Opinion: Why Aren’t We Good Spokespeople?

Opinion: Why Aren’t We Good Spokespeople?

By Holly Clowers, MD

Holly Clowers, MD

Holly Clowers, MD

Psoriatic arthritis can be a debilitating condition.  It can lead to painful complications such as neuropathy.  Its treatments can lead to complications such as shingles, which can leave a patient with continuing pain.  Ehlers-Danlos Syndrome is for most patients a painful condition that leads to spontaneous dislocations, early arthritis, and frequent migraines.  My husband and I have decades of experience between us in living with these conditions.

My husband and I are also physicians with 57 years experience working with patients between us.  We have a world of inside information from both sides of the aisle on the chronic pain issue.  Too many opioid scripts are written for conditions that don’t really warrant it, but not enough are written for conditions that do.  The result is some drugs don’t end up in the right hands, people are harmed, and people who are in pain are harmed by not being able to access care.  Quite obviously, the real world outcome of the current solution is that fewer and fewer physicians will even consider prescribing these medications.  A better solution is to use them more wisely, and agree that doing so will bring down the number of accidental deaths.

To lower this number, we could also assure that suicides don’t get counted as accidental overdose deaths (they do), that every autopsy where there is a trace of a substance is not counted as a drug death (they are), and that heroin and illicit drug deaths are not added to the total deaths due to prescription drugs to jack up the numbers (they are).  Right now, people who have lost access to effective care and choose to end their lives because of it are actually counted as people harmed by free access.  We need to be capable of having an honest conversation, rather than letting opportunists looking to build their substance abuse practices speak for us.  I feel for those who have lost family members to overdoses, and I feel for people who have fallen prey to addiction, but a lot more treatment options are available for addicts than for people in pain.  All drugs have side effects and all drugs kill people.  We have to decide how much collateral damage we are comfortable with.  In this situation, there’s going to be collateral damage on both sides, it’s just a matter of how balanced it is.  400,000 people die yearly from medical errors, and no one is advocating we never see a physician again because of that.  Have you ever heard “physicians don’t work, they kill people”?  That’s because this argument isn’t balanced.  Who has the money and the power?  There’s an elephant in the room, people.  A great big, absurd elephant.

Stop focusing on alternative pain treatment.  If mental and physical therapy, acupuncture, exercise, and meditation without opioids were good enough, we’d meditate our way through major surgeries, do pilates while giving birth, and run to the acupuncturist every time we had a kidney stone.  Let’s also stop pretending the pain some people feel every day isn’t as bad as the above examples and doesn’t deserve relief.

We could talk about what people can do in their homes to safeguard medication—that never comes up.  We can talk about how to protect the doctors who are writing responsibly—we don’t.  Instead, the runaway DEA budget is its own battering ram that just keeps barreling forward.  The discussion is “these meds don’t work,” when there is clear evidence that they do.  We could talk about how to protect pharmacists who are just doing their jobs, and patients who are following the rules, without treating them like criminals.  We need professionals who are not advocating complete abstinence to speak up.  We need to have the tough conversation before opioids are no longer prescribed, and we find out too late that people are still dying from overdose, no one can get their pain treated, and the cycle eventually reverses and continues and we make the same mistakes again.

My husband and I are great spokespeople for this cause and great references, but every time we contact politicians, legal groups, advocacy groups, patient groups, etc., mostly no one wants to hear what we have to say.  Why?  Let’s talk openly, honestly.  Let’s do it.  One more plea:  we need to hear from the large number of doctors who think people can be safely treated with these meds yet are completely silent while their patients are getting thrown under the bus.  We know you don’t want to get fired, we know you’re tired and your day is long, but we need you to speak up now.  If not for your patients, before it’s you or your family member; now is your chance to keep this from touching you personally.  The deck is already stacked, but taking action now might keep it from getting worse.

Editor’s Note: Holly was born in Arkansas, attended Mississippi State University undergraduate and University of Alabama School of Medicine in Birmingham, trained as a dermatologist at Mayo Clinic in Rochester, MN, and settled in Tennessee.   She had to give up practice due to Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, and other health problems.  She hopes to bring a unique voice to patient advocacy.   Her husband, a disabled pathologist, is also an advocate who suffers from psoriatic arthritis with severe spinal disease and neuropathy.

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Authored by: Holly Clowers, MD

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Thank you so much, Dr.Clowers, for adding your professional voice as a doctor to the opioid debate.

You say: “Stop focusing on alternative pain treatment.” It’s criminal that medical doctors are now suggesting treatments they condemned as useless not long ago. Those of us seeking relief through alternative methods were called gullible fools, and I’ve come to agree because none of those treatments helped me.

But now this label of “gullible fools” applies to the doctors recommending these same “useless” treatments. This stunning hypocrisy from the medical profession is not just unprofessional, but harms chronic pain patients who need effective, not just hyped, pain relief.

You point out that “more treatment options are available for addicts than for people in pain.” This is what makes some pain patients wish they were addicted instead of being in pain. If a person has either an addiction or chronic pain, it should be treated with effective methods.

You also point out the flaws in the numbers being so casually being tossed around by the anti-opioid zealots. They admitted to duplicate entries in their data, but a bigger problem is that they lump together numbers from ALL opioid deaths.

The various numbers I’ve seen quoted are 48,000 and 28,000. I rarely see the actual number of ~18,000 in media reporting because the larger numbers look more impressive.

