Getting a Second Opinion From a Doctor Isn’t Always Practical

By Crystal Lindell

The first thing I did when I started dealing with debilitating chronic pain was go to the emergency room. The second thing I did was follow up with a local primary care physician.

But when nothing improved after a few months and multiple appointments with the doctor, I did what I had always been told to do in such a situation: I sought out a “second opinion.”

Alas, the second doctor wasn’t any help either. Neither were the third, fourth, or fifth.

If you’re dealing with any sort of complex health issue, odds are high that you’ve also had a bad experience with a doctor. Perhaps they dismissed your symptoms, refused to treat your pain, or maybe they were just plain mean.

A common refrain from healthy people in such a situation is: “Just get a second opinion.”

It comes across like common sense, especially in a consumer-culture where it’s smart to shop around. And while I wouldn’t advise against getting a second opinion – I have obviously done it myself on many occasions – there are some very important warnings that need to be included here.

One, getting a second opinion is both expensive and time consuming – assuming it’s even possible in the first place.

You can’t just leave your doctor’s office, walk next store and ask for a different doctor. You have to call around, find someone willing to take your insurance, and hope to get an appointment sometime in the next six months.  A lot of people, understandably, just don’t have the resources for such a task, especially when they aren’t feeling well.

Plus, when you do finally get in to see them, there’s a good chance they won’t be any help. So, you’re just out the time, the money, and the energy it took to get to their office.

Not to mention the fact that if you live in a rural area, a second opinion could be next to  impossible. There are many places in the United States where there literally is no second doctor within 100 miles to opine. 

Personally, I spent thousands of dollars traveling around the Midwest seeking out second opinions – including two fruitless trips to the Mayo Clinic. In the end, I was left with insurmountable medical debt and medical system burnout.

While I was eventually diagnosed with Ehlers-Danlos Syndrome, that did not happen because I sought a second opinion. It happened because multiple readers emailed me to suggest I look into it, so I brought it up to my doctor, and they sent me to a specialist to confirm it. 

Second opinions don’t just drain you though. There’s another, more hidden aspect to them as well. 

If you go to a different doctor to get a second opinion, you could be accused of something called “doctor shopping.”

The term is specifically used to dismiss patients who seek out second opinions, and most commonly, pain patients. 

It’s a code doctors use to frame a patient's desire for a second opinion as an effort to “score” opioid pain meds like a criminal.

Of course, in real life, if you’re actually dealing with horrible pain and the doctor you see is refusing to treat it, it makes total sense to look for a physician who will treat it. Any human in that situation would do the same thing. Pain refuses to be ignored. 

But common sense is not a factor if you are given the label of “doctor shopping” in your chart. Such a note will be used to dismiss all of your pain going forward.

Plus, in the age of easily transferable electronic health records, once anything like that gets put in your file, every doctor you visit will likely see it. 

So, while it’s entirely understandable that loved ones will often advise their sick family and friends to get a second opinion if they aren’t finding relief or answers from their doctor, it’s important to remember that it’s not always that simple. 

Of course, in a perfect world, patients wouldn’t even need to worry about second opinions, because the first doctor they saw would be kind, thorough and effective. We don’t live in that world though, so patients are left to navigate a lot of imperfect choices.

Doctors More Likely to Use Negative Terms for Sickle Cell Patients

By Crystal Lindell

Sickle cell patients are more likely than other patients to have negative descriptions in their medical charts, such as “noncompliant” and “noncooperative,” according to a new study published in JAMA Network Open.

The results are concerning because prior research has shown that such descriptors make doctors less likely to aggressively treat pain, a common symptom of sickle cell disease. The genetic disorder causes red blood cells to form in a crescent or sickle shape, which creates painful blockages in blood vessels. About 100,000 Americans have sickle cell disease, primarily people of African or Hispanic descent.

Researchers at the University of Chicago used artificial intelligence to analyze electronic health records and clinician notes for over 18,000 adult patients. They looked for seven negative words in patient charts: aggressive, agitated, angry, nonadherent, noncompliant, noncooperative, and refuse.

The descriptive words for sickle cell patients were then compared to those of four other groups without sickle cell disease: Black patients, patients diagnosed with chronic pain, patients diagnosed with opioid use disorder (OUD), and non-Black patients. 

