Knowledge Is Power but Experience Tells the Real Story

Knowledge Is Power but Experience Tells the Real Story

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.

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Authored by: Denise Hedley

Denise Hedley was first diagnosed with fibromyalgia in 2009. Her condition has worsened, and was diagnosed with bilateral RSD in January, 2019. She also suffers from Osteoarthritis, 2 herniated discs, and Systemic Lupus Erythematosis.

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Denise E Hedley

Please excuse typos – the cat is attempting to help. I don’t judge and i don’t disrespect. I appreciate different opinions even if they don’t agree with mine.

My Facebook experience was mine and mine alone and did NOT involve other cpp. It involved a very different group of people. I asked you to contact me privately so i could explain a few things and so we could better understand each other. I repeatthat request.

Denise E Hedley

Cindy – i don’t people. I never have. I don’t understand why you see me as such a threat to you.

I really wish you could contact me privately instead of airing all of these feelings in public. It’s not fair in any way.

You’re not theonly one who had been horrifically sick lately either. I’m fighting yet another bowel obstruction. I don’t know if i can keep myself out of the hospital.

The thing that bothers me themost is that i am no extremist. Never have been never will be. I just don’t like being attacked over my opinion.


Part 3 to Denise

I just re-discovered your Aug 23 column, where you complained about a lot of bullying and backstabbing when you joined various CPP groups.

You wrote, in part:
“I was made aware of backstabbers – in our own community – who decided that I wasn’t who I seemed.”

You seemed shocked and hurt that any CPP wouldn’t embrace you.

But maybe your extremist views alarmed them as they alarm me. That while we all share the goal of access, not all CPP’s share your approach as to how to get there. And your unfriending 137 people in 1 day indicates a personal approach instead of political. But this is political.

Ironically, even though you complained vehemently about how you were treated, you accuse me, a fellow CPP who has suffered terribly, of the same thing you were accused of.
You posted to me:
“… really doesn’t sound like you are on our side.”
I think that’s a truly horrible thing to say, esp since it clearly had no foundation. I wrote my brief history for you. There’s no doubt whose side I’m on; the side that wants access.

You also diminished my pain b/c I was put on a forced taper and not totally cut off the way you say you were.

Please dont’ compare your pain to mine; or to anyone’s. No two people should ever try to make that impossible comparison. Especially people on the same side of this life and death issue.

It sounds like you’re treating me exactly the way you complain that others treated you.

I think that your approach, which distorts facts, and attacks, alienates, and insults people we need as allies, is simply bad politics.

But I know we share the same goal of access.

All CPP’s should be allies. We cant’ accomplish our goal if we’re so divided that we’re attacking each other.

I hope you’ll reflect on this before attacking other CPPs as not being on your/our side.

And I hope you’ll reconsider your political approach.



You certainly have as much right as anyone else to say what you want.

But that doesn’t mean that NPR or any other website or media has to publish your columns.

The First Amendment applies to the Govt; not to private companies.

( I used to be a lawyer. You are not the only educated person here.)

A published author tends to carry more weight than people like me who merely post comments.

When a website like NPR publishes a column, presumably the Editor and others with appropriate knowledge support it, which gives it more weight.

When I read NPR columns containing information presented as facts, I believe them. The recent Sept 11 comment contained a ton of information that appeared excellent, and I have a note to remind myself to print it for future reference. I hope that faith is warranted.

NPR has allowed you to assert your opinions as facts and to call the opioid epidemic “fake”. When I questioned your calling the epidemic “fake”, you gave me your reasons for doing so. But, your column called it “fake”, with no reasons. People who arent’ informed may believe you. That concerns me.

Do I have to re-evaluate my faith in every NPR column?

In your last post to me, you wrote essentially that opinions that can’t be scientifically proven can become fact, if loud enough.

Like anti-vaxxers’ opinions? Like the Trump Admin’s loud climate change denials and that Alabama was in the Dorian danger zone? Your writings scare me.

