A Call to Action for The Chronic Pain Community

A Call to Action for The Chronic Pain Community

By Terri Lewis, PhD

Terri A Lewis, PHD

Terri A Lewis, PHD

Dr. Lewis has studied and written extensively about the U.S. healthcare system, which she feels fails the chronically ill. She called out the pain community recently on the National Pain Report—saying it was time to stop complaining and take action. Her story received, to her surprise, mostly positive response. Many readers asked “what can I do”. Dr. Lewis, who is a daughter and a mother of chronic pain sufferers, has some advice. We will publish it as she wrote it.

It is time to come out of the shadows;

to reset your relationship with chronic pain;

to take back your name and personhood status;

to reclaim your identities not as sick people with invisible illness but as persons who deserve and demand a seat at the healthcare decision and policy table;

to organize pain patients into a national registry;

to create state organizations and challenge existing institutions;

to arm individuals with a single unifying message across efforts;

to create educational programs that educate other consumers and their families;

to create educational programs that educate the community;

to get involved in drafting our own legislation and responding to rules that affect us;

to run our own reform candidates;

to put people on notice that there will be no decisions about persons with chronic pain that are made without people who have chronic pain at the table;

to question the validity of the status quo;

to support the efforts of those who can on behalf of those who cannot;

to assign your proxy to someone who has your back on days when it’s just too much;

to become knowledgeable about what is working and what is not working;

to regularly communicate with your local leaders;

People with chronic pain are not commodities that can be bought and sold for the benefit of providers.

You have the right to receive adequate and safe health care.

Nobody has the right to experiment on you.

If you can only do one thing, it is to come out of the shadows of invisible illness.

Make your needs known;

Collaborate in research efforts so that your needs can be identified, properly characterized and counted;

Define what matters to you.

Join a consumer network that is engaged in advocacy.

Become informed about what affects you.

Is it hard?

You bet it is.

Is it worth doing?


Can you do it?

You can do anything you want to do.

We make the change we want to see.

Nothing about us without us.

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Authored by: Terri A Lewis, PhD.

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Donna C

@https://www.lawhern.org/ I know I would CERTAINLY contribute to that “war chest”!


I have filled a complaint with HHS regarding the CDC practicing medicine, that my civil rights have been violated. I do not speak for anyone else, my pain is all I have to speak about. Dr. Lewis, I will gladly join any group you have that will lead to congress. I will not tolerate anyone assuming I am a drug seeking junkie. I do not look to be pain free, I look to be able to tolerate the pain I have, so it does not consume my thoughts and take over my life any more than it already has. I will not roll over and let the government think they are going to win the war on drugs on my pain issues. Any doctor that took the oath to do no harm, then just drop patients off class medication without titration, well you have to sleep at night too. When I think about all the garbage being tossed, the drug lords are cheering for the business, you see, they are not afraid of the DEA, CDC, HHS. Hooray for our government.

Jean Price

Richard Lawhern…great! I’ll be interested in their follow through! And I’m certain others will be also. So glad you’re in here fighting with us, and I know many will come to your aid if you have need of help or support with your efforts for us all.

Dave…any news from your end of things? You are also someone who gives us hope and works for us against all this craziness.

For “L” who provided the link to a law firm. I have entered a comment to the web page you provided, to open discussions with the firm about the grounds and funding issues surrounding a class action suit against the CDC. We’ll see if anyone there is interested.

Regards, Red

For those chronic painers who are invisible/silent the DEA is - and has been - getting their message out and indoctrinating the media since 2002 https://www.dea.gov/pr/news.shtml with press releases of all their WINS in the war on drugs. And many in the media just regurgitate the DEA’s propaganda without researching “the rest of the story”. That story can only come from the pts themselves. What would happen if a large chunk of the chronic pain community took stories of other pts that shows up in the media and sends those stories to the Federal and State Representatives and Senators as well as investigative reporters at their local TV media. How much effort does it take to create a list of fax numbers, emails, Face Book or Twitter handle and when you see a story about how State/Federal policies are harming, adversely affecting chronic pain pts… pass them along to the same entities, people that are getting the misinformation from the DEA. Maybe we can get some of those in the media to question what the DEA is sending out with press releases. The DEA is VERY BUSY telling their story to the media and legislators… Unless the chronic pain community collectively tries to undo DEA’s story… they are doomed to live under the “thumb” of the DEA… Sending an email or fax is normally free as is posting on Facebook or Twitter.. YOU DO NOTHING… YOU GET NOTHING…


