‘First, Do No Harm’ Doesn’t Mean ‘No Rx Opioids’

By Dr. Lynn Webster, PNN Columnist

Many physicians say their ethical duty is to "First, do no harm." This principle is often mentioned in the context of prescribing opioids. Some people even believe that prescribing opioids to treat people in pain violates the Hippocratic Oath, because, they say, a doctor’s first obligation is not to do anything that could make things worse for a patient.

However, that is a flawed oversimplification of the "First, do no harm" directive.

As N.S. Gill writes in Thoughtco, many people believe that “First, do no harm” is a quotation from the Hippocratic Oath. They are mistaken. More importantly, the creed does not say that doctors must never provide a clinical intervention that might trigger some degree of harm. If physicians had to live by such a code of ethics, they would be unable to offer almost any medical treatment, since they all carry some risk of harm.

As the Harvard Health Blog points out, ensuring that you always "do no harm" would mean no one would ever have lifesaving surgery. Doctors wouldn’t be able to order CT scans, MRIs, mammograms, biopsies or other tests that can turn up false positives; draw blood for fear of bruising or provide vaccines that may cause side effects. Even aspirin is a potentially dangerous treatment for some people. To avoid risk altogether, doctors would have to limit themselves to Band-aids and soothing words.

The Double Effect Philosophy 

“First, do no harm” isn’t about standing by helplessly while someone suffers needlessly. It is an ideal that is better explained by the principles embedded in the philosophy of the Double Effect. 

According to the Stanford Encyclopedia of Philosophy, the Double Effect doctrine means that an action is acceptable if harm occurs in the course of trying to make a positive difference. An intent to do good or help must be the underlying motive. However, the intention to do good by itself is insufficient. The possible good from the action must sufficiently outweigh the potential for harm. 

Often, the Double Effect guideline is used to explain why physicians prescribe opioids even knowing they can pose risk to patients. Doctors prescribe opioids -- sometimes at very high doses -- with the intent to relieve pain (which is “to do good”), because there are few other options available or affordable, and the risk of harm is manageable for most patients. 

This trade-off in decision-making is true for all medications and interventions, not just for opioids. Opioids are not evil agents, despite their checkered reputation among some laypeople, physicians and lawmakers. 

Not Using Opioids Can Causer Harm

Most patients nearing the end of their lives, their families and clinicians who treat terminally ill patients place a priority on a peaceful, pain-free death. Opioids are frequently necessary to fulfill that desire, despite their potential to hasten death. 

Providing opioids to ease end-of-life suffering passes the Double Effect test, but it is still controversial. Furthermore, end-of-life-care is only one area for which some experts question the use of opioids. Some people believe that opioids should never be prescribed because of the harm they may cause, regardless of their potential benefits to patients. 

But not using opioids can also cause harm. In an American Journal of Law and Medicine scholarly essay this month, Kate Nicholson and Deborah Hillman argue that there is a special duty to a subgroup of patients who are already receiving opioids: doctors must not harm them with forced tapering.  

There is also harm, Nicholson and Hillman say, in not treating pain in patients. Based on a Human Rights Watch study, they believe that doctors who deny patients the care they need "in an effort to protect their licenses or stay under the radar of law enforcement" may be violating their patients' human rights. 

Nicholson and Hillman point out that "First, do not harm" has a different meaning for policymakers than for physicians. Policymakers have a responsibility to ensure that society isn't harmed by opioids. However, the authors contend that policymakers have an even greater duty to "do no harm" by respecting the doctor/patient relationship when considering the societal impact of opioid prescribing.  

The patient's need for pain medication, they believe, should be prioritized over society's need for protection against the harm that misused or diverted opioids can cause. 

Our Ethical Responsibility to Patients 

As physicians, we are trained to heal. We become healthcare professionals because we want to provide compassionate care to the sick, the frail, and the dying. We swear an oath to use our best judgment to evaluate the risks and potential benefits in all interventions. Intending to do good, even knowing that adverse effects can occur with every intervention, is our ethical responsibility. 

A mischaracterization of the phrase “First, do no harm” must not prevent providers from caring for people, or prevent policymakers from allowing physicians to treat their patients. That treatment must include providing patients with medication that can adequately provide pain relief with acceptable risk.  

The physician's ethos must always be based on what is best for the patient when all factors are considered -- not on arbitrary guidelines that impose a one-size-fits-all philosophy.  

This column has been revised and updated from a version that appeared in the Salt Lake Tribune on December 10, 2017.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD

How Public Health Failed to Stop Coronavirus Pandemic

By Roger Chriss, PNN Columnist

The pandemic is not going well in the United States, except possibly for the coronavirus. The U.S. is seeing record levels of new confirmed cases, and deaths are back up to almost 1,000 daily. Projections based on positivity rates and hospitalization levels suggest a long summer of illness and death, followed by even more in the autumn.

Several websites are using COVID-19 data to compile visual “dashboards” of what’s happening in states and counties around the nation.

Covid Act Now classifies most of the South as having an “active or imminent outbreak,” while the Covid Exit Strategy marks the entire South and much of the West as having “uncontrolled spread.”

Axios summarizes the nation’s response to COVID-19 with the headline “We blew it.”

“America spent the spring building a bridge to August, spending trillions and shutting down major parts of society. The expanse was to be a bent coronavirus curve, and the other side some semblance of normal, where kids would go to school and their parents to work,” wrote co-authors Dan Primack and Nicholas Johnson.

“The bottom line: We blew it, building a pier instead.”

COVID EXit STRATEGY

The bleak situation is clearly visible in county-level maps of the country. The Harvard Global Health Institute’s Covid dashboard marks almost all of Florida red. Most counties in the South are also red, and only a handful of counties around the nation are green.

The STAT News preparedness dashboard shows that many counties, particularly in the South and West, are completely unprepared to handle a surge of Covid-19 cases.

Despite all this, there is no nationally coordinated response. As Prevent Pandemics notes in a new report, the U.S. has no standards for collecting and reporting local or national data on COVID-19. As a result, the information is “inconsistent, incomplete and inaccessible in most locations.”

“Particularly in the absence of a clear national vision, strategy, leadership, or organization, it is crucial to establish standardized, timely, accurate, interlinked, comparable, and informative dashboards for every state and county in the US. This is required to improving our control of the virus and maximizing our chance to get our children to school in the fall, ourselves back to work, our economy restarted, and to prevent tens of thousands of deaths,” the report concludes.

The Trump administration has handed over management of Covid-19 to states, as if the virus confines itself within state borders or mutates when crossing them. The White House and some governors have even blamed the current surge on increased testing, though this is mathematically impossible, according to STAT News.

Cities and states are also competing against each other for scarce medical resources like N95 masks and drugs like remdesivir, and disagreeing about public health measures like face coverings and quarantining visitors from hard-hit areas.

Waiting for a Vaccine

The pandemic response in the US seems to be to soldier through until a vaccine becomes available. There is rapid progress with vaccine development, including promising results in Phase I trials from Moderna, Oxford-AstraZeneca, and CanSino. Phase III trials are getting underway, meaning that data should be available by year’s end. If all goes extremely well, large-scale deployment of one or more vaccines could be underway by summer, 2021.