47,055 is the number of lethal drug overdoses in 2014.
28,647 is the number of deaths that involved any opioid, including 10,574 deaths from heroin
18,893 is the remaining number of deaths due to prescription opioids

The numbers above are from a CDC publication Opioid Addiction 2016 Facts & Figures: https://www.asam.org/docs/default-source/advocacy/opioid-addiction-disease-facts-figures.pdf


Dr. Clowers, Thank you for this very insightful article and for restoring some of my faith in the medical community. I too am a chronic intractable pain sufferer for ten years now. I had my first spinal fusion after I was i volved in a MVA back in 2000. My second spinal fusion was in 2008 after I reinjured my back. Both surgeries failed, but the second one left me way worse off than before I had it. When I wasn’t the surgeons walking success story, he shoved me off onto pain management. Before he did that though, he made sure to try and make me feel as if I were lying, that I couldn’t possibky be in that much pain. I went thru YEARS of physical therapy, massage, chiro, accupuncture, epidurals, discographies, nerve blocks, facet injections, trigger point injections, steriod injections, TENS, water therapy, many OTC pills, tried just about all of the NSAIDS and they tore my stomach up, tried every non opiod pain reliever. Nothing helped to bring my severe pain down to a tolerable level and I had horrible side effects. The multiple debilitating conditions I suffer from include : DDD, fibromyalgia, severe stenosis, three herniated discs, cervical disc degeneration, complex regional pain syndrome, RSD, osteoarthritis of my hips and spine, pancreatitis,cholecystitis, migraines, radiculopathy, neuropathy, and because of this hell/torture I am being forced to endure by the DEA, CDC and the government, I suffer from anxiety and depression. I have tried everything MY BODY could take and my wallet could afford, well I really couldn’t afford any of it as I am still in debt trying to pay off medical bills and on perm, disability, single mom that has an ex who is a deadbeat dad, it’s extremely difficult to even keep a roof over our heads and food for my kid. Anyway, I have been with the same doctor for nearly five years now. Prior to him I was with a pain doctor who truly helped me, who was extremely thorough, who went thru every therapy with me and was the one to finally put me on opiod therapy. I get so angry at the BS the government spews out to the public regarding opiods, that for the most part its doctors first line of defense to just write script after script when that couldn’t be anymore false. Society believes this BS and those who are not existing in severe pain daily also think it’s the doctors to blame, it sure couldn’t be the DEA’s fault for not being able to stop the heroin from coming into the country right? It took me a long time to accept I will be in severe pain the rest of my life and as I age (I am 50) my conditions will continue to worsen. It also took me a long time to accept that I’ll probably need to be on opiods the rest of my life if I want a QUALITY OF LIFE. When we finally… Read more »

Kathy Cooper’s spot-on with her main point. The media make money on sensationalism. They truly do not care who they harm, as long as their ratings go up.

Our First Amendment right to a free press, is NOT a right to be told by these ruthless and irresponsible media corporations, whatever lie they are paid to spread this week. The actual right that’s written in the First Amendment, said the late Justice Scalia, is the right to do exactly what Kathy just did and I am doing: Press freedom means we each are free to put the truth out in writing and show it to people, no matter who wants us not to utter it.

A great many bad things are said about the “Citizens United” case. President Obama slandered the Justices in his first State of the Union Address and the media broadcast the insult for us all to hear. But the truth of the matter is this: The media’s lobbyists induced Congress to pass a law, that would have made it illegal for you or me to criticize a politician online, within 60 days of an election…unless we owned a corporation that published a daily or weekly newspaper. And the Supreme Court threw that bad law out.

Notice how many newspapers have gone out of business, since then?

Without their monopoly, they are nothing.

That’s precisely why it’s important to continue using the rights we have, under law. Any right we stop using, can be turned into a privilege, and then taken away.

Just as pain treatment, according to Hillary Clinton, Bernie Sanders, and Jeb Bush, is a privilege…one that politicians may tighten at any time.

Kathy Cooper

Thank You Doctor Flowers, In my State they just sentenced one of the few real Pain Physicians left to prison for murder. They sensationalized the number of pills, the deaths of Chronic Pain patients. His crime was essential prescribing Methadone to people who could not afford the more expensive pain medications. They also charged him with Medicaid fraud, apparently the prescriptions were paid for by Medicaid. The sensationalism of the whole case and the use of these numbers out of context to inflame the public was disturbing. This Doctor was one of the few Pain Physicians in the area, many had stopped prescribing and turned patients away. People in pain came from hundreds of mile to see him, because there were no Pain management Physicians left. I feel he saved my life, he was the first Doctor too actually look at my MRIs and show me what caused the pain after a spine surgery. No physician previously had even acknowledged that my Surgery might not have stopped the pain. I could not afford the Medication he prescribed nor could I return. I was dropped from my Insurance while I was in limbo, being told it was all in my head. This is a pattern I am seeing repeated among many pain patients. The postponement of a diagnosis or Medical explanation leaves us in limbo. I had wanted to die I was in so much pain, until this Pain Doctor explained it to me. The arrest of a compassionate and overwhelmed Doctor puts fear into the rest of them. Here they have virtually shut down most prescribing, and even discussion of chronic pain. Fortunately I have on of the few Pain Physicians left, but at the same time always waiting for the shoe to drop. The regulations and practices he has had to go through to keep practicing are staggering. I don’t know what any of us will do if he stops practicing. I have been flowing the Pain and drug related Articles in the Commercial Media, trying ot figure out what is really going on. Nearly every mention of Opiates has tied Prescription Pain Medications to the “Heroin Epidemic”. They use sensationalize out of context numbers, to justify their position. The sensationalist slant left Pain Patients completely out of the narrative. There are some very well funded groups that profit by this confusion, and these corporate Lobbyists and lawyers wrote some of the Health Care Laws, to protect their interests. These Policies were not designed to protect Patients, any patients, they were to protect these Industries and profit by the Health care laws. These decisions were not based on any “Evidence Based” or Scientific information, only the need to profit. The more “confusion” they create the better it is for them. The Media does not report the number of “Medial Errors” every year. While the false narrative is that a Failed back surgery is a “jack pot” that people can sue. The other false narrative is that people with spine… Read more »