Given the goals of NPR and similar org’s — to get relief for CPP’s — to get back our opioids — I do believe that your columns in the nature of this one, with which I strongly disagree — should be declined by NPR b/c they hurt our cause.

Finally, this is not personal, even though you’ve tried to make it so. This is political.

See Part 3 of this post



After my last post to your column, I deleted that NPR email and moved on.

But just now, on Sept 13, I was telling someone about your column and our discussion, and went back to NPR’s website to verify your name.

I just saw your post directed to me, and asking me to contact you.

I’ve been extremely ill for over 2 weeks with problems not related to my pain, on top of my pain.

I’ll consider emailing you when I feel better.

But I’m not sure I see the point.

For you to say that I, a CPP who has suffered for a decade, and who considered suicide due to a forced taper, is not on the same side of this issue as you, shows how totally extremist you are.

For you to say that my less inflammatory approach is “inflaming” things makes zero sense.

Unfortunately, politics are involved in getting relief, and I strongly believe that you calling your opinions “facts”, calling the opioid epidemic “fake”, ignoring the suffering of others, and insulting the people whose help we need, all hurt our cause

I differ in approach, and honestly, your approach scares me just like any other extremist approach, but I would never say that you’re not on my side.

But, b/c I differ in approach, you say I’m not on your side.

So, now you not only insult people who want to hurt us, but you insult another “pain warrior”.

You seem to want to divide CPP’s — if we’re not with your, then we’er against you.

No room for different opinions in strategy.

Given your total extremism, I dont’ see the point of a direct discussion.

I dont’ have the energy for what will clearly be talking to someone who refuses to even consider another approach to the same goal.

In private, I sometimes yell and rail against the bad guys. And when my pain is really out of control, it’s much easier for me to lose control.

But what I do in private is NOT what I do in public. Because my private anger and outrage expressed in an uncontrolled manner will not help me or anyone else.

see Part 2 of this post

Cindy – I had an experience today that tells me that should not keep my mouth shut at all. And I believe that you are inflaming this whole situation, and I feel like you are for some reason making me a target at which to throw your own anger.

I was at the doctor today which, in our world is never a fun thing. She told me that she had read my articles and that she feels that I am spot on in how I’m reading things.

She also said that she believes that we pain patients are the keys to changing things. She said that she believes that we DO need to get louder. We need our opinions and our experiences to be heard.

Now – on another note – I am a research junkie. I made it through everything but my dissertation while working on my doctorate. The only reason that I wasn’t able to finish my dissertation was because I suddenly had to work more than100 hours a week on a 6 month project.

I know that facts and opinions differ in many ways. I also know that if enough people share the same opinion about something that cannot be scientifically proven, then that opinion can become fact.

I like to empower others the way I have become empowered. Your accusations are very hurtful and it really doesn’t sound like you are on our side.

You say you were force tapered? I was cut off as was every other patient at my doctor’s practice. I have a number of doctors who I now consider very dear friends. They tell me that I’ve got it right. They tell me to get louder while you are telling me to shut up. You want me censored. Here in America, we have this little thing called freedom of speech.

Since my writing about it is how I distract myself from the fact that my pain on a good day is an 8, I have no intention of stopping any time soon. Please email me as I do have a couple things to share with you. Make sure to select a topic that will catch my attention as I get a lot of email.


I guess after more than a decade I am still naive to all of this. When seeing my dr a couple months ago I was telling her how uncomfortable my PC nurse practitioner was making me feel about myself, and before I got up to leave, I said blatantly, I think it’s BS how she is treating me like I’m an ignorant child, she works for me. I was stunned when she she no not really. I went home feeling deflated, and I wondered why do I even bother. Now that I have picked myself back up yet once again, I came across some folks discussing how unfair the medical professionals are treating people in general now days, when one nurse made the comment “Can I get it in writing in my file that your refusing to treat my symptoms, please” So in September when I visit my PC again, and after I talk with her about my symptoms and if she isn’t willing to change my plan of treatment. This is what I will be saying to her. I highly doubt it will change anything at all, and she may ask me to leave or fire me as a patient. But since they are supposed to write everything down, it will be in my file. I’m so sick of being treated like a junkie, I need some relief.