@ Jean- You have a discerning intellect and are one of the most articulate and authentic person I have come across on the issues in pain care. You’re efforts and your voice are making a difference.
We have right on our side and as the saying goes the pen is mightier then the sword. We have the power of the pen. Our institutions use of the pen has been oppressive and lacks caritas and humilitas- not to mention a lack of freedom, individualism, and democracy. And so our institutions position from a moral, and values standpoint is weak. Most of their leaders lack real leadership qualities. And so, ultimately the institutionalized pain care system in America is a house of cards. A strong wind from those that believe in democracy, believe in freedom, believe in people in pain- will knock over the house of cards called “pain care” that our institutions have built. It was built on a poor foundation- a foundation that ignored what people in pain want, it ignored freedom of choice and was just built largely on greed and a modernistic philosophy that oversimplified the problem of pain and oversimplified the problems that people in pain face.I believe Mr Lahern is correct we need a big effort- and a legal effort. I say this because I know that almost 50 years ago there were articles calling for a bundle of rights for people in pain. Now we see, the results of people in pain not having rights- they are treated as serfs without rights- and often subject to discriminiation stigmatizing and degrading terms like “catastrophizer” and demeaning urine tests and inuendos or accusations of substance abuse. Government views people in pain as not being people, but as problems. Doctors receive a fraction of education on pain that veterinarians do- and even that they protest. So rational discussion with our institutions is great challenge since anyone with pain or anyone who cares about people in pain is “othered” and their ideas are either seen as folklorish or as alien to what institutions believe. This is the parallax gap. And clearly, people in pain now need to become a protected class if they are to have a good chance of being heard and treated humanely.
And so all who care about people in pain should do what they can to change the sorry state of affairs. To do otherwise- to sin by silence when protest is needed will make cowards and victims of all who are in pain and all who care.
My banners to Senator Schumer have been sent-” Democracy Matters” ” People in Pain Matter” It is time to let our representatives and the health care industry know we are determined to right the wrongs they continue to commit to those who suffer pain. It is time to change the inhumanity of our government and our institutions whose ears are dull of hearing and with closed eyes and hearts continue to mistreat people in pain.


If there is anything i can possibly do, i will. Ive suffered for 19yrs with a bad back. Medication is the only thing ive found after all those years that allows me to have some sort of life. I realize i will never be pain free but just a reduction is critical and for the person that said that opiods dont work for back pain absolutly dont know what there talking about. None of us suffering wants to tell our family or in my case my two preteen boys as there father that sorry daddys hurtin i cant do that with you because im not able to get the medication that would allow me to occasionally change that. Ive noticed over the years how much i need that medication and now that a doctor terminated my care im now in a serious situation that i fear might take me away from the one thing i was trying to get closer and more able for and thats my sons so please god to all the doctors out there, when you take the only medication that has the ability to keep mothers, fathers, grandmothers and grandfathers, sons and daughters from being in so much pain without it know by there suicide because thats some of our ways out when its this bad you are doing damage not only to that patient but to all there loved ones but this isnt talked about or even thought about. Please to all the doctors and to government officials please learn who you damage when you make these laws and ive always said that people that are in the amount of pain i am will do whatever it takes to get relief and severe chronic pain is as bad as alot of life ending diseases because chronic pain without relief can easily be a life ending disease. Ive always said if you havent ever been in severe pain for years you cant possibly understand so the only way people that arent in chronic pain is to really listen. Yes if there is something we can do from a legal standpoint or get our message out there in whatever way that it will be heard, please email me because there has to be a better way to address the abuse side than to make people suffer for no reason

Richard A. Lawhern, Ph.D.

