from my doctors tells me otherwise.

And yet where does the knowledge and experience get us? Not very far thanks to opioid guidelines these days.

Personally, I’m sick of it.

It seems like we are cursed by our bodies, our knowledge, and now the CDC.

In the meantime, we can only do what we can do. We can participate in the Don’t Punish Pain rallies in October. You can go to the US Pain Foundation and work as an ambassador to help spread the word. You can call your representatives. Talk to doctors – let them know where you stand as a pain patient.

Just because we have something seriously wrong with us that causes us pain 24/7 doesn’t mean that we must be collateral damage. So far, we just aren’t loud enough. We need to get louder.


  1. Great read.
    I’m a proponent of doing what you want to your body. If you want a tattoo, shave your head, take meds or have something removed, you should be able to do it.
    I fought for decades for a Hysterectomy to cure my pain, but was told I’d be ‘damaged goods’. I finally found a compassionate doctor to help me.
    I am perplexed with this ‘opiod crisis’. I don’t think anyone fighting that cause has known anyone in pain.

    Liked by 1 person

    1. I agree on all fronts. My thoughts are IF we are going to point a finger for the opiod crisis we need to start with doctors. Then it can trickle down from there. Opioids are a part of my life and I have to manage it closely and accept it not feel ashamed about it. Thanks for the comments, I appreciate you. M


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