Instead, they hurt our cause b/c of the extremism and ignoring of facts, and ignoring the pain of those affected by opioid abuse, and b/c of your insulting people by asserting that you know, as “a fact” what they would do in a certain situation.

So, do you want to vent to let out your anger — which feels good and “gins up your base”, — or do you want to try to truly help CPP’s and change policy and public opinion?

I hope the latter. And I thought that NPR stood for the latter. Which is why I hope your last column was your last one of that nature that I will see here.


Denise – I am the person who called you extremist and frightening, and I really fear that you hurt our cause. Your rhetoric is no less frightening to me than that of any other total extremist.

Yes, you are writing an opinion piece, but when you say that “x is a fact” you are still presenting it as a fact. Op eds are opinion pieces based on facts. They contain facts. Just b/c you don’t present a citation doesn’t mean that you can, or should, assert something as fact which you have, in fact, made up.

A HUGE problem in our country is that liberals and conservatives live in different universes of facts. Your asserting things as fact when they are merely your opinion is wrong.

People MUST share the same facts. Otherwise there is no hope of ever reaching the same opinion on any issue.

And pain is not a liberal or conservative issue. Pain is a universal issue. Anyone can be the next victim.

Instead of calling the opioid crisis a fake, which is a non-starter with almost everyone in America and will cause them to label you a kook and ignore you at best, and mock you at worst, it would be helpful if instead, you explained what you wrote to me.

Asserting as “a fact” that anyone else with your pain would be in the E.R. in an hour, when it cannot be a fact, causes your credibility to lessen even more.

If you write in a way that gives you no credibility, then why should anyone listen to you?

I’ve suffered from horrific chronic pain for over a decade. I’ve lost my career, most of my friends, some of my family, and my S.O.

I’ve suffered thru a forced taper and which caused me to consider suicide.

I’m on your side of this issue but find that you sound like someone who can’t distinguish fact from fiction. So imagine how our opponents perceive you.

Your columns clearly make some fellow sufferers feel better, as indicated by some comments here, but they won’t help our cause.



Oh yes you can have shingles more than once. The 3 days of pain rx they give you hardly covers the miserable 6 weeks of trying to remain above ground while you painfully slowly heal. It’s not like anyone wants to be around you during this painful experience. The embarassment of going out in public when you need dog food toilet paper and bottled water because no one is there to offer n realize the suffering your going thru alone is mortifying. Be a real walk in another’s shoes if all those who have played righteous in this faux opioid crisis got shingles all at once. And again .and again. That would put a shoe on the other foot. Or in a mouth.


Molly, my heart sank when I heard about the Johnson &Johnson verdict. The backlash will be felt by all CPPs I’m sure. Since 2016 we’ve made almost no progress in fighting the power of our crazy government and the shameless media. My own family is supportive and sympathetic but don’t really get it. No one well can truly understand the relentless constant pain and the strength needed to push through it. Be realistic. For God’s sake do not try to impress your doctor with your internet knowledge of medicine or believe he or she will ignore their medical expertise based on your “experience”. Remember that old adage your other taught you.? You can catch more bees with honey than vinegar? I think that’s how it goes!! LOL


Molly, I do not remember any advertisements promoting opioids or claiming them to be non addictive. Do you? That is the basis of Oklahoma’s lawsuit. We are certainly “pounded” by ads for treating diabetes, depression, IBS, and more. I think it was the Doctors who were given the [edit] about Vicodin and Percocet. In any case, it is s fact that a national drug problem was not caused by prescriptions anyway. The Government and Drug companies are both guilty. Laws in this country do not “protect the innocent”. They work best for the criminals.