Jean, I’m working to develop a commitment from a major NPO, for a campaign to raise a war chest to find an appropriately qualified law firm and sue the CDC and FDA for gross medical negligence. This will be a long process, and it’s one that I hope to start out “right the first time”. When I have something definite, I will ask the National Pain Report to publish an announcement of the effort and establish a forum for people who may wish to contribute.

And in the interests of fair disclosure, please be aware that although I have supported chronic face pain patients for 20 years, my doctorate isn’t in medicine. I’m trained as a systems engineer, operations research analyst and technical writer. My spouse is the chronic pain patient in our family.

Regards, Red

Jean Price

Dr. Lawhern…signed! What are your thoughts on the civil liberties groups getting behind us. Or pursuing a lawsuit? I’d be interested to hear both your opinion on this and Dave’s. Dave…I ageee we must not be passive, we must air our grievances and educate people every chance we get about the situation of pain medications being denied, the lack of research and funding for pain care, the discrimination, and the unhelpful…even destructive… policies and expose the untruths and the culprits! Many are already finding out that pain care is on its way out…when a child has a tonsillectomy and is sent hope with no pain relief, or a terminal cancer patient can’t get a refill, or a fall resulting in a broken hip only warrants Tylenol, A woman reported on Facebook she advocated for her mother to receive something for pain in the ER where she was seen for a broken nose, bruised ribs, and a broken hand. The reply was “we don’t do that now!” In regard to your first comments, I can’t imagine anyone not respecting your efforts and knowledge and your many out reaches on behalf of those in pain. Nor can I understand how anyone would say you don’t understand what pain is like and why people need medication at times! Your record speaks for itself, as does Dr. Lawhern’s and others who work tirelessly for better pain care and more honest processes. My own abilities are sporadic at best, spontaneous when I have a brief respite, and not ones that require a great deal of research or planning. I’m unable to follow through with consisten, reliable help for this issue…not because I am passive but because my physical situation won’t allow me. Not because of lack of interest….this is my life….I am part of this….yet I’m doing good to have clean underwear some days!! I don’t think being passive is AS much the issue as just being in survival mode for some and just doing what it takes to make it through the day. Plus, you are gifted in your ability to search out and correspond and draft effective communications….many are not. Recently an articled admonished us to come out of the shadows…but most of us don’t live there! We live in doctors offices and pharmacies and labs and X-ray departments, and in beds, recliners, couches..but not in the shadows. Many have offered help yet need specific direction. Many have been given directions to do things outside their abilities. I’m not sure if these issues are likely to change. That’s why I think it’s very important to have a nationally know champion, a person our advocacy groups can partner with, a person who might bring in other compassionate able-bodied helpers to augment both our nimbers and our efforts. Some have said we need to get off our “butts” and get busy. This isn’t really fair, and it borders on the abusive…as if we just want to complain and sit around and eat Bon-Bons! We are… Read more »


Richard. Thank you. I support your petition but I cannot subscribe to MoveOn.org. Sorry Good start though.


@ Jean Price- I have been castigated by those who claim I cannot relate to what it is to have pain and that i dont understand what terrible pain is. Even though I have been promoting access to opioids https://petitions.moveon.org/sign/cdc-withdraw-guideline?source=s.fwd&r_by=14845029 as i believe the individual in pain should be the one to decide what care is best for them.
Too many people in pain have acted like passive consumers of pain care and expect Big Brother to fix their pain and suffering. In a capitalistic society Big Brother is focused on power profits and privelege and not the individual rights of people in pain. They have yet to fully grasp what pain care is about and who pain care is designed for. Too many in pain remain victims of false consciousness” and have yet to awaken and emancipate themselves.
Although it is easy to sign a petition, few people in pain will even do that. They are not just people in pain but people in pain that have been politically passive and live in quiet and not so quiet desperation. It is tragic what pain care has become and how passive people i pain are when it comes to the poor politics of pain care.

Richard A.Lawhern, Ph.D.