Hello, I run a support group for people with chronic pancreatitis as well as an up and coming non profit to help those struggling financially to be able to see their Dr or get their medications. I think we ALL need to work together but I have heard that there seems to be a power struggle in that happening. We need to pool our resources and develop a commercial, maybe calling it the voices of chronic pain and include these doctors who support us. Get this going throughout the country not just social media. I am more than willing to work on this project, are any of you? This is not about who is in power and gets a pat on the back, it is about saving all of our lives and allowing us to have some semblance of a “normal” life. I have already ask my group of over 1300 to participate so I am already working on getting others involved with this and I ask all of you to join us in making this happen. I envision each person (representing a chronic pain condition) giving a short testimony on what they and others with the same condition go through while all of the diseases that need opiates scroll down the screen. We could even put some background music with it. We have children and elderly suffering as well and their stories should be included. I can tell you that CP is one of the most painful things one can have according to renowned pancreatic specialist Dr David Whitcomb of the U of PA but each and every one of us suffering in pain for whatever reason need to stand up and be loud and proud letting the entire country know the abuse and inhumane treatment we are all facing. I think that the lack of media coverage on patients who are being denied proper care is disgusting and we NEED to bring attention to it as no one else is going to. I chose my Doctor because he is who I put my trust in and these bureaucrats need to back off and let him do his job! The government ,the insurance company or any other entity should NEVER be allowed to over ride our doctor! What they are doing will only serve to cause more suicides and people turning to street drugs for relief!

Richard Oberg M.D.

Dave is absolutely correct about this. I also view the failures from our ‘youth oriented’ society where health/looks trump (no pun intended) physical realities many people are going to experience - they just don’t know it yet. We’re the uncomfortable outcasts that don’t fit this mold - ever notice how people will take a quick glance and then look away from someone in a wheelchair or with special needs? Speaking of, just try to get consistent help in an airport these days when both your feet are three sizes too large and merely standing is like being on broken glass (non-safety type I might add) from severe peripheral neuropathy due to long standing inflammatory changes. Sorry, they’re making money again and don’t have time for such nonsense so I mostly stay at home. Traveling’s tuff enough as it is and most of them would rather not be bothered. It’d be great if we could get a lot more healthy folks like Dave willing to speak out on this because until it happens nothing’s going to change. Dave’s an extreme outlier for our cause. The healthy people are mostly busy practicing medicine (and complaining about it), being government representatives (while not representing), reporting the news (about government poisoning people in Flint or more serious Academy Award slights), and stuff like that. C’mon now, it takes a lot of work keeping up with those addicts people - yeah, mostly the same ones who’ve always been there. Face it, we’re just not that glamorous.


Donna- I share the bitterness and frustration-and interestingly enough i do not suffer from any pain. But i am frustrated and bitter about the poor pain care people receive. My friends and relatives have suffered from poor pain care and I have been with people in pain to their doctors office dozens of times and witnessed either uncaring treatment, disrespectful treatment or ineffective treatment. There was one instance where i believed a person with pain from pad received very good pain care- 1 instance out of hundreds of people i have spoken with about pain.However there have been some times where though the care wasnt very good th eperson was able to overcome their pain. And so my perception about pain care is vastly different and irreconciliable with those views of the medical profession. Medicine is not trying to reach a middle ground with people in pain. If you go to the web pages of medical organizations- they purposely exclude people in pain from being on their board. They really dont have open houses for people in pain or other forums where they will listen to the concerns of people in pain. When the ACA was passed in 2010 they called for a report on the barriers in pain care- in 2011 the IOM created the report. It was only too plain to see the report didnt integrate the concerns of people in pain. And the National Pain Strategy-once again didnt welcome the concerns of people in pain. As i see it professionals strongly disidentify with people in pain. They dont wish to be perceived as being like people in pain- they call people in pain “catastrophizers”, they make fun of people in pain at conventions, they disresepect their views in their offices(which to me is most remarkable given the precious little doctors know about pain) And again i have witnessed this too many times and read enough articles and books to say to those who claim otherwise are sorely mistaken. The fact that even Congress has stated pain is under researched, underdiagnosed and undertreated is pretty telling in itself. But the health care industry doesnt want to admit or deal with the sorry state of affairs in pain care. Theyre a proud and stubborn lot.They dont believe people in pain should act in ways other then overconforming to the passive care models they subscribe too. So, i cant see how a middle ground is obtainable without a dramatic change in the rights of people in pain. And so I agree with you this is an issue of rights-thats why i wrote the American Pain Care Rights Act in 2010- for i knew then what i know now- the health care industry will remain unregenerate towards people in pain. Unless people in pain demand humane and pain care- then poor, ineffective disrespectful pain care will continue indefinitely. I think those wish to believe that medicine will do right by people in pain are ignoring the many facts that prove otherwise.… Read more »


Dave-for the most part, I get what you are trying to say. And I understand the frustration. When I had to call over 30 doctors to find a new primary care doctor to accept me (I am under the care of a pain specialist, but that didn’t matter-I took pain med and was turned down immediately) I have come to make generalizations about doctors. I’ve had more bad experiences, than good. I am very bitter. But I did read something from a doctor’s perspective that brought a little light to the situation. Doctors are not taught how to deal with pain or pain patients. At least in the chronic cases. We, as patients, have a tendency to overwhelm doctors with numerous symptoms and problems. We have to learn that it will be a process and take time. We may have to work on building a relationship first, lest we put the doctor in shut-down mode as he doesn’t know where to start. After all, for a lot of us, we’ve committed hours, days, months to researching ourselves. A doctor as hundreds, thousands of patients.
Doctors are on the hook as well. They need to allow enough time to do a thorough assessment. To listen to us and believe us. To advocate for his profession.
This is over-simplifying, but I’m hoping I made sense here.
If doctors and patients can meet in the middle and be a team, then together maybe we could be heard.
I agree with so much you say, I understand the anger and frustration. I think it is part of our grieving process.
I hope I have not offended. I’m still working through all my bitterness, hoping to get past it, and eventually put my energy towards working for our rights as human beings.
Take care.