I appreciate your statement Denise let you know your body. That’s the exact words I needed to tell I surgeon and PCP. I think you have the right to say what you want to say to your doctor or in your post. Everyone else can say or do what they want as they have in their reply. LOL. I do like what person replied about about making out loud who wants 100 million votes. I use that in a letter then I was no longer voting to a representative. All I receive back with her stupid recipes and what they been up to articles. Send it to trash. In Dr David Nagel book ” needless suffering” he says people that are on those committees really don’t have jobs that keep them busy like regular pain management doctors and are usually people who have less to lose and trying to step up career-wise. I will say like Andrew Klondny. Why do you think they want to build a wall for to keep drugs out so CCP like the guy using heroin BC he can no longer get medical treatment w/ opiates here. They’re trying to force everyone onto marijuana that lines gov pockets. Surgeons are increasing surgeries BC afraid of gov ran insurance for everyone. That will be a disaster for everyone. Countries that have it only treat who’s worse off first you have to wait in line , I’m not talking ER line wait but years.

To the woman that called me extremist. I don’t put myself out there thinking that everyone is going to love it. I wouldn’t be able to write if I worried about that. Okay…here goes…

I call the Opioid Crisis a fake crisis because of the way it is portrayed – and that is that the opioid crisis, overdose rates, and heroin use can all be linked back to the legal prescription of the chronic pain patient. That isn’t right.

The crisis is due to those who do become addicted and then have to turn to the streets. They are then poisoned by the pain pill look-alikes that are actually very potent and dangerous forms of illegal fentanyl. The fentanyl is also being cut into the heroin on the street which is creating a very ugly addiction…but one that should not be traced back to us nor is it one that we should stay quiet about because ultimately, we are the ones being affected.

When I write for National Pain Report – which I actually really love doing – they are truly op-ed pieces. The “facts” that you are so concerned that I am making up? They are my opinion. If this was a formal research paper, there would be citations. And if I do need to incorporate facts that I had to research, be reassured that I will most definitely quote my sources.

I’ve been told that I’m speaking for many. That means a lot to me. It makes me feel something less than worthless. It has put a spark back into my life.

But if you are disturbed by it, that’s your prerogative. Don’t read what I write. Simple as that.

We do still live in a country that prides itself on free speech, and this is my way of speaking freely.

Glen – I agree with you, and I have learned to play the game accordingly when in the presence of the all-powerful MD people.

My primary care figured me out pretty quickly. He freely admits that those of us with challenges like we have know our bodies better than anyone else really could. He also believes that we should be heard. As a matter of fact, he is one of my greatest cheerleaders.


It is not wise to try and convince Doctors that you have extensive knowledge and experience. If you were really smart you would play stupid and tell them how wonderful they are. You don’t have to believe it but they do.

Just heard on the radio that Johnson and Johnson has been “successfully” sued as culpable in addicting customers to opioids. This is another nail in n the cpp’s coffin. Does anyone else see even more of the public, media, politicians taking this up as another battering ram to beat us with?

Thomas Kidd

Trusting in man’s government is futile to say the least. In 1920 government decided to outlaw alcohol and the result was a crime wave never seen in this world prior to that time. This evil wicked thing done to innocent people suffering is doing the same thing, creating criminals, according to the foolish laws of our land. For decades our government schools and some so-called Christian schools have taught that man is but a higher from of animal. Evolution has destroyed millions and millions and continues to do so. History was dropped from school teaching on purpose. If our elected officials would know and understand history perhaps they would make right decisions on the injustice brought upon us by a few poor excuses for humans at the CDC and the unconstitutional DEA. Our nation began as a Republic with Republican form of government but didn’t continue long. The words of the Declaration of Independence was laid aside for the so-called building of the nation. “We hold these truths to be self-mistreated ahat all men are created equal and are endowed by their Creator with certain rights, among which are life and liberty and the pursuit of happiness. The black people brought here in bondage were kept that way until the Civil War in 1861. A little progress was accomplished afterwards but was allowed to put those people right back into slavery. The South is generally blamed but the very people who freed the slaves stood by and allowed the horrible thing that came upon the black people as well as many white people. The law of sowing and reaping cannot be circumvented by saint nor sinner nor nation. God’s judgment upon a gross sinful people isn’t spoken about. We cringe when we discuss the murder of 6million Jews in the Second World War but our country legalized the murder of the unborn in 1973 and we have surpassed Hitler by millions. At this dare 70+ million babies have been murdered. Is it unthinkable that the sick and suffering and dying would be mistreated