We all want action to better the conditions of chronic pain patients. One element of such action might be to petition the US Congress to force withdrawal of the CDC standards on prescription of opiates in chronic pain. I have signed such a petition and I urge other readers of the National Pain Report to do so also.

I have added the following commentary to my signature:

The CDC guidelines amount to nothing less than an undeclared war on chronic pain patients. Patients are already being deserted by risk-adverse doctors — some of them without referral for management of opioid withdrawal symptoms. Potentially thousands of patients will suicide or be forced onto street drugs if these standards are not withdrawn and rewritten from the ground up. This time unlike last, the consultants working group should include qualified board certified pain management practitioners and patients themselves, as voting members.


Josephine Y

I agree with Mary Ellen. Those of us that can speak up for ourselves and others as pain advocate should join adapt.org . Adding our voices to their longstanding and effective fights for rights and changes in policies to keep from being left out of this fight. Without our voices and theirs there will be no looking out for pain patients or the physician who does continued or try to help often putting their career on the line and under the scope of the DEA and other watches for misuse of pain treatments. A doctor shouldn’t have to fear treating a patient and improving their quality of life by pain management, nor should pain patients be stuck with life causes pain so deal with it.

I Support nationalpainreport and all other organizations,dr’s,pain patients and all other people who care about other people in pain. The Ones that care more about people than money. I call them gods people,ask your self what would jesus do?,if you believe in Jesus ,then ask your self what would the humane thing to do.they have found another way to save money,some states passed a law so you can take your on life.Time To Stop Talking And Start To Take Big Time ACTIONS NOW !!! I Have Aways Been Proud Of Our Country.What Country Let it’s own people SUFFER.CHANGE The DRUG SCHEDULE BACK.STOP INHUMANE TREATMENT.


Ok. For a start let’s fight back fight fire with fire.

There is no way we have the way to do a media campaign to offset the commercials and media spots which demonize or overlook us, but we have social media.
If the Mormon Tabernacle Choir can sing the Messiah with thousands of singers on video singing with them, we can upload video clips of ourselves… Something like “I am the face of pain. I am not a drug addict. I depend upon prescription pain medications to be a nurse, teacher, scientist…” You get the idea

We’d need to develop the message, go through uploads and pick some candidates then finish with all of our faces.

Then post it on, FB support group, organizations who represent those with chronic pain etc. and of start a social media campaign.

I am willing to collate and review videos or do menial tasks. All people would have to volunteer. Remember, it would have to be cheap but effective.

If we are millions strong…yet very tired, we still can repost a video.

I wouldn’t know where to start though.


A call to action is what we need and voices of chronic pain suffers be heard and demand it. Im so sick of being put in a category of drug attic, when all im doing is to have a life with pain i can cope with. Ive tried everything and opiods is all that helps at all. I know i will never be pain free but with a family that dont understand i would like for my kids to atleast be able to say dad can you do……… and once in awhile i could say i would love to. I will go anywhere and march on any property at anytime because i have nothing to lose because do to my back injury ive lost everything so please if there is anything i can do at all to get through to the people that dont suffer, i will do it and if anyone who is worse off than myself i will gladly do my best to help you get your heard. I just dont know what to do and without medication my kids suffer and no parent wants that. I wish there was a doctor out there that was dealing with chronic pain that could lead the way

Stephen S. Rodrigues, MD

I live and work everyday in this tragic issue. From my investigations this whole mess all was planted in 1968. A profit scheme was set in motion with the first knee replacement for pain. Now the roots are deeply embedded in the entire educational systems and governmental legalized with mandates. The 1% will lose billions easily gained off of your wounded and confused hides. The profits are so huge that no one wants to do the work to make the corrections. So you pain is fueling our economy.

The idea that men can find pain with technology, treat pain with manmade devices with the distorted believe that you will be as good as new — is the lie.

This lie is so deeply embedded in society that many cannot comprehend this sin against humanity. One lie leads to many many many more which have now reached a boiling point.

This is the sin in action:
The powerful have taken all aspects of PT away and they are only giving you pills and surgery. Both do nothing to renew your tissues and so you are enslaved in pain without the proper PT options.