They found that patients with sickle cell disease had higher odds of having negative descriptions than Black patients, non-Black patients and patients with chronic pain, but had similar odds of negative descriptors as patients with opioid use disorder. Non-Black patients had the fewest negative descriptors than the other patient groups.

Black patients with sickle cell disease, chronic pain, and OUD had the highest frequency (19%) of negative descriptors in their medical notes.

The researchers said their findings suggest there is bias against patients with sickle cell disease, particularly when opioids are involved.

“Although patients with sickle cell disease routinely use opioid medications to manage their chronic pain, the vast majority do not have an opioid use disorder,”  said senior author Monica Peek, MD, a Professor for Health Justice at University of Chicago Medicine. 

“It is a testament to the strength of their character that they do their best to live full lives while managing debilitating pain with the minimum amount of medication. And yet, within health professions and society as a whole, there is a persistent bias that stereotypes these patients primarily as ‘drug-seekers’ rather than regular people managing a chronic disease.”

The bias and stigma have real life consequences: If a doctor or nurse sees negative descriptors in a patient’s chart, they are less likely to effectively treat their pain.

When it comes to terms like “noncompliant,” the issue can be a bit of a chicken-egg situation — it’s difficult to know what came first. 

Prior research has shown that patients with sickle cell disease who experience discrimination in health care are less likely to follow physician recommendations. These same patients may then be labeled as “noncompliant,” which could perpetuate discriminatory behavior against them. 

The researchers said that clinicians should work to understand why a patient may not want to take a medication or has trouble adhering to treatment, and then adjust their treatment plan to support the patients from there. And they should avoid using negative terms in patient charts.

A Pained Life: Should Doctors Be More Curious?

By Carol Levy

In my last column, I wrote about doctors needing more empathy. I feel it’s important for them to understand and relate to whatever their patients are experiencing.

I have been sick for a few months, a jaw infection that keeps coming back. The left side of my face, the side with the trigeminal neuralgia, is where the swelling is located. 

The doctors all seem afraid to try and figure it out: “Well, it's probably related to the issues you already have there.”

If that were true, the swelling wouldn't be new. But it is, and that doesn't seem to faze them.

My family doctor referred me to a bunch of different specialists. Some actually touched the area of swelling, but other than a cursory heart and lung check, they did nothing but order blood tests, an MRI and CAT scan. All were negative. 

Then they threw antibiotics at it. That too didn’t help. Maybe that means they should look into it further, maybe by examining me? It doesn't happen. I merely get, in one form or another, “I haven't a clue. Sorry I can't be of more help.”

All of them were nice to me. Some even showed empathy. That made me feel heard. And yet, I wasn't heard. Had I been, they would have done more than the basic exam and tests. 

I thought a connection, through empathy, would enable more trust in doctors, more acceptance of a diagnosis or lack of one. 

It turns out, it’s not a question of empathy, but a lack of curiosity that makes me doubt their medical ability. Is a lack of curiosity the same as indifference? Do they just not care?

So many of us have experienced this when we present to a doctor with chronic pain. First of all, pain is wholly subjective. They have to choose to believe us (or not) when we say we are in pain. Then they have to make an effort to find the cause. That almost requires them to do a full exam, to show curiosity about our bodies, and therefore our pain.

It seems to me, if someone decides to go to medical school, curiosity has to be a motivator. Curiosity about how our bodies work, what happens when they don't, and what causes them not to work as they should.

What happens to that curiosity? Do doctors become jaded? Does the thought process go something like this: “I don't need to do an exam. Blood work and x-rays will tell me, and if they don't, that's the way it goes.”

I find I have to ask my doctor if it could be this or that. I have to suggest that he order an x-ray. It seems to be my job to come up with ideas. Since there is an infection, maybe there is an underlying disorder? 

Sometimes he merely shrugs.  Other times, he goes with my suggestions.

Maybe that makes it a partnership, but it’s one based on my work and thoughts, not his. And it’s all based on my curiosity about what is making me sick. 

Somehow, that feels wrong. Because, after all, isn’t being curious enough to figure out what is wrong the doctor's job?

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 40 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.” Her blog “The Pained Life” can be found here.  

Should Doctors Show More Empathy?

By Carol Levy

So many of us have complained, rightly so, about doctors not listening to us. They often ignore our words.

We tell them where the pain is (my back, my foot, my face, etc.) and how it feels (achy, sharp, throbbing, etc.). But when they repeat it back to us or write it into our medical records, the words are no longer ours. Doctors substitute words that are nothing like the ones we spoke.

Then there is the second part of listening -- of truly hearing what we say – and the feelings and emotions behind our words.

Pain makes me feel desperate, soul sick, and depressed. But in the 40 plus years that I’ve had pain from trigeminal neuralgia, not once have I been asked, “How do you feel emotionally? What is the pain doing to your life?”

In a TV commercial, a doctor describes the difficulty some of his older patients have with numbness in their legs or feet --- and how it’s a safety issue for those who have stairs in their homes. He says he never really understood what they were talking about until he started experiencing the same problem.

What is it about empathy? Is it inherent within us? Or is it something we have to learn and cultivate? Does a doctor have to experience the same things we do before he or she can honestly understand what we are going through?

For a doctor to feel empathy for every patient, to understand and feel viscerally what they are describing, might overwhelm them and cloud their judgement.

The opposite of that, a doctor who is detached or standoffish with patients, may think that allows him to be more objective when deciding on a diagnosis or course of treatment. But it can make them seem cold and uncaring.

Research repeatedly shows that patients want their doctors to see them as a person, not as a list of signs and symptoms. They want a doctor who listens on both levels, hearing our words and the “feelings” behind them.

Beth Israel Deaconess Medical Center, a teaching hospital in Boston, has taken steps to incorporate empathy into the doctor-patient experience. The hospital’s patient intake forms have two questions designed to build empathy.

The first is “How would you like to be addressed?” This allows for a patient to be spoken to respectfully, as opposed to the times when a doctor enters the room and immediately calls us by our first name -- whether we want them to or not. I'm not sure that is a form of empathy, but it is at least treating us like a person, not just “Patient X.”

The second question is “What is your main concern for this visit?" This is asked -- on an intake form -- to ensure the doctor will know our priority. But isn't that the point of interviewing us when they come into the exam room? True empathy would require the doctor to ask us face-to-face, “What is your major concern?” 

So here's the conundrum: Is the better doctor the one who is detached, looks at us as symptoms and test results, and computes the proper treatment?

Or is it the doctor who takes the time to listen to us, to understand our aches and pains, who hears why we’re upset about our symptoms and what they might mean?

If we're lucky, maybe the doctor will be a combination of the two.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 40 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.” Her blog “The Pained Life” can be found here.  

Awake, Not Woke: How Politics in Medicine Harms Patients

By Dr. Lynn Webster

Somewhere between facts and social media, “woke” -- a perfectly good word for being awake to reality -- got transmogrified into a slur. If that alchemy puzzles you too, consider this brief field manual for the Anti-Alarm-Clock Caucus: a how-to on mistaking earplugs for policy and empathy for extremism.

Culture-war rhetoric chills evidence-based care and worsens outcomes. Let me explain what we should do instead. 

If you’ve ever sat with someone who was in real pain, you know how brittle the anti-woke script sounds in exam rooms. Patient-centered conversation becomes suspect; motivational interviewing gets mocked as coddling; and a clinician trying to tailor a taper to a patient’s specific needs is accused of ideology.

The risk isn’t a bruised ego -- it’s disengagement. People clamp down, under-report substance use, skip follow-ups, and show up again only when they’re much sicker.

The irony is stark: even the critics who rail at “woke medicine” still rely on the public health infrastructure they deride when it’s time to manage the fallout.

Here’s the magic trick they perform: They rebrand attentiveness as excess and turn “be aware of harm” into “behold the woke mind virus.” Once they frame awareness as contagion, politicians can sell indignation like energy drinks. Any medical practice that looks like it’s noticing the individuality of a patient -- bias training, person-first language, or trauma-informed care -- gets dismissed as ideology, rather than craft.

Because they like to think of themselves as honorable, they follow a set of prescribed rules including:

Rule #1: Relabel Compassion as “Coercion”

When a clinic swaps “addict” for “person with a substance use disorder” because it reduces stigma and improves engagement, they accuse the “word police” of forcing the change in nomenclature. Opposing any sign of empathy requires less energy than reading the literature and seems far more satisfying than measuring outcomes.

If they made the effort, they would know that the National Institute on Drug Abuse (NIDA) advises using person‑first, non‑stigmatizing language -- e.g., “person with a substance use disorder” rather than “addict” -- to reduce bias in clinical care.  

In fact, in the International Journal of Drug Policy, John