Thomas Kidd

Thank you for your commentary. And you’re correct. But it’s not just the CDC. They issued an explanation of their recommendations but very few doctors listened to them. I have read their recommendations and it was written to primary care doctors not pain management doctors. But let’s remember that the DEA is the ones threatening doctors and arresting many, taking their everything. I can understand their fear of having their freedom taken away. But still they should stand up for their patients and fight for us. I have reminded my pain doctor of my rights as an American with disabilities. And that the contract I had with them, they have broken about all of their agreement with me as their patient. I would encourage everyone to remind your doctors of our rights under The Americans with Disabilities Act. Do it in a kind manner. Hang in there friends and pray if you know Jesus Christ as your Redeemer. This is my anchor in my suffering. I hope getting loudee helps bring back intelligence to the medical community. God bless all. Thomas Kidd a more than 30 year chronic pain sufferer.


Denise – This column, like your last one, scare me by the extremism. I think that statements like yours and making up your own facts hurt our cause.

There are times when I feel the way you do, but saying those things to myself or to a loved one isn’t the same as going public.

In particular, calling the opioid crisis a fake, is not helpful.

I used to feel that way, but dont’ anymore. There are parts of this country that have been devastated by opioids; places where every family has been touched by death.

While it’s not fake, it’s also not caused by legit pain docs and CPP’s.

The epidemic is caused mostly by illegal street drugs, but also by some bad actors in the medical and pharma industries, such as pill mill doctors. You can’t ignore that.

Our fight needs to focus on making people in power, and the general public — esp those affected by the epidemic — understand that CPP’s and our docs are NOT the same population as those involved in the epidemic; and so we should not be punished for their actions.

I understand and feel your pain, and your anger. Last nite, I finally took a shower, did a laundry, and loaded the dishwasher — my goals since last weekend. I felt like I climbed Mt Everest for doing such basic things.

But, screaming and ignoring facts will not help our cause.

Saying things like:
“…. 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.”
is not helpful.

You can’t assert things like this as facts when you have no basis. Plu,s doing so insults the people you are trying to appeal to.

Just like saying the opioid crisis is fake when so many facts to support its existence and so many people have lost loved ones to it.

Making up your own facts, and ignoring the pain of others, causes you to lose credibility and hurts all CPP’s and our fight.

I hope you will consider this.

And I hope NPR will consider this before publishing more columns like this.

James McCay

Another wonderful “ME ALL OVER THE PLACE” post Denise.
I took my very 1st IQ test ever at age 38 in 2005. I scored 126, but I rushed because my Borderline Personality mother was coming home soon. She made me put MY COMPUTER in her room (so SHE had easy access) while I’m living 2-floors down Physically Disabled (paying $400 a month “rent”). This is what I HAD TO DO at that time, but ONLY when she wasn’t home (people like her have to have everything exactly THEIR WAY, and only if it was THEIR IDEA w/close family members!).