But the coronavirus is well underway now. The Covid Tracking Project shows testing, cases and hospitalizations surging upward week after week, with deaths expected to follow.

The virus is spreading fast enough that the U.S. could reach herd immunity levels before widespread deployment of a vaccine. This means hundreds of millions of Americans exposed. Even if the rate of serious illness is only 5% and of death is 0.5%, that is still millions of people affected.

Johns Hopkins reports the U.S. has the third highest death rate in the world, behind only the United Kingdom and Chile.

The pandemic will keep going until we stop it. As journalist Debora Mackenzie notes in the book, Covid-19: The Pandemic That Never Should Have Happened: “Science didn’t actually fail us. The ability of governments to act on it, together, did.”

The U.S. has indeed failed and will continue to fail until it develops a coherent public health strategy.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research. 

Honoring Black Pioneers in Medicine

By Dr. Lynn Webster, PNN Columnist

There have been countless Black pioneers in the medical profession, but few of us know their names or the contributions they made. This column acknowledges the impact these men and women have had on healthcare, despite the inequalities they faced in pursuing their vocations.

DR. JAMES MCCUNE SMITH

In 1837, James McCune Smith graduated from the University of Glasgow in Scotland, becoming the first African American to earn a medical degree.

Dr. Smith had been denied access to an American medical school, so he was forced to seek his medical career overseas. According to the University of Glasgow website, Smith was a noted abolitionist, educator, scholar and "one of the foremost intellectuals in 19th century America of any race."

Besides graduating at the top of his class, Smith was also the first Black to run a pharmacy in the United States.

In 1847, David Jones Peck became the first African American student to graduate from a U.S. medical school, receiving his degree from Rush Medical College in Chicago. 

Rebecca Lee Crumpler was the first Black woman to receive a degree from a medical school in America. That was in 1863.

Alexander Augusta was the first Black to be commissioned as a medical officer in the Union army during the Civil War. He was the "surgeon in charge" (in other words, the director) of the Contraband Hospital in Washington, DC.

Biddy Mason was a former slave not formally trained in medicine, but she helped deliver hundreds of babies as a midwife in Los Angeles in the 1860’s. Mason was also an entrepreneur and philanthropist, who donated generously to charity and helped establish the first black church in the city.

In 1879, Mary Mahoney was the first Black woman to be awarded a nursing degree. She is also credited as one of the first women in Boston to vote after the 19th Amendment was ratified.

Daniel Williams was one of the first physicians of any color to perform a successful open-heart surgery. In 1893, he opened Provident Hospital in Chicago, the first interracial and Black-owned hospital.

BIDDY MASON

In 1895, Robert Boyd co-founded the National Medical Association. This is the oldest and largest organization representing Black physicians and healthcare professionals in the United States. Dr. Boyd served as its first president.

Vivien Thomas, the grandson of a slave, worked as a laboratory assistant rather than as a doctor. Yet, in the 1940s, he created a surgical technique to correct the congenital heart malformation that causes blue baby syndrome. His white associate, Dr. Alfred Blalock, received the credit.

Charles R. Drew established large-scale blood banks at the beginning of World War II and saved thousands of lives. He also created the first bloodmobiles. The Charles R. Drew University of Medicine in Los Angeles is named after him. Over 80 percent of its students are from communities of color.

William Hinton, who received his medical degree from Harvard in 1912, was the first Black physician to teach at Harvard Medical School. He developed the Hinton test to diagnose syphilis and wrote Syphilis and Its Treatment, the first medical textbook published by a Black physician.

DR. RICHARD PAYNE

The world of doctors who specialize in pain management is small, because it is a relatively new specialty. That means only a limited number of Black physicians have focused on treating patients with pain in the modern era. Richard Payne was among those pain specialists.

In 2006, Payne was Professor Emeritus of Medicine and Divinity at Duke University Divinity School and held the John B. Francis Chair at the Center for Practical Bioethics. An internationally recognized expert in palliative care, Payne devoted his career to making palliative care standard practice for people with late-stage illness. He was the first African American to become president of the American Pain Society.

In 2019, Patrice Harris became the first African-American woman to be elected president of the American Medical Association. Dr. Harris has been chair of the AMA’s Opioid Task Force since its inception in 2014.

You may have heard some of these names before; others, you may be hearing for the first time. In any case, these men and women saved the lives of thousands of Americans at a time when racial discrimination was a legal, acceptable part of U.S. culture.

Skin Color Still Matters

We may tell ourselves that skin color no longer matters. We may take for granted the fact that the Black pioneers in healthcare laid the foundation for people of all races to be able to make their own contributions to the medical world. But recent history does not support that perspective.

In 2017, a white woman walked into a clinic in Ontario, Canada and demanded that a white doctor be found to treat her sick son. She was escorted out of the building by security and, presumably, continued her search for that elusive white doctor. The "Karen" video of the incident went viral.

Just this month in STAT News, Dr. Ruth Shim explained that she is leaving organized psychiatry because of its structural racism. She wrote about experiencing "countless microaggressions" as a Black leader in the psychiatric community. She also expressed her belief that the American Psychiatric Association seems to have unwritten policies to deliberately "impede progress toward achieving racial equity."

In another STAT News article last January, Uché Blackstock wrote about why Black doctors are leaving their jobs as faculty members at academic medical centers. Blackstock felt compelled to resign from her job because she "could no longer stand the lack of mentorship, promotion denial, and work environments embedded in racism and sexism." It was a difficult decision for her to make, since there were few Black role models among the faculty. However, she found the workplace toxic, oppressive and racist.

"If academic medical centers and their leaders cannot adequately support Black students and promote Black faculty," Dr. Blackstock wrote, "then they will continue to leave."

We've come a long way since 1837, when James McCune Smith became the first African American doctor. Jim Crow laws have been abolished and schools — in theory, anyway — have been integrated. Recently, we’ve seen a huge wave of support for the Black Lives Matter movement.

Still, only 5 percent of physicians in the United States are Black, despite the fact that the population includes more than double that number of African Americans. That needs to change, but it is important to understand that parity representation in the medical profession alone would be insufficient. To honor the contributions of Black pioneers in medicine, we need to recognize their contributions to science and society, regardless of skin color.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD

The High Cost of California's Death Certificate Project

By Dr. Denise Phan, Guest Columnist

Even as the Covid-19 pandemic occupies the nation’s attention, most of my work as a primary care doctor still revolves around other chronic diseases.  

Every day, people are still giving birth, still getting sick, still dying from terminal diseases, still getting hurt and still having pain. Yet more and more, physicians’ hands are tied when it comes to prescribing opiate medication to reduce their patients’ pain and suffering, especially now that surgeries, physical therapy and injections are discouraged due to social distancing guidelines.

Last year, a patient came to me with a letter from her previous doctor explaining that he is no longer able to prescribe any opiates. The local pain specialists he recommended in his letter were either not taking new patients on opiates or would not prescribe the dosage of oxycodone needed to control her pain.

Several months ago, another patient came in complaining that his pain specialist had cut his dosage down so quickly that he now resorts to street heroin to control the pain and withdrawal.