The most common cause of pain is life and living.
The only location for this pain is in the soft tissues of the body/muscles.
The only way to restore these tissues back to wellness is with physical therapy.

These are all of the PT txmts options I’ve re-discovered from the archives of medicine which were hidden from your views. They all work to take the pain away:

All of the Hands-On PT (touchy-feely) which must apply energy into the soft and muscular tissues:
Self care with wellness, stretching and yoga etc.
Heat, hot soaks or other heat sources as in Infrared Lasers.
Human touch manual stimulation: Kinesiology and Manipulation. Spinal Range of Motion Therapy, Continuous Passive Therapy, Acupressure and Soft Tissue Release.
Intramuscular needle stimulation IMNS:
IMNS w thin needles: Ah-Shi Chinese Acupuncture, myofascial acupuncture, GunnIMS and the Dry Needling.
IMNS w hypodermic needling: Muscle Wet (with lidocaine) Hypodermic Intramuscular Stimulative Needling aka Travell Trigger Point Injections.

Interesting set of circumstances. They ALL must be placed back on the front lines of office based patient care. NO physical therapy, NO restoration, NO thing will happen and NO healing.

Kathy Copper

Thank You Terri Lewis,

We don’t exist. I have been following the Media mentions of the “Opiate Crisis”, along with the “Missing Americans” and “Healthcare” News. We are inconsistent with the Media False Narrative. We have been further marginalized by this last attack on all Healthcare. Most of the people I know with “Chronic Pain” either don’t know they have it, I was in denial about mine for Years. They are either too sick or too tired to speak up or do much of anything. When I tried to speak up, I realized we are dealing with “Fact Resistance.” We have to counter a long narrative of the “Drug War.” The Media has been playing on the fears, and anger of most Americans. They do not have a basic understanding of the Issue.

My Mother used to say I had a big mouth, I was one of those stupid people that thought we should speak up. when I did speak up I looked around and realized I was alone. I realized there was a False Narrative about Drug Addicts, White Trash Oxy Addicts, moochers, and other associated myths. I learned the hard way that anything I said or did to disprove the false narrative made me look look worse. I even felt bad for speaking up for some of the people I know. They are afraid to speak up. They have been shot down and ridiculed to much. I am seeing a dark Pattern in Healthcare. It only looks like Health Care. We are just inconvenient we get in the way of Profits. I have given up any hope fo improvement for anyone. Look at the Studies, Science and the Industry, it is no longer evidence based, even the “Science” has been undermined or ignored.

Mary Ellen

Finally! We need to partner with a nationally respected/feared/beloved change non-profit organization that was responsible for the Americans with Disabilities Act! That is ADAPT. Crying, writing letters, and waiting for good people to do the right thing has not worked. We can’t buy back time with our tears.
Adapt is a Non-violent direct action nation wide group of people living with disabilities that are not victims.
That means no whining. They are dedicated to making the entire disability community, including all of us with chronic pain, equal in all areas of life. Not pitied.
Read here and join- adapt.org


AMEN TO ALL THE ABOVE! And a special shot out to the phrase: “NOTHING ABOUT US WITHOUT US”!!!!! Aaaaamennn, amen, amen!

Thank you Terri!

stacia russell

How do I find information about studies in my area or consumer networks that are ligitimate? The Internet is full of commercialism…. it was a long time before I even came across this site. I want to be involved where it will make a difference.

Welcome to the table, Terri! We need to #GivePainAVoice for one reason alone: We know what it’s like, because we live with it. Everybody who hasn’t lived with pain, is simply guessing what it’s like for us.

So when those outsiders start guessing about us, they say some laughably stupid things. We need to start ridiculing the laughably stupid things that outsiders say about us, because otherwise, they will continue to believe that their wrong ideas are right.

Many of us got the wrong idea, somehow, that we should be ashamed of our limitations. That we should hide ourselves from the world. That because a painful chronic illness makes us do 30 percent less than we did yesterday, we should surrender the other 70 percent of our lives and give up on trying to live.