When I finally got my Soc. Sec. Disability in 2006 with back-pay I bought a laptop I could use from bed. I took four more IQ tests (two different sites) in a year, the reason for that is I scored 130 on the 2nd test (same site as 1st), and I recognized 2-questions I had trouble with the 1st rushing.
So on the 2nd site I rushed the 1st & got 126 AGAIN! Took my time & got 130, recognizing the same type of question I recognized on the 1st site. Last time I did a bit of research to know the average time to do an IQ test (I don’t remember). So I set a timer, and scored a 130 again. Three 130 results, two 126 results. Not bad.

I used every single point of my IQ learning how to master computers from 1997-1999. When I started getting “ghost” pain 2-years later in 2001 (Degenerative Disc Disease), I researched everything greatly online (when most were accurate facts on medical sites), even doctors answered questions for free!

Then as diagnoses changed I researched those greatly too. So I became a well rounded Neurology intern (sort of). Then diagnosed with General Myasthenia Gravis (MG) & an enlarged Thymus Gland; researching those was much harder, but I did it from so many different sites because no one site accurately describes them at all.

It’s far better to know everything you can learn about your illnesses! You NEED to feel doctors out before letting them know- YOU KNOW ANYTHING!

Karen Smiley

How about we just say, “Hey! Who wants 100 million votes in 2020?”


Remember when age equaled wisdom and knowledge equaled power? Yeah, me neither.

Gail Honadle

Until you remove the culprits CDC Director Robert Redfield and Addiction Shrink Andrew Kolodny, replace the entire PROP committee who told the LIES, Propagandized the language, made us the Soft Targets you won’t make any inroads. They are still peddling the same lies they told originally. And politicians have used the same language and same erroneous stats no matter how loud we scream LIAR at them. Min. is going to Levy a TAX on Pain Prescriptions to bring down the OD numbers. Trouble is you can’t Levy a Tax on a Illicit Street drug dealer you can barely find them much less collect a Tax from them. Only on Legitimate patients. Try Levying a Tax Of the cost of the Narcan and Hospital use on Every Person who OD’s instead.

4 ways Minnesota is fighting the opioid addiction crisis


Denise, another EXCELLENT post! Very well said! And point taken in your last sentence! Thank you! Keep strong Warror, Maureen M.


Denise, excellent article! Well done!! We need more articles like this! We need to be heard!!! Thankyou, Deb


How do you get your senators to listen?
Yes we need to get louder but when you are ignored censored and told by your Dr they simply Do Not Care its hard to find a voice.

Jeannette mastenbrook

And 60 minutes done us no help last night by airing a rerun on the “opiod crisis” . Most doctors do not over prescribe and most pain patients take their meds responsibly. Is it not a journalist responsibility to report on the WHOLE story and facts. Yet 60 minutes has failed to report how it effects chronic pain patients and how are lives are changed forever.


Insightful and well-written, thank you, Denise. While after years of being undertreated for pain and/or unresponsive to medication, I stopped opioids altogether four months ago because frankly the 15% pain relief they provided just wasn’t worth the condemnation, suspicion, and humiliation most chronic pain patients in so-called “pain management” programs experience at monthly doctor visits. I will continue to fight for the rights of others’ access to pain medication LOUDLY!

Howard Kobel

I cant agree with you more. I survived an attempted murder, crushed by an SUV. 2 surgeries, countless procedures , only opiates provide me relief. Furthermore, i had a girlfriend who was addicted to my meds. Our relationship is over because she cant be around my meds. Her fear and the fact she is a nurse caused doctors to discontinue my meds. I lose consciousness from the pain i suffer. Countless sleepless nights. I now use heroin to help control my pain because without any relief i want to committ suicide. Have you noticed this fake epidemic is about the Govt wanting to find a cash cow. They get settlements but we the victims live 0 quality of life and suffer. Long live the USA and the wisdom of those who think for others. I do try to find humor in this but sadly im running out. I plan to leave the USA shortly so i can live my life comfortably. May God bless all of us and may he bring us a solution.

Lynne Norris

YES! YES! YES! A thousand hallelujahs! Thank you for writing what so many of us have been trying to say. My thoughts and prayers are with you always.