Yet another patient asked me a few months ago to stop the chemotherapy for his lung cancer and put him in hospice care so he can get adequate pain control.

And just last month, a patient told me she can no longer bear to attend her online fibromyalgia support group because five people in the group had killed themselves in the past few years.

Recently, a frustrated nurse in the oncology/orthopedic ward asked me, “What is it with you doctors? Are you all going to let people scream themselves to death from pain? "

DR. DENISE PHAN

A cardiologist friend of mine remarked, “Ten years ago you could get sued for not prescribing pain meds to patients, now you can get sued just for writing one."

Project Targets ‘Inappropriate’ Prescribing

One of the causes for this sad state of affairs in California is the state medical board’s “Death Certificate Project.” The board investigated the overdose deaths of 450 patients who may have received “inappropriate” opioid prescriptions and sent warning letters to their physicians. Disciplinary action was taken against dozens of them.

The Death Certificate Project sounds like a well-meaning idea, but in practice it has decimated the field of pain management and brought tremendous suffering to patients living with real legitimate pain.

The most egregious of the project's many faults is the decision to pull death certificates from 2012-2013, and then use the state’s prescription drug database to identify "overprescribers." The deaths occurred years before the medical board adopted tougher guidelines on the prescribing of opiates in 2015 and the CDC released its opioid guideline in 2016. 

By this irrational act, the project targeted hundreds of primary care doctors and pain management specialists who were caring for the high-risk populations of chronic pain patients, and were following previous California guidelines to treat pain aggressively and with opiate medications if necessary.  

To date, the board has filed accusations of negligent prescribing against 66 physicians. Forty-eight of them have faced discipline such as license surrender, public reprimands and probation. Some were forced into early retirement. Eighteen doctors are still awaiting hearings or trials. The vast majority of them are responsible physicians who have had no other complaints lodged against them. 

Throughout the Covid-19 pandemic, standards of care and public policies have been rapidly evolving, even flip-flopping from week to week, some causing and some preventing thousands of deaths along the way. It is incredibly irrational to retroactively penalize doctors for following the previous standards of care during a epidemic. Yet this is precisely what the Death Certificate Project is doing by focusing on overdoses in 2012-2013, when the opioid epidemic had not even been recognized or publicized by the medical board itself. 

Imagine going to work every day on the frontline of an epidemic, knowing that the state or federal government can change their policies at any time; and that they can go back and prosecute you for the deaths that resulted from their previous policies.  As we watched our colleagues in the field falling like dominoes one by one, can you blame the doctors for running scared?

The primary result of the Death Certificate Project has been the effective removal of dozens of frontline doctors amid a decades-long shortage of primary care physicians and on the eve of a pandemic. The secondary result of this program is the refusal of terrorized remaining physicians to prescribe any pain medications at all or to drastically reduced the dosages. This has caused a marked increase in pain, suffering and suicide rates in the legitimate pain and addiction patient populations, as well as the subsequent rise in the use of street opioids and thus opioid deaths overall.

The data on California and national overdose deaths shows that prescription opioid overdoses have declined since 2014. Overall drug deaths spiked up sharply in 2017-2018 – but this was mainly due to street heroin and illicit fentanyl. This shows how sadly unnecessary and harmful the project is.

Beside the human and societal costs listed above, this project is costing California millions of dollars annually in funding for administrative, consulting and legal fees. This is not counting the immeasurable cost to the medical system from the loss of physician resources during the biggest pandemic of our time. 

When a medication or treatment does not work as intended and causes many harmful side effects, we need to stop it. If you are a resident of California, please join me in a letter writing campaign to end this irrational, unnecessary, harmful and costly Death Certificate Project at the Action Network website

Dr. Denise Phan is an Internal Medicine physician in Los Angeles. She works in private practice in the San Fernando Valley and is on staff at Valley Presbyterian Hospital. Dr. Phan is active in the annual missions of the mobile health units of the Social Assistance Program for Vietnam and the International Humanitarian Mission. 

New Podcast Discusses Pain and Politics

By Dr. Lynn Webster, PNN Columnist

Not long ago, I was invited to support the Center For Effective Regulatory Policy & Safe Access (CERPSA). The nonprofit was recently founded by Stephen Ziegler, PhD.

CERPSA’s goal is to reduce the suffering that pain patients experience when their access to prescription medication is limited. I felt excited to join CERPSA’s Board of Directors and be a part of the activities the Center would undertake in pursuit of improving the lives of people with pain, including its “Pain Politics” podcast.  

There is probably no topic that has been more politicized and affects more people than pain. Producer and commentator Dr. Ziegler is a man with a mission. Each podcast episode tells stories about how politics informs -- or interferes with -- pain relief.

Dr. Ziegler defines politics as “who gets what, when and how.” Politics are often associated with government actors, but the term can more broadly include how a pharmacy chain implements policies on filling prescriptions, or how an insurance company imposes dose limits of medication for a patient following surgery.

Dr. Ziegler is an advocate for people in pain. A Purdue University professor emeritus, he has also worked as a lawyer, police officer, detective, DEA agent, and humorist. I don't know how he puts these experiences together, but I'm grateful that he is willing and able to leverage all of his skills and knowledge in a remarkable way to produce entertaining and informative podcasts.

There is a large potential audience for the podcast, because pain cuts across all demographics and does not discriminate. The general public will find the podcasts enlightening and timely. The politically charged topics Dr. Ziegler discusses with his guests relate either directly or indirectly to people in pain.

An example of someone who may be interested in Pain Politics would be a stay-at-home mom who suffers from chronic, long-term pain stemming from an automobile accident. She may feel isolated and be struggling with insurance companies and healthcare providers in an effort to find relief.

A veteran who faces stigma for the pain medication he needs to treat injuries received during a tour of duty would be another example, as would an out-of-work school bus driver whose health insurance has disappeared due to the pandemic.

The first Pain Politics episode -- Time for People in Pain to Make Noise -- is an overview of the podcast’s purpose, and how politics play an enormous role in shaping pain treatment, drug policy and human suffering.

In the second episode, Dr. Ziegler tells the Centers for Disease Control and Prevention to "get its head out of its app." This is a theme that will resonate with people who have been struggling with the CDC’s 2016 opioid guideline. Dr. Ziegler pulls no punches as he describes how the CDC has designed a data system that excludes the diagnosis of pain. He believes this, along with other frustrating CDC policies, was politically inspired.

Future episodes of Pain Politics will involve inequality and racism in pain, economics in medicine and pain, universal healthcare, how the DEA and other law enforcement agencies may overstep their roles in prosecuting doctors, the CDC's loss of ethical guardrails, national pain meetings that are politically-driven and not helpful to patients, and the American Medical Association’s recent letter to the CDC asking the agency to rewrite the opioid guideline. Dr. Ziegler will invite guests to appear on his podcasts as he covers these and other areas.

I hope you'll tune in via Apple Podcasts, Google Podcasts, or your favorite way to listen. You'll enjoy Dr. Ziegler's style, and benefit from the information he and his guests provide. I’m pleased to support his efforts.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD

The CDC, Opioids and Cancer Pain

By Roger Chriss, PNN Columnist

In 2016, the Centers for Disease Control and Prevention issued its controversial opioid prescribing guideline. Insurers, states and other federal agencies soon followed with mandatory policies and regulations to reduce the use of opioid pain medication. All this was supposed to exclude cancer-related pain care, but in practice that’s not what happened.