That’s simply a dumb idea. Let’s not throw all of life away, just because some of it doesn’t work any more. We have the same right to try, as everybody else.

Jean Proce

Very rousing article! I so agree with the theory of this message! Yet, the statement that we can do anything we want to do is just a little off base, isn’t it? If I could seriously do anything I wanted to do I most likely would never have looked up this site, I would be too busy doing all the things I want to do….and yet the reality is I can’t because of the limits of pain! Perhaps our advocacy groups could take a long look at this article, since it truly is about all the things they could either lead us in or do in our stead, when we can’t muster the energy and ability. This would also be a great list to pattern a letter from…changing the audience from us to those we want to hear us. A list of practical requests, since demands seems a little we’re holding them hostage…when in truth they are holding us and our futures hostage. Maybe counter demands, don’t hostage negotiators have those?! Seriously, this is great information, yet again aren’t the wrong people hearing it? Maybe some with pain do need the motivation to be more active advocating for themselves and doing little things to educate and effect change. Most of us have learned no one else will, so we best do it ourselves. But, isn’t this what an advocacy group is supposed to be about?! Isn’t this what is lacking from most? Isn’t it time for them also to reevaluate their emphasis and their efforts, to let the addiction rehab clinic ads go and get their funding elsewhere? Isn’t it about pain care, or the lack of? Isn’t it about working for positive change instead of just reacting to negative guidelines AFTER they are already being followed by those who care for us. We must find a better way to let our stories be told. We must find more people who are willing to help us who don’t live with pain yet understand the impacts it has! People who are starving don’t create their own movements and projects to help!! Dogs don’t advocate for themselves about being put down either!! Others who are compassionate, concerned, caring, knowledgeable, and ABLE to effect changes help them. Where are ours? Where are the people who can see the invisible, see the pain, see the devastating effects, see how senseless these changes have been? See how we need more research, more options, and not less…not taking medication away because they are confused about the recent increase in addiction, and have been told we are to blame! Why can’t our advocacy groups bring those kinds of people on board? Are there none out there? Or are there just none who can see through the efforts of those with an agenda other than helping, an agenda based on money and power? Yes, we do need to speak out, mobilize, make our grievances know, expose the untruths, all that this article says. But we so can’t do… Read more »


Someone please let me know what i can do to better support and get the word out about those of us that suffer with chronic pain. Im struggling fighting all the people that dont understand and are uneducated on this subject. I feel people suffering needs to desperetly be heard and it has to happen now before more take there own lives. Please help


One of the things that really makes me angry, are the people who fake it to get drugs and sell them on the street. There needs to be tougher laws for those people who make it so difficult to get the help for people who really need it. I’m tired of having major flair ups and end up in the ER and have them either treat me like a drug seeker or just plain refuse to help me by saying that because I’m in pain management they can’t help me. I have recently found out that if you go to the ER more than a couple times a year they put you on a list as a repeat customer. Another name for drug seeker. What are you supposed to do if the Doctors office is closed and you call the on call service at the Doctors office and they tell you to go to the ER. I have several serious illnesses. I was given 1 year to live 6 years ago. Illnesses don’t go away and for me they have gotten worse. I have also had 6 back surgeries that have left me in horrible life lasting pain. What are we supposed to do I need help from the consending health care system!!!!

Richard A. Lawhern, Ph.D.

Worthy sentiments, Terri. I can get behind many of them. But all are dependent upon a basic commitment: they require MONEY! Until the National Pain Foundation registers as a Non Profit Organization and can solicit and audit donations to fund its programs, I cannot take this organization or the National Pain Report seriously, regardless of its evident positive intent. Words are NOT ENOUGH!

Nice work Terri. Let me know if there’s anything I can do to help.

Maria Molaro

We can truly do anything that we want to do!!! Until the doctors run scared and the pharmacies so no, not for a week. Giving us a pep talk is inspiring, until it’s the day to refill a prescription for us regular pain patients. I’m all for advocy, if I could just get on a bus and parcipitate at such a rally.