Jean- of course, in this blog I am not writing for a specific person. To me this is an opportunity for some psychic bloodletting and catharsis about pain care. And as I have gotten 3 pieces of legislation in NYS requiring education in pain care- and 27 legislators in NYS signed on- I have some ability to influence lawmakers on pain care. In addition, some of the pain specialists have taken some of my ideas and used it in their own writings- such as the idea of a Manhattan Project for chronic pain. And yeas- I have over 200 signatures on my American Pain Rights Act- which was endorsed by some pain advocacy organizations. So again, I can write in a way that can be influential. But having said that, I dont usually like to write or express myself in a way to move others. Its a little manipulative. And yes I did generalize about doctors- you could say I overgeneralize and stereotype. No doubt, there are some doctors who do speak up about pain care. Though, I think the evidence is pretty clear- those that speak up are few and far between. And I question whether or not when some of them speak up it isn’t just promoting their own occupational strategies. So I use critical media studies, critical medical anthropology and critical discourse analysis when considering what doctors and government say and do when it comes to pain care. You are free to interpret others writings as you see fit. We cant control what others think, say and feel about us. And the opportunity for dialogue or agonistic democracy is limited in blogs and other venues with respect to pain care. I, at least, make it clear all stakeholders-and not just advocacy organizations and interest groups should be heard on pain care. Every voice should count- that is in my letter to Senator Collins and the others who sought to relegate individuals in pain to moral and civil vagabondage. Were not going to agree on many issues in pain care. Im usually more critical then some others when it comes to pain care- and I can speak about probabilism, eliminativism, evidentialism, principlism, essentialism, physicialism, foundationalism, alethic anti-realism, mereological supervenience, Bradford Hill criteria, critical path analysis, gaslighting in research, defeasible modus ponens- just as well as I can talk about Orexin A, COMT, sirtuins, triptolides, triterpenes, mor, dor, kor, oxidized ATP, cobroxin, biomagnetic pair, noesitherapy, llt, Manaka acupuncture, ESWT, frequency specific microcurrent, etc. So I see problems in pain care as involving many different things. Im not going to express myself differently for the sake of others being uncomfortable with my thoughts, beliefs or style of expression.-and wouldn’t ask someone to express themselves for my sake. I believe in free speech that is uninhibited, robust, and wide- open. I guess that comes from reading Mouffe, Midgley and Meillasoux and a basomedial amygdala used to an anaplerotic diet. Im a hopeless case Jean- you mine as well give up on… Read more »

Very well said and right on! This actually applies to many, but not most, posts. I fear that we can alienate potential allies when we, through legitimate frustration, slip into overgeneralizations and stereotyping. Thanks Jean, for the reminder!

Holly Clowers, MD

Many thanks for all the great comments and support and thanks to the healthcare providers who are supporting patients in pain! My best wishes to everyone just trying to get through the day…

Ms. Cleaveland, thank you for the information about the EDS NE/MA Support Group and thanks for your efforts as well!

Jean Price

Dave…I get so much more out of your comments, especially when you abstain from the generalizations, like lumping all doctors as problems and not wanting a doctor to speak for you! There is much truth in what you say, but I often find it hard to dissect from the haranguing, especially when I’m hurting and don’t want to have more frustration than I already have. Please keep writing your comments, I value much of what you have brought to light in many of these articles….but at the risk of sounding like a mother chastising her child, please leave out the stereotyping and the over the top simplifying that generalizations bring. It dishonors those who really could speak for us and those who care, and it dishonors yourself, too. I think it’s wonderful you have taken up the unfairness and the problems of people with chronic pain. I don’t want your input to be lost in this kind of rhetoric though! Thanks, guy…I seriously hope you hear the intention of my posting. I think you are a straight shooter and I applaud that, just don’t confuse your targets. And please keep commenting!


I dont want a doctor speaking on my behalf- Im capable of that. Doctors are free to speak up about pain care- but despite over 40 years of documentation of poor pain care and inadequate treatment and research for every pain condition- they have been anything but good spokespersons for the good of people in pain. Here it is 2016- and one of the first known treatments for pain- trepanation- was done 8000 years ago. And in December the Deputy Assistant Secretary of Health- Ms Jones at the IPRCC calls the National Pain Strategy- ” a beginning”. So doctors have been too far removed from the good of people in pain-they care much more for their profession and their standing in their medical societies. We know doctors in medical school are indoctrinated and socialized into conventionalism and to be go along to get along drones.
I don’t agree with Dr Clowers opinion on alternative treatments-and how typical of allopathic doctor to condemn without investigation treatments they know little about. And if the quality of care is based on the degree to which providers integrate and master all available treatments- then we know why pain care is so poor- because of reductionistic and narrow minded and self serving docs conflating the little they know, do and care about pain- as being sufficient.
Doctors have blamed people in pain for their pain, they blame the dea and insurers for poor pain care- they have fought against having education in pain care and continue to do so. It was Nora Volkow in the Pain Consortium said that veterinarians receive 75 hours of education in pain care and doctors receive 7. They are not good judges in their own defense. They When the FDA did a report on opioid REMS- less then 20% of doctors bothered to obtain free education in prescribing opioids.
Doctors are too far removed from the good of pain. Their deliberate indifferentism has added to the suffering of millions of Americans and their failure to give infants in the NICU who often receive 14 painful procedures or more without analgesia- is proof enough to me they are too numb to irresponsible to trust as speaking on behalf of the good of people in pain.
Doctors heal your morals- take courses in sensitivity training and consciousness raising- for now you are such stuff as Stannley Milgram and Phillip Zimbardo studies are made of.

Thank you so much for this article. Well written with truth. I am a chronic pain patient and advocate who is the founder of Chronic Pain Rights. An organization created to help chronic pain patients fight for their HUMAN RIGHTS to use opiates for pain relief. We have been targeted and are receiving INHUMANE treatment. And it’s got to STOP.

There is all kinds of help out there for addicts, but we chronic pain patients get NO HELP, yet we are treated as addicts. They are taking away our access to opiates the one medicine that works for us. AND is our LAST RESORT.

We have been down the road of physical therapy, steroid and cortisone injections, and many surgeries, some good, some FAILED. The failed surgeries put us in even MORE pain.

I have coped with Charcot Marie Tooth disease since I was 5 years old. CMT causes many other health problems and lots of chronic pain from all of the problems. I was also HIT by a DRUNK DRIVER in April 2015. This caused many herniated discs in my neck and back. On top of the health problems I already had such as peripheral neuropathy, scoliosis, degenerative disc disease, osteoarthritis, severe muscle spasms, and fibrous dysplasia.

Without opiate pain medication I am bedridden. Opiates give me life, they relieve some of my chronic pain, enough to function and take care of my own personal hygiene, my family, and occasionally allow me to have some fun. Never once have I abused my pain medication. I don’t get “high” from opiates, they give me pain relief because I take them as prescribed.

We need compassionate care, not this inhumane treatment we are receiving. Our doctors know our bodies, BUT because of the DEA, CDC, and FDA, threatening our doctors and pharmacists licenses they are scared to treat us properly. They should NEVER have to FEAR losing their license for treating us with compassion and proper treatment.

Some pain management doctors are forcing this spinal stimulator and injections on many of us. We have been down these roads and for some of us, these options do NOT work. This is WHY opiates are our LAST RESORT because they DO WORK, they DO give us pain relief and for many they give us our lives back.

And since health insurance companies are covering less and less care, MILLIONS of us cannot AFFORD the high COPAYS for more tests, surgeries, hospital stays, etc… We are being run into DEBT.

Opiates is our LAST RESORT, stop taking them away from those of us who CAN benefit from the use of opiates.


Thank you, Holly, for writing this and trying to advocate. I am so sorry you have EDS and had to give up your practice. I am also sorry for your husband. That is by far the worst thing. We have to live with these awful conditions that bring us horrible pain and abandon careers we worked hard to achieve and loved. Then the final insult is to have treatments affording us some semblance of quality living denied because of other people’s abuse. I have severe PTSD from being denied pain medication for 6 months and treated like a terrible person for even wanting my pain relieved. It is unconscionable and inhumane. I met with my Congressman’s district director and it went well. I plan to meet with my state and federal senators next. The most effective lobbying and advocacy campaigns are those that put the personal stories front and center. My pain management doctor who literally saved my life tried to advocate to our state’s policymakers and it was a train wreck. I told him next time bring the patients so they can tell their stories. Thanks again and keep fighting! You certainly aren’t alone.

Dear Dr. Clowers, Thank you so much for discussing this topic, with differentiation and transparency in mind. Below is my own letter that I sent to the Feds, hoping that if others did the same, we might actually get somewhere with teaching the important art of discernment to physicians today. As Co-Head of the Ehlers-Danlos NE/MA Support Group, I represent the voices of over 1,000 individuals, most of whose suffering is unwarranted, as physicians know very little about our disease. Even worse, the Nosology does not describe far reaching nature and the severity of the illness, nor the comorbid diagnoses that come with a defect in collagen/connective tissue. We are currently conducting a survey Re: Patient Care issues in Ehlers-Danlos, along with Nosology concerns, confusion and Psychiatric misdiagnoses, along with a very high rate of intractable pain. I fear that if we cannot remedy this lack of differentiation, we are going to lose many more EDS sufferers in the near future. This is a tragedy unfolding beyond the pale. To The Powers That Be, In a society that prides itself on freedom and caring for its citizens, there is an epidemic in the heart of medicine today. It isn’t opiate “overuse,” but rather, a sudden dearth of common sense, discernment, logic, and empathy. Medicines once known to be effective for patients in chronic, intractable non-cancer pain are now being wrongfully targeted as “all bad.” Solving the addiction crisis (not just opiates), is not a “one-size-fits-all” “solution;” it requires discernment, monitoring, and a physician’s caring, mentoring, w/ tools that he/she can employ. Special interest groups, whose goals promote ablation procedures, while profiling EVERYONE who is taking an opiate as an “addict” requiring “rehabilitation services,” seem responsible for the media’s cooked “numbers” of deaths and overblown, misleading prescription rates. Two years after opiates were targeted/prescriptions were limited, heroin is now abused by those who don’t have chronic physical pain. Why is that the fault of those who suffer? For a subset of non-cancer patients, especially those w/ heritable and progressive conditions, pain is intractable, progressive- more debilitating than cancer pain. In some non-cancer diseases, people are suffering equal, if not worse, prognoses, while navigating a disturbing national “media scare” trend to take away any and all effective pain medications for EVERYONE. Since when is cancer the only disease that causes pain “worthy” of palliative treatment? Greed, power, patient profiling/stigmatization, has caused the loss of the ability to differentiate between street drug addiction and chronic pain medicine dependence. The willingness to allow chronically ill to suffer and die in pain supplants all common sense. More people still die annually because of over the counter abuse and street drugs than of opiate prescriptions! Yes, there is an epidemic of heroin abuse. This often begins when someone becomes addicted AFTER a short term injury has resolved. Folks most likely to turn to street drugs are not “using” for physical pain, but rather, to soothe an inner oppression. Many are devoid of hope, home, and connection.… Read more »

Fruit Loop

Doctors think they understand chronic pain because they study and treat it. That’s like saying they understand how it feels to be dead because they work in a funeral home.

Fruit Loop

Thank you for this well-written piece. You nailed all my personal feelings and what I wish the rest of the world knew. May you find relief and joy.


I am glad to see all the comments here. I would like to see many more. If physicians will not/cannot speak out, and pain sufferers feel that what they say is ignored, what can we accomplish? I will be honest and admit I feel it is hopeless. The media is not interested and politicians hitch themselves to what’s popular. What do we even have to bargain with? Not until the critical rise in alcoholism, heroine use, arrests of senior citizens for buying street drugs and suicides occur, will there even be a conversation with policy makers. Not until abject failure of THIS war on drugs happens. Until then, we are invisible people, along with our illnesses.

Richard Oberg M.D.

You’re very welcome and I agree 100% Jean - am in your corner with virtually identical situations and you stated what I feel about all this also. I’m very much a realist which often gets me pegged a pessimist and couldn’t be further from the truth. I’ve seen things as bleak as this looks hit an unexpected turn when you persevere but it’ll be a collective effort as most good outcomes are. It’s also why we can’t let our valid different points of view somehow divide us - most of my best ideas came from listening to someone else who either didn’t know what they had or were unwilling to go forward with it…….. I don’t mind going forward and can speak to any audience. You’re correct - that’s the next step I’m waiting to take also.

Jean Price

Thanks, Dr. Oberg…for your insight into the issue of adding more layers of frustration by participating in support organizations….I image this is a common problem for those of us with chronic pain. I really would like to see some responses from the Pain Foundation regarding the points we bring up in these comments, and what they are doing to impact those areas. Or what they need from us…although I’m unclear why any valid commentary from a person with chronic pain would be considered too risky by them, as Dr. Goodwin stated. The larger risk seems to be our silence. I have emailed the Foundation over two different things I think would be helpful and asked a question about a Facebook post…but have not heard back from them. Even publishing a list of similar organizations might be good for them to do, to give us additional information and support. I feel fortunate that at the present, I do have a physician I respect…yet he is restricted not by my pain needs as much as the regulations, and the hoops I jump through are the same as others. I wonder what would happen if he retired or moved. It is a120 mile round trip which I couldn’t make myself, but luckily my husband is retired. He was diagnosed with colon cancer two years ago and it gave me a look into what our lives would be like if we were both limited in our functioning! Like some of you have reported!! We all seem to live in tenuous situations, at best…and some are already living with nightmare caregiver issues. When I see an article about the senate having presentations addressing abuse, I wonder if they have had sessions focused SOLELY on chronic pain. AND IF THEY KNOW THE TRUE SCOPE OF THE PROBLEM, and how they are negatively affecting us! We hear each other…but who else hears us. I think we arrived at “critical mass” some time ago…and extreme effort is needed to remedy the backward steps being taken in pain care. We owe it to ourselves to see this through wherever and whenever we can…and to hold the organizations who support us to that task. I can’t even visit my grandchildren at present, so my ability to go out and campaign is limited. But I have other things I could do, given some direction. I feel like my comments here won’t change what needs to be changed! Once we realize that we aren’t alone, and feel more empowered…where do we go next? It would be a shame if Dr. clowers’ article was only seen by people with pain! There is an audience who needs this information even more than we do! Are they getting it?

Richard Oberg M.D.

Jean - your comment is great as are so many others. I also understand your frustration with groups that must evolve and become part of a solution, however imperfect.

I remember my initial attraction to online groups long ago where I could (for a time at least) get some validation about what my disease was, why it affected me the way it did, and how I wasn’t alone. After maybe a month or so it became problematic and I realized I was going to have a lifelong illness, I wanted to continue to practice, and I wasn’t going to find answers there absorbing everyone’s pain/struggles and actually making mine worse.

So I quit doing it and managed my daily struggles as best worked for me as we all have to do. No number of clinical rotations in med school is as experiential as actually living with a bad disease nor will they ever be. Ultimately, much of the responsibility will lie (however unfairly) on us and now it’s on us to be heard and is what I think we’re trying to do here.

It does no good to throw those of us under the bus willing to speak out and take things to a higher positive level. Being confrontational doesn’t mean being negative - but you can be confrontational IN a negative way and I know where that path leads (nowhere good for us). I’ve gotten reams of seemingly impossible positive change done in three decades which were win-win for everyone - and I had to quickly learn that to lead you deal with continual criticism over and over even from your presumed allies and you either pick yourself back up or do what exactly? Accept the status quo? Not my style - and I’ll continue to fight for us whenever I can manage to get out of bed.

My treating internist had a longer vested career in our hospital system than me and was completely undermined by an administrative decision he had NO control over. Ground zero physicians who quietly and appropriately care for patients are not in the most glamorous political position (except to their patients) and doesn’t make valid that we’re some kings in a kingdom - mine wasn’t and most others I know aren’t.

And I have the highest respect for those of us who haven’t lost their way or given up. Were I not disabled (and disconnected from my body politic) I wouldn’t be able to respond here like I do either. Medicine’s never been the unified voice its political class and the media trumpet. I haven’t exactly heard any outpouring of support from non-medical healthy people many who seem to think we’re getting what we deserve. Finally, around 2/3 of physicians are employees who get told what to do and how high to jump; otherwise, you can practice as you like!

Lisa Matelski

Thank you SO MUCH for saying what so many of us have been thinking - and far too few of us have also been saying - for some time now. I was yelling, “YEEESSS!!!”, and pumping my fist in the air through parts of your article.
It’s interesting that your article is listed as an “opinion” piece. Every single thing you wrote was fact.

I started to write a lengthy comment, but it’s just not necessary. You pretty much covered everything that’s on my mind and in my heart in your article, Holly. Thank you so much!



I have used pain medication to goto graduate school earning my masters degree all the while using ultra high dose opioid pain treatment for Adhesive Arachnoiditis. I was confident in my abilities to achieve success with access to pain treatment. I even planned to go back to work and not need Social Security. These will soon be more failed goals when I do loose access to opioids. I wrote letters to senators, wrote to local representatives ect. and no one will represent the other side of the spectrum of aduse, untreated pain.

I’m willing to do what ever I can to have quality of life. For me it’s only possible with opioid pain treatment.

FIVE SUICIDES from one Face Book chronic pain group in a short period of time.

Jeremy Goodwin, MS, MD

That was a great article. And I have offered to speak up and to do so for this publication ( but the editor felt that my points would be too risky) and I am trying to get one of the reporters here to freelance for the NYT’s. This may not even BD posted due to my criticism above but sadly it is true.

The references to CAM etc. annoy me as well. I do work with those skilled in such areas but they are often best used integratively with our western approaches, with or without opioids. They rarely substitute but improve. Yet insurance iften refuses coverage.

And yes, there are indeed many more positive and responsible aspects on which our focus might best lie: safe prescribing and getting rid of blanket statements such as ‘ no benzodiazepines with opioids’ or ‘ you may choose between low dose opioids or medical marijuana.

I am so frustrated also at the medical biards’ unwarranted and unregulated power. Mark Ibsen, MD was screwed as have others been. I want to draw public attention to that. It is disgraceful. It deprives, not protects the public.

Jean Price

Your article brings up valid points…especially about the skewed statistics. And there can be little doubt how your life has been impacted by pain, and how proficient an advocate you are. Yet, are we the only ones seeing this?? Because we already know the problems—we live them! I’d like to see the Foundation flood doctors and our legislature and the CDC with copies of this and all the other good testimonies of people in pain who are struggling against the system…because the system and the general mindset isn’t working. What about news articles too! This is the first article I’ve read from the Pain Foundation where there aren’t several ads for drug abuse…including how to find doctors to treat that! I don’t see any list of doctors who are giving appropriate pain care, though. So even within our ranks, there is the tendency to bring up abuse every time we talk about pain. This surely isn’t helping. A friend of mine (without chronic pain) brought up these ads when she looked at an article I had sent her. Her exact words were,”They’re sabotaging the people in pain when they do that!” I’m not sure we can win against this pervasive issue of abuse when we are the only ones who are speaking up. You’re so right about needing physicians to speak up….but will they? They are also in a bad spot …being policed by the opioid Natzis of our government!! Sometimes I feel all I have gained from signing up with the Pain Foundation is MORE pain…the pain of seeing so many stories of needless suffering, the pain of feeling powerless to impact that for myself and others, the pain of the hopelessness I hear when people are being treated abusively, and the pain of lives limited not by their condition but by their treatment…or lack of. I wish I had the answer…but I don’t know what more we can do to get others who are not in pain to take up this fight, and I fear that’s what it will take. When there is so much money involved, and such a concentration on the sensationalism of “epidemics” and “crisis” and “the horrors of addiction”…how can our “horrors” of merely trying to live a more productive, comfortable life with pain be heard? I applaud the time and energy you used…while in pain, I’m sure, to write this article. I also applaud all those with chronic pain who comment, realizing we all are doing this while we are physically hurting. Most of us are destined to have pain the rest of our lives, barring a miracle. We’ve accepted that. But suffering is more a part of batting your head against a brick wall, struggling against uncontrollable goals. Our goal for pain control which includes the use of opioids as needed is a worthy goal…yet I’m not at all sure it’s within our control! And that’s scary, and sad!


Mark- as Donna and Bob- and many orthers realize the larger society isnt hearing the voice of people in pain. Medicine has hogged the debate and is quick to disqualify the voice of anyone and everyone outside of medicine in order to maintain their hegemony and dictatorship. Your profession considers the opinion of nonprofessionals as folklore to be dismissed without consideration. Your profession needs to be overhauled if it is to serve society and individuals well- for it is based on arrogance, motivated cognition, autopoesis and “closed world” philosophy. Its time for your profession to grow up and stop acting like prima donnas.
So medicine is to blame for condemning the voice of people in pain and waxing gross to their concerns and needs
Now, without a vision you timidly call for the most modest of changes- my how unconvincing.
Its physicians who have made it us vs them. Why not get your arrogant and inconsiderate discursive imperialism ridden colleagues and profession to get over yourselves and do what is right by requiring every medical organization to have nonprofessional perople in pain on their boards. Write to the ACGME, the Secretary of Health, the AAPM, the APS- call for substantive change in this regard. Dont just talk the talk- walk the walk- you can believe i do. Just tthis week i wrote to the president of the AMA to be more communitarian and not to condemn the participation of the public in the design of medicine - for that would be the height of ignorance and incivility.

Dee Green

Sorry for some of the grammar in comment, was in a hurry 😊

Dee Green

Thank you so much for speaking out- there are many more of us who work in the healthcare field speaking up and trying to advocate for the 100 million people in the US who suffer and are being ignored. Media likes sensationalism and hasn’t been interested in covering the Antiopioid lobbyists true agenda and attempts to paint them as having only the patients care in mind (forget the fact that they own a chain of addiction tx centers or work as professional witnesses for lawsuits against big Pharma- at the same time taking advantage of the grieving families of suicide victims who were addicts by promising them that if all opioids were illegal, then “Johnny” would still be alive-even though he used heroin, which is already illegal) The damage that these groups are doing to the medical profession, as a whole-including themselves, by causing an even more pronounced “chilling affect” than already exists can be reversed if we bring the entire chronic pain community together (pts, advocates and treating physicians) together and speak loudly and clearly. Together, we can finally force the government and health community to see that, unless and until science develops a cure or proven treatment for chronic pain treatment, we can’t eliminate a medication that works for many patients. Again, thank you for sharing your experience and voice to the subject 😊 We need more physicians to speak out and take back they’re professional credibility when it comes to compassionate medical care.

Dr. Flowers,
Thank you for your thoughtful essay. I am forwarding it to my “pain doctor” who actually specializes in substance abuse but I go to him because most doctors cannot prescribe Suboxone for pain management as it is primarily used for substance abusers. I hope others, likewise, will share your kind and sensitive essay with their own doctors.
The issue is NOT to get rid of doctors! It’s to help mobilize them in the pain management debate.
Dr. Dan Carpenter
(Retired secondary to pain issues) Psychologist

Dear Doc:

While I’d like to thank you for speaking out for people in pain. I have a serious disagreement with you on one statement in particular. You said, ” All drugs have side effects and all drugs kill people.” This is patently not true for one drug that many people have been using over the past 25 years for pain. That “drug” is cannabis. Cannabis has been shown to be effective for up to 80% of people that utilize it for pain, especially fibromyalgia. A recent poll by NPR indicates that it is the single most effective pain reliever for fibromyalgia, according to patient reports. I can assure you those reports are true. And cannabis has never killed anyone. Why don’t more doctors recommend cannabis for their patients, when we know it works, and works better than most pharmaceuticals? Yes, cannabis can have some mild side effects-most notably euphoria. When you live with chronic pain, a little euphoria is not a detrimental side effect. Please give credit where it is due.

Dear Doctor Clowers-I co-founded the #GivePainAVoice campaign, because so many dear friends who have a disease condition that is complicated by chronic pain, feel stigmatized and fear to speak out. When one expects to be bullied and shouted down…when a range of uninformed, ignorant, or malicious media personalities…everyone from Hillary Clinton to Bernie Sanders to Jeb Bush attempts to speak for us but says things that are 180 degrees opposite the truth, people are discouraged from discussing truths that they know from personal experience.

Thank you, doctor, for lending your informed voice to the discussion.


Thank you for putting forth information that chronic pain patients know from a physician perspective (and fellow pain sufferer as well). How do we effect change if we are not even heard? If they won’t listen to a physician, why would they listen to the average person? And just who is “they”?
When I, or my family, see a doctor lately, there is no physical assessment or comprehensive history on present or past illnesses. But the doctor checks the “comprehensive visit” box every time. Is this insurance fraud? I don’t think physicians are exorbitantly paid, but in these cases they are being untruthful. Maybe if we started reporting this it would get everyone’s attention. Money is a great motivator. Because frankly, I don’t think conversation is going to work.

Mark Ibsen MD

Well said.
This is an issue that all physicians need support in.
I suggested a title;
“Got Pain? See Us!”

We could be the ones to stand up FOR patients
This is not
Us Versus Them


Ms Clowers- doctors arent educated to be visionaries or spokespeople for their patients for if they were they would not have neglected pain care for so many years. Doctors are taught to be far removed from their patients- as bioethicist Eric Cassells indicated. And so when people in pain tried to be heard- the doctor has long since been innured to their suffering from pain. And as medicine is quasi governmental- as politicians defer to them when their re health issues- they hog the debate. They like to shut out people in pain as unqualified to speak intelligently about their pain and suffering. Nothing stopping a doctor or medical organization from saying no to government when government wants to dump social issues in their lap. Nothing stops a doctor from taking a course on pain- but we know they like to miss that hour lecture on pain care. Nothing stopping a doctor from taking a sensitivity training course. And nothing stopping a doctor for seeing the world of treatments is much bigger then what they were taught in med school and what their boards are interested in. And i say to you condemntation without investigation is the height of ignorance- you have assumed the conclusion about alternative treatments- and my guess is you dont know the differentce between manaka acupuncture or Tang or Lippe from Leroux. So i see doctors- like JP Ioannidis suffer from an epidemic of opinions- without research backing theiropinions up.And my anaplerotic diet has made my dorsolateral prefrontal cortex and basomedial amygdala methylated enough to deal with the typical run of the mill ignorant doctor.
Doctors are not part of the solution- we should overhaul their profession in every way- or rid ourselves of them- they have become too costly, too careless and uncaring and too indifferent to the needs of the rest of society. They have breached the social contract- and their indifferentism to suffering and their rough beast pain care needs to go.
But youve gotten a taste of your own medicine when trying to advocate for pain.