Dr. Judith Paice, director of the Cancer Pain Program at Northwestern University’s Feinberg School of Medicine, told the National Cancer Institute in 2018 that the opioid crisis “has enhanced fear — fear of addiction in particular” among both patients and doctors.

“Many primary care doctors no longer prescribe opioids. Oncologists are still prescribing these medications, but in many cases they’re somewhat anxious about doing so. That has led some patients to have trouble even obtaining a prescription for pain medication,” Paice said.

In 2019, the Cancer Action Network said there has been “a significant increase in cancer patients and survivors being unable to access their opioid prescriptions.” One out of four said a pharmacy had refused to fill their opioid prescription and nearly a third reported their insurance refused to pay for their opioid medication.

That same year, CDC issued a long-awaited clarification noting the “misapplication” of the guideline to patients it was never intended for, including “patients with pain associated with cancer.”  

Long Term Use of Opioids Uncommon

Cancer pain management in the U.S. has been severely impacted by the CDC guideline, even though rates of long-term or “persistent” opioid use are relatively low and stable:

• A major review of over 100,000 military veterans who survived cancer found that only 8.3% were persistent opioid users. Less than 3% showed signs of opioid abuse or dependence.

• A study of older women with breast cancer who were prescribed opioids found that only 2.8% were persistent opioid users.  

• A study of 276 patients with head or neck cancer found that only 20 used opioids long-term – a rate of 7.2 percent.

• And a study of nearly 23,500 women with early-stage breast cancer who had a mastectomy or mastectomy found that 18% of them were using opioids 90 to 180 days after surgery, while 9% were still filling opioid prescriptions 181 to 365 days later.

While any sign of opioid abuse or addiction is concerning, these studies show that long-term use of opioid medication is relatively uncommon among cancer survivors. The American Cancer Society says opioids are “often a necessary part of a pain relief plan for cancer patients” and “can be safely prescribed and used” for cancer pain.

Cancer patients and their doctors have been successfully managing opioid risks long before the CDC guideline or associated state laws and regulations. Perhaps it is time for lawmakers, regulators, insurers and pharmacies to learn from the cancer community rather than getting in the way of clinical best practices.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research. 

A Painful Privilege: Your Right to Protest

By Mia Maysack, PNN Columnist

I used to think I maintained a pretty solid grasp on the concept of being hurt. But being confronted by prejudice and oppression has broadened my horizons regarding what else pain can and really does mean.  

Recently PNN published a column by Dr. Lynn Webster that highlighted an interesting point regarding pain sufferers and our experiences with prejudice in the healthcare system. Not that the Black Lives Matter movement is about us, but there is much we can learn from it. For example, how protesting in numbers gets the sort of attention that could actually drive real change.  

The fact is pain patients are often mistreated, but the discrimination minority patients face is deeper and far greater.  This isn't intended to lessen or take away from anyone's experience, but to keep things in proper perspective -- which we’re in need of now more than ever.

After attending a Headache on the Hill lobbying event in early February, I self-quarantined for months due to my health and in consideration for the health of others. But when George Floyd died, it was a last straw that drove me out despite the potential for consequences.  

It's understandable that not everyone is able to venture out in the ways that I have, and I'm grateful to have done this work to the extent that my ailments allow. But a simple fact remains at the bottom of any civil rights moverment:  there is always something that can be done. It is simply a matter of following through on doing it.  

Traveling to a place like Washington D.C. to lobby for better migraine care or even just to the state capitol in my own city for a BLM protest takes just about everything I've got out of me. I held my fists up for so long, I still cannot lift my arms. But the work has to be done by somebody.

So instead of complaining and contributing to the very stigma we attempt to escape, why don’t we show up and support each other in ways that we can?  

Being immunocompromised was mentioned at a recent protest I attended. Someone stood up to speak on behalf of another person who couldn't be there. I respected that. It was a way for that person's voice to still be heard regardless of the fact they weren't there to speak. It was a beautiful example of how we're still able to contribute meaningfully despite our limitations. 

The same is true for any cause. There are always options, such as donating to those you can trust your dollars with, contacting your elected representatives, making a call, sending a letter or signing a petition. At the very least, aim to recognize and release any privilege or ego.   

You don't need to have a different shade of skin to ask for justice.  At a recent protest, a black woman spoke so much wisdom. One of the things she said was, “Women are the most oppressed among us all.”

We need to recognize that when any of us is held back or down in any way, it impacts us all. When someone's life or rights are threatened, it's only a matter of time before the same thing could be done to you or someone you care about.  

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

A Pained Life: The Language Barrier

By Carol Levy, PNN Columnist

Many years ago, I was in Brazil. I only spoke “pigeon” Portuguese. I walked into a diner, looked at a menu and saw something that looked good.

The counterman came over. I thought I said, “I would like the egg sandwich.” But I must have said something bizarre, because he walked away, twirling his finger by his ear and said, “Ella es loco.” She's crazy.

“No, no. Yo soy Americano,” I said. I am American.

Suddenly all eleven customers in the diner crowded around me asking, “Voce quiero que?” What do you want?

They figured it out and ordered for me. We continued to “talk” using hand signals and some of my “Portuguese.”

That memory reminds me of an episode of the TV show “Scrubs” in which a doctor asks his patient, “What level is your pain?”

The patient makes a face, mouth turned down, eyes almost crossed, forehead scrunched up. The doctor looks at a pain scale chart, the one that has faces going from “I’m okay” to “My pain is horrid.” The man's expression matches the face that shows he’s really hurting. “Ah. Your pain is severe,” the doctor says.

In both instances, the language gap is breached.

Things would be so much easier for us if this was how it worked between doctors and patients; having a communal experience in understanding our pain.

So many different pain scales are out there, all essentially the same: 0 = no pain and 10 = the worst pain imaginable.

I think adjectives express it better than numbers or faces, but using words like stabbing, aching, pulling and torture may actually harm us. “Torture” to me means horrendous pain, but to a doctor it may sound like exaggeration or hysteria. To me, “twinge” means painful, but to a doctor it may be pain that is not that bad and can be dismissed.

My recent brain implant made my pain much worse. I have never been good about talking about my pain. I rarely mention it, the level or how it feels. My doctors know what it is, they know from my history the effect it has had on my life. They know I am housebound for 80% of the time in an effort not to make the pain worse.

I called my neurosurgeon and used words he has never heard me speak, “I can’t take it anymore. It is almost unbearable. Please, take it out.”

Despite the pandemic and the ban on elective surgery, he scheduled the implant removal surgery within two weeks of our call. He understood me.

Probably no other doctor would have. My pain scale is not 0 to 10. Ten is the lightning, searing, knife-like pain I got from trigeminal neuralgia. Absent that, which thankfully I no longer have, nothing can or will ever reach 10.

My pain doesn’t slide. If I don’t use my eyes, which is what triggers my pain, I can be at 0. But once I start using them, I can go from 0 to 10 in the span of a few minutes. There is no ratcheting up little by little. If I don’t stop using my eyes, I will be in trouble. The pain will be out of control.

In my 42 years of living with this pain, at no time did a doctor ask me to explain how my pain works. They ask, “What kind of pain is it? How does it feel?” and so on, but never, “Can you let me know how you rate your pain so we will be talking the same language?”

How we communicate our levels of pain is often the decisive factor in the treatments and medications offered, dosages and the kind of opioid prescribed.

But if we don’t speak the same language, how can we understand each other? How can the proffered treatments or doses be what we need?

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.”

Playing With Fire: Should I Have Cancer Surgery?

By Cynthia Toussaint, PNN Columnist

As a woman with high impact pain for 38 years, I was stunned last July to receive a triple-negative breast cancer diagnosis. Seriously, God, how much more can I endure? I felt the tumor for a year before being checked because, with Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities, I didn’t think cancer treatment was an option.

It took me half a year before plunging into the impossible – and I started chemotherapy in January. With triple-negative cancer (the worst prognosis), the only prospect of living includes chemo. If I was responsive to the drugs, I believed I had a shot -- if pain didn’t destroy me first.

I’d done my shopping and found an oncologist willing to follow my integrative doctor’s advice for the best outcome with fewest side-effects. That meant lower and slower dosing, no Neulasta (a wicked drug that keeps your immune cells robust at the cost of intense bone pain), infusion breaks, supplements to ward off neuropathy, and acupuncture before each infusion.

I was also diligent about my healthy, cancer-fighting life style choices – a plant-based diet, daily intensive exercise, regular mindfulness meditation, removal of toxic people and excellent sleep hygiene.   

It worked! My oncologist’s dream goal of 18 infusions is one away from being in the books (most people stop at twelve) and I can’t stop smiling as my follow-up imaging is crystal clear.

Despite every western oncologist chiding me along the way for doing my chemo “less effectively” with complementary integrative therapies, I’ve had a clinical complete response. This is the hope of everyone with triple-negative.

Conversely, the only person I’ve met with this rare sub-set of breast cancer relied solely on western medicine – and her cancer has already metastasized to her brain. 

Hardest Decision

CYNTHIA TOUSSAINT

Now my oncologists insist on doing a “minor” surgery to sample tissue from the “tumor bed” and previously effected lymph nodes. If the tissue confirms a pathological complete response, as everyone expects, I’ll have a 90% plus chance of survival for the next 5-10 years. If they find any leftover cancer cells that will embed and begin to grow, we’ll continue treatment.

I can feel those of you with CRPS grimacing. Yes, of course, I want to avoid surgery at all cost, but this is my life, and the hardest decision I’ve ever had to make.

My track record with CRPS and surgery stinks to high hell. As a young woman, I was given an unnecessary LEEP procedure for cervical dysplasia, which I’ve since learned usually fixes itself. As a result of that minor surgery and cauterization, my CRPS spread, and subsequently I was unable to have a baby – which is one of the great tragedies of my life.

When I was 40, I was diagnosed for the first time with breast cancer and told that without surgery, chemotherapy and radiation, I had just a few months to live. I was terrified, but didn’t trust western medicine anymore.

After researching my diagnosis, ductal carcinoma in situ (DCIS), and learning that these calcifications in the milk duct almost never become invasive, I chose to “watch and wait.” Even when my mom broke down, crying and begging, “Please, Cynthia, I just want them to take the cancer out of you!” -- I didn’t budge for fear of a CRPS blow up. The calcifications never grew and to this day I warn women about the over care of DCIS.

About a decade ago, a physical therapist wanted to try to straighten my CRPS-contracted right arm. The therapy seemed far too risky, and I only relented when she promised to work exclusively on my head, neck and back. But she cheated and yanked, breaking my right arm. I was at a level ten pain again. It took a year to get an x-ray and correct diagnosis because I was labeled a “catastrophizing” patient.

The orthopedic surgeon told me that without elbow surgery I’d never use my right arm again. In the end, I didn’t trust the medical professionals who broke my arm to “fix” it. Instead, I got into my beloved YMCA swimming pool, did mirror therapy and strengthening exercises in the surrounding area – and my arm slowly regained near-full function.

Fortunately, I’ve forever had the gut instinct to pass on multiple recommendations for spinal cord stimulators and intra-thecal pumps, knowing the surgeries would do far more harm than good.

So here I am again, having to decide on surgery or not. But this time the stakes are much higher.

With the exception of one surgeon I know who understands CRPS because he’s triggered it with breast surgeries, every western doctor is consistent. They’re horrified by the prospect of me not doing the standard of care surgery to confirm or rule out a complete response. When the surgeon heard my plight, he responded with, “Cynthia, this surgery could very well destroy your life.” Damn right.

In my research to glean wisdom for this impossible decision, I’ve come upon two recent, small studies. They support the protocol of post-chemo, minimally-invasive biopsy or “watch and wait” as an effective substitute for surgery to confirm a complete response. This may be the future for treating triple-negative cancer. But in 2020, taking this unproven route would leave me with the terrible anxiety of not knowing. Worse yet, I could suffer a quick recurrence.

What fire do I play with this go around? Do I potentially reignite my CRPS or my cancer embers? All I can do is go with my gut and heart, and call in the good karma chips from the universe I’m certainly owed.

Can anyone thread the CRPS-cancer needle? I guess I’m going to find out.                              

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has had Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities for nearly four decades. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

White Privilege and People in Pain

By Dr. Lynn Webster, PNN Columnist

I am a beneficiary of white privilege. That doesn't mean I was born into money. On the contrary, I grew up in a poor, uneducated family in a rural community. I felt the world looked down on my family because of our socio-economic circumstances.

As a child, I feared I would never escape poverty or its stigma. The system seemed to favor those with money and education. Yet I was able to climb out of poverty because of a supportive family.

In retrospect, I believe the opportunities that opened up to me were due to more than family support. Although I had good grades in college, my acceptance to medical school may have been due, in part, to where I grew up.

The medical school to which I applied hoped to increase the number of family physicians willing to set up practices in rural communities. Their strategy was to choose students who had grown up in rural areas, assuming they would be likely to return to those communities to practice medicine.

I was never aware of a similar strategy for enticing doctors to practice in inner city or other predominately African American communities. There were no African Americans in my class of 120.

Shortly before entering medical school, I was in a serious car accident. I rolled my car during a thunderstorm on the highway from Lincoln to Omaha, Nebraska. The seat belt I was wearing saved my life, but in doing so, it produced a compression fracture of a lumbar vertebra. I was in excruciating pain until the emergency room physician gave me morphine.

If I had been of a different race, would I have been treated with the same compassion? Research today suggests I probably would not have been.

Myths About Black People and Pain

For centuries, there has been a false belief that blacks could tolerate more pain than whites. In 1851, a prominent southern physician wrote in the New Orleans Medical and Surgical Journal that due to “physical peculiarities of the Negro race,” black slaves were “insensitive to pain when subject to punishment.”

Even today, a young black man who goes to the emergency room with an injury is likely to be treated differently than a young white man. For example, a 2000 Annals of Emergency Medicine article reported that in an Atlanta emergency department, 74% of white patients with bone fractures received an opioid, but only 57% of African American patients with the same condition received the same treatment.

A 2016 study in The Proceedings National Academy of Sciences reported that a significant number of University of Virginia medical students believed there was a biological difference in pain perception between blacks and whites. The study exposed myths such as the common belief that "black people’s nerve endings are less sensitive than white people’s." In fact, 40% of first- and second-year medical students in the study agreed with the statement, "Black people’s skin is thicker than white people’s."

Another way of expressing the same opinion is to say that whites are more sensitive to pain than blacks. These myths are embedded in American culture and have been fomented by institutional racism.

A more recent study found that black children with appendicitis were less likely to be prescribed an opioid for their pain than white children.

Since blacks who are in pain are regarded with greater suspicion than whites, they tend to underplay the intensity of their pain in clinical settings. They are also more inclined than their white counterparts to try to pray their pain away or to consider pain to be a personal failing.

Despite common folklore, African Americans and Hispanics are less likely than white people to abuse prescription opioids. Yet blacks of all ages usually receive less pain medication than their white counterparts. They wait longer in emergency rooms for painkillers and receive less effective pain management when in hospice care.

The disturbing belief that blacks are more tolerant of pain is a form of racism. However, ER doctors who discriminate against blacks may not be racists. Their behavior, instead, may be due to the systemic racism in our culture. The difference is this: A racist acts upon an intent to discriminate based on race or ethnicity. Racism, on the other hand, is when actions are based upon false beliefs.

As Cory Collins writes in Teaching Tolerance, "Having white privilege and recognizing it is not racist."

Racism Isn't Over

On November 4, 2008, Barack Obama was elected as the first African American president of the United States. He said, at the time, "Change has come to America," and many Americans wanted to believe it had. Many hoped the election signaled that, finally, Americans perceived blacks as equal to whites, and racists had lost their influence in this country.

However, according to the Pew Research Center, Americans’ views of racist behavior have become polarized along party and racial lines. In 2019, about 58% of all Americans believed that race relations were bad and unlikely to improve. Then came the killing of George Floyd and the subsequent protests about the racial disparity demonstrated by law enforcement.

Increased awareness of the pervasiveness of institutional racism throughout our culture may be growing, but racism is certainly not over. Research clearly shows that racism, unconscious or not, keeps people of color from getting the pain treatment they need and deserve. White medical students and health care professionals must recognize the role white privilege plays in passive but brutal discriminatory practices, and actively work to rectify and remedy them.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD

You Can Get PTSD From Poor Healthcare

By Barby Ingle, PNN Columnist

I thought I would be a cheerleader and coach my whole life... and I will, just not physically.

I had to adapt the mental aspects of cheerleading to living with Reflex Sympathetic Dystrophy (RSD), so I found a way to keep cheering despite my physical disabilities. I also had to deal with post-traumatic stress disorder (PTSD) caused by poor treatment from medical providers.

Most people think of PTSD as something people develop during service in the military or in other stressful jobs. But PTSD can come from other traumatic situations, including chronic illness.

According to McMaster University, up to 60% of patients discharged from an ICU will suffer from PTSD. Symptoms can appear months after being hospitalized and may include anxiety, trouble concentrating, recurring flashbacks and nightmares.

My long-term providers have been great, but if I didn’t learn to get my emotions under control (mostly sadness from what I had lost due to RSD), I would not have gotten the care that I needed. I had to have a plan, stay organized, and on-topic when I went to the doctor.

Those are some of the lessons I’ve learned that help me cope with PTSD. I also get psychological help when I need it, rather than avoid the emotional stress, anger, fear and anxiety. I am not perfect at this. but I do recognize that I have PTSD and knowing it is half the battle.

It is important when setting your expectations as a patient to know if your provider is willing to add new treatments and procedures to their practice, so they can grow with your needs. Many providers will only suggest a single treatment because they make a living on that one option.

If they don’t like an alternative treatment, you may hear them say things like, “There is not enough evidence for that” or “You’ll have to do this before we can do that.”

Don’t get mad if your provider doesn’t offer a specific treatment that you want. Find one who does. Creating a supportive medical care team takes time, respect and trust in all of your providers. It is up to the patient to make their team, be involved with their care, and find the right providers.

The healthcare system in the United States is primarily set up for acute care, so navigating your way through it can be a challenge when living with a chronic or rare condition. Americans are taught as children to trust and believe in the white coats. You break a bone, get a strep throat or need stitches, you go to the doctor, get treated and leave.

I had to learn that's not always true when it comes to chronic conditions. Some ER providers don’t know how to help a chronically ill person in an acute care situation. They’re taught to take care of mental health concerns first, then physical ones.

When I changed how I talked with providers and stayed on track for the reasons I was there, I got better treatment. It took me almost three years to figure that out, but it is always possible to learn the tools and grow.

Here are four tips about going to the ER if you have PTSD from poor medical treatment.

1. Set good expectations for yourself and have a flexible plan in place. If they don’t provide the treatment you need, go to another hospital without a fight or confrontation.

2. Become aware of what they're saying and doing around you. Make a video or audio recording if that is allowed in your state. You can use it for documentation and to review later.

3. Improve your sense of self by knowing as much as you can about your chronic condition. Providers will notice if you are knowledgeable.

4. Keep it simple when dealing with the provider. Just like at a business meeting, if you put too many action items on the agenda, people will tune out or be overwhelmed.

Another tool is to learn about PTSD, how to avoid it, and about being gaslighted for having a chronic illness. Gaslighting is when someone tries to manipulate you and make you doubt yourself in order to do something that they want. I have been successful at skipping the gaslighting over the years. I think others can too, if they have the right tools.

As a patient, you can take control. I approach my healthcare with the attitude that providers are tools for me and that I am responsible for my own care. Being in control can help prevent PTSD and a host of other problems.

Don’t get mad. Go to another provider until you find the care you need. Especially when you feel wronged or not heard.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

What Pain Rules Are You Following?

By Ann Marie Gaudon, PNN Columnist

As part of his pioneering work on behavioural analysis, psychologist B.F. Skinner coined the term “rule-governed behaviour” in 1966.

We all live by rule-governed behaviours, they’re part of our learned history. For example, a young child can be told “never touch a hot stove” and they will not. Most people don’t need to suffer the consequence of being burned by a hot stove because we are able to learn the lesson from our language abilities.

Other rules may include judgments about ourselves, our environment and about others, which can lead to behaviours that make our lives more -- or less -- enjoyable.

When living with chronic pain, our minds give us no shortage of rules. Creating rules about pain is one way that our minds process and react to it. Why? It’s because our minds are always trying to protect us, to keep us safe, alive and as pain-free as possible..

However, the mind doesn’t discriminate and can be maladaptive. Some rules will be very helpful (“I must avoid certain foods due to colitis”) and some will be completely arbitrary and unhelpful (“I must avoid all types of exercise because of a torn rotator cuff”).

The problem with buying into some rules, or treating them as if they were the literal truth, is that we find ourselves going over the same self-defeating tracks over and over again. One simple sentence can take on colossal dimensions.

“Beth” will be our pain patient of the day. She has a torn rotator cuff and has taken on the sole identity of “chronic pain patient” to the exclusion of all other roles in her life. It’s become a real problem. Take a look at the rules Beth has developed for herself due to chronic pain:

“I can’t work if I’m in pain.”

“Feeling pain is unacceptable. I can’t live a good life with that feeling.”

“It simply isn’t fair that I should suffer with this.”

“Exercising will make the pain worse.”

As a result of Beth buying into these rules, what do you think her life has become? If you think that Beth has locked herself up tightly in a “pain chain,” then you are correct. Her suffering has gotten worse from this type of “dirty pain.”

You may have noticed that some of Beth’s rules are patently absurd. There is no fault to be found here. Our minds are rule makers and problem-solving machines – even when the problem is thus far unsolvable (chronic pain). Beth is not yet aware of how her mind’s reactions to her pain are choking off her life, and not yet aware that there are strategies to help her free herself.

As a professional therapist, I would not be telling Beth her rules are true or false, and I would encourage her to do the same. That self-argument would be unproductive: “I am unlovable”…”Yes I am lovable”… “No I am not”… and so on.

A debate like that is not helpful. Instead, I would be asking Beth questions in an attempt to put some metaphorical space between her and her maladaptive rules. You can ask yourself these same questions about your own limiting rules.

Can you identify your overall pain rule and can you name it? Nothing can be done about these restrictions until you become aware of them and can identify them yourself.

Do you notice what happens when you follow this rule? It is highly likely that when you follow the rule your anxiety and distress will go down in the short-term. However, in the long-term, your behaviour will become more and more rigid. You will have much less choice in your life and move far away from a life that you value. Relationships with yourself and others will pay a high price. Your suffering will increase exponentially.

Can you look at this rule in terms of workability? If you continue to follow this rule, is this a workable solution to your suffering? Will this be helpful to you to live a richer, more meaningful life? Are the long-term costs worth the short-term payoff?

Are you prepared to make a choice?  You cannot stop the rule from popping into your mind, but you do have a say in how you respond. Will you follow this rule or choose to do something different? Will you bend or change the rule? Will you be flexible?

Do you notice what happens with your choice? If you choose to follow the rule, where does that take you? If you choose something different, where does that lead to?

This type of self-exploration would be a first step in addressing Beth’s restrictive rules and the consequences of blindly following them. Learning to choose new rules to influence her behaviour is akin to laying down new tracks over the old detrimental ones.

Beth will do well to acquire all of the tools she can to help her to live a better life, alongside the challenges she faces from chronic pain. Psychotherapy is one of those tools.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website. 

Lessons Learned from 20 Years of Chronic Pain

By Mia Maysack, PNN Columnist

This year, I'm honoring the 20th anniversary of how long my head has been hurting.

I was fortunate to learn at a young age that we're not invincible. Slipping into a coma, two brain surgeries, and years of rehab resulting from a near death experience with bacterial meningitis has a way of humbling a person.  

Healing isn't linear and has thus far proved to be a lifelong process for me. I've got no reason to believe I've reached an apex of wellness.   

Simply put, the journey has had many ups and downs. Relationships with others were shattered because my own life was in pieces. I didn't know how to effectively communicate with others about my health, because I wasn't fully aware about my own limits. This ultimately overtook my career goals and almost claimed my sanity.

Maybe I lost my mind long ago. If you see it, let me know!

Of course, it hurts to bid adieu to people I still care about, but I've had to evolve to put my own self-care first. Drama isn't a thing I'm physically well enough to take on, as it greatly depletes me. I've had to cultivate avoidance of it by all means necessary.  

I've grown to no longer feel a desire to excuse or justify the accommodations I need. And I know that anyone who doesn't honor what my personal needs are couldn't be what's best for me. So though distance can hurt, it isn't always a loss. 

Anything that's forced -- be it with another person or within our own selves – is a signal to me. An instant message from somewhere deep. It’s an inner wisdom we all carry, always there to be heard and listened to. 

We may not know what exactly is happening in regards to our pain or illness, nor comprehend why it exists, where it came from or what we can do about it. But when we slow down to the point of fully acknowledging ourselves lovingly, there's power, freedom and a sense of peace in that.  

Of course, it's not just about us. How we conduct ourselves has an impact on every one and thing around us. If nothing else, this pandemic has undeniably demonstrated that much. Nothing about life, especially living under strenuous circumstances, is easy. It requires us to keep our heads up and continue growing.  

This requires many things -- diet, sleep, exercise and lifestyle balance, to name a few. One of the more recent revolutions of mine has been that I do not need to follow suit on what anybody else -- providers included -- thinks is best for me. It's a team effort and any form of support is vital and definitely a blessing. But any person or thing outside of ourselves can only take us so far. Our loved ones, friends and our healthcare teams need open communication about that.  

Not everyone has a cure or fix, but our circumstances can improve with a more helpful attitude. We can tune in and reflect on what aligns with where we're at on the path of figuring all this out – and then proceed according to that. We're still just as valuable as we've always been, just in different ways. 

A Greater Purpose

Until I chose to no longer allow this to just happen to me but affirmed myself in active boss mode over what repeatedly tests my will to live, there's a co-existence that's possible -- an intimacy with yourself, a language spoken within, that's solely between you and your vessel. 

It's not glamorous. It’s isolating and lonely. But the truth is that we're not alone, and your reading of this column thus far is a demonstration of that.

What I needed in life didn't exist, so I dedicated myself to creating ways to keep the parts of myself alive that matter most. I'm devoted to never giving up because there's a greater purpose to be found in our challenges. 

There are always new breakthroughs. We cannot know if something could help if we don't keep our minds and hearts open to it by coming to terms with our losses. Without a doubt, that’s the hardest thing I've ever done in my life, other than survive every day.

Addressing tough moments doesn't mean that's the end of them. But letting these conditions dictate the overall quality of my days became intolerable and unacceptable. Pain is a part of us – but not who we are. I’ve evolved to accept the past for what it was, the present as it is, and the future for whatever it'll be.  

Partake in self-pity moments when you must, but don't unpack and live there. It is okay, normal and natural to breakdown or even completely fall apart. Start over. Life is always evolving and it requires the same from us.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

I’m a POW in the Opioid Crisis

By Douglas Hughes, Guest Columnist

If you can hear the muffled sound of champagne being uncorked by lawmakers viewing my image, it’s no mistake. They have ignored my cries for help for a number of years, along with those of millions of other intractable pain sufferers.

I am 69 years old and have lost over forty pounds since August 2018. I am 6’2” and weigh 139 pounds, less than I did in eighth grade.

I cannot get anyone to care for me medically. I eat all the time, something else is wrong.  I had to change my primary care provider just to get a simple eye exam, the kind you do in a hallway. When tested, I could only see the top "E" with one eye. I had rapid-advancing cataracts.  

My picture is reality!  We have been so stigmatized and basic medical treatment denied to us, while the opioid pain therapies which kept us alive were abruptly taken away to profit from our deaths. 

Does my image impart distress? If not, you may hold the fortitude and inhumanity required for public office today. In West Virginia, elected officials still believe the opioid crisis is a due to a single drug -- prescription opioids -- diverted from a single source: pain clinics.

DOUGLAS HUGHES

We have done nothing morally or legally wrong to deserve the horrendous lack of basic civility that you would show a wretched animal. I frequently relate my desire to be treated as a dog. Not in humor, but for the compassion that a dog would get if it was suffering like I am. 

The federal government has gone to extraordinary measures to brutalize the functionally disabled for personal enrichment and fiduciary windfall for programs like Medicare, Veterans Affairs, Workers Compensation, Medicaid, private retirements plans and others.

The largest windfall is to health insurance companies, which reap immense savings by curtailing the lingering lives of their most costly beneficiaries, the elderly and disabled. 

You May Be Next

Since the Vietnam War, there have been many advances in emergency medicine. More people are saved each year, yet left in constant pain. In the blink of an eye, you could become one. A car wreck, botched surgery or numerous health conditions can leave you with chronic or intractable pain.  

My image is a warning. I didn’t become the person you see until the government intervened in the pain treatment I was getting for 25 years. This was under the guise of a well-orchestrated effort by many state and federal agencies. 

The Drug Enforcement Administration has been the most prolific in this coordinated, decades-long effort.  In 2005, I witnessed them investigate and close a pain clinic where I was a patient.

My doctor was at the top of his field, a diagnostic virtuoso of complicated pain conditions.  He himself suffered from one pain condition of which I was aware.  No drug seeker could ever pass themselves off as a legitimate pain sufferer in his practice, yet he was harassed and forced to close because of assumptions of opioid overprescribing asserted by medically untrained law enforcement.      

It was my great fortune to have him diagnose the crushing injury in my torso and hips after twelve years of suffering.  He and two other pain specialists said I was “one of the most miserable cases” they had ever seen.

The loss of this and other outstanding professionals has repercussions even today. New doctors being trained are misled to believe the doctor-patient relationship is nonexistent. It was sacrificed to special interest greed and the conflagration of a drug crisis that will never end until that relationship is restored.

How easily has the public been misled to believe all physicians became irresponsible at the same time by treating pain conditions incorrectly with opioids? Now we have law enforcement dictating what pain treatment is appropriate. It is nonsensical at best and unimaginably inhumane at its heart.

My picture is the culmination of this government-standardized pain treatment and its consequences.  If heed is not taken immediately by the medical profession, lawmakers and society at large, you may be next to choose between suicide or emaciation.

Killing functionally disabled intractable pain sufferers like me, or non-responsive elderly in hospitals, will not stop opioid addiction, drug diversion or overdose deaths. It will however leave you a skeleton, praying for help like a prisoner of war.

Only the hearts of tyrants and fools see anything redeeming in that.

Douglas Hughes is a disabled coal miner and retired environmental permit writer in West Virginia. He recently ended his candidacy for governor due to health issues.

PNN invites other readers to share their stories. Send them to editor@painnewsnetwork.org.

Pain, Protests and Prejudice

By Dr. Lynn Webster, PNN Columnist

The Salt Lake Tribune recently published a story that distressed me. It said that Scott Senjo, a criminal justice associate professor at Weber State University in Utah, tweeted threats at people who were peacefully protesting the alleged murder of George Floyd.

Senjo’s incendiary comments are hard to accept, particularly in light of the criminal charges filed against the four Minneapolis police officers involved in Floyd’s death. The peaceful protestors that he threatened in his tweets were innocent of any crime.

Senjo was placed on probation and then resigned. He has since apologized for his tweets. But apologies don't correct the harm he intended.

People in pain can probably relate very personally to current events. They have been protesting online and in peaceful demonstrations for years about poor treatment and restricted access to pain medication, but their voices haven't been heard. Their suffering hasn't been sufficiently acknowledged or addressed. Their frustration and anger are similar in many ways to the feelings of those who are protesting George Floyd's death.  

Our First Amendment Right to Protest

Amazingly, peaceful protests can trigger anger in some people. Like Senjo, they are sometimes willing to suggest harming or even killing protestors.

It is even worse when political leaders specifically suggest using military force to "dominate" protestors. These perverted, authoritarian attitudes are attempts to deny Americans their First Amendment right to peacefully "assemble, and to petition the government for a redress of grievances."

George Floyd's death from asphyxiation by police officers lit a match to a tinder box of anger and frustration built up over centuries. The outrage has become national, and even international, in scope.

At the outset, the protests focused on anger about the injustice and police brutality levied against people of color. As the peaceful protests intensified, however, the actions became diffused by people who were committing acts of violence and unlawfulness. Some engaged in looting, arson and other crimes. These destructive actions nearly drowned out the voices of peaceful protesters who were trying to be heard.

Even Nonviolent Protestors May Be Demonized

Critics such as Scott Senjo may draw no distinction between the two groups, and may simply think of all protestors as criminals, radicals and revolutionaries. For some, it may not matter whether protests are peaceful or not -- anyone who opposes authority, in their opinion, should be met with a heavy-handed response.

You may remember the story of Francine Hughes, who stood trial for murdering her husband as he slept. The book and movie based on her experiences are called The Burning Bed. Hughes suffered years of domestic abuse, and the police refused to help her. Finally, she felt her survival depended on ending her abuser's life. Her violent protest of the brutality she suffered was wrong, but it was understandable. Outrage at oppression and the will to survive can elicit primal behaviors.

Today’s protestors are reacting to oppression, injustice, violence and racism that have never been adequately addressed. We, as a society, have continued to tolerate a criminal justice system that subjugates those who often lack the resources to defend themselves. It is easy to point fingers at abusive members of law enforcement without questioning how we, ourselves, contribute to the situation with our own behaviors.

It is a fallacy to think that even peaceful protests by people of color are accepted. Former NFL quarterback Colin Kaepernick kneeled during the national anthem in 2016 to protest police violence and social injustice. President Trump deemed his action to be disrespectful to our flag and heritage, and suggested that the NFL fire anyone who kneels during the national anthem.

Many Americans applauded President Trump's remarks. Indeed, Kaepernick apparently was blackballed from the NFL after his peaceful protest, and his football career effectively ended.

Peaceful protests of police brutality are, metaphorically, another form of kneeling during the national anthem. It is not disrespectful to kneel in protest, and it is not wrong to ask that those in power treat all people with dignity and respect. On the contrary: peaceful protesting shows respect for our flag and our First Amendment rights.

An Example of How We Can Heal

I want to close by sharing an example of the Randolph, Massachusetts Police Department. The photo below was taken a few minutes after a planned protest was scheduled to begin.

The protest in Randolph that day was peaceful. Perhaps that is at least partly because of how members of the police force greeted the protestors.

The Randolph Police Department evidently trusted that anyone who participated in a protest would do so in a spirit of peace and respect, and they felt a responsibility to respond in kind. They also wanted to demonstrate their solidarity with a statement made by Randolph Chief of Police William Pace:

“The Randolph Police Department will always be committed to providing the best possible service to the community in a dignified and equitable fashion. Officers are trained to approach every situation with respect, compassion and fairness, and these are all traits that were not present in the treatment of George Floyd.”

Thank you, Chief Pace, and your police force, for your service and your compassion. This is where our country's healing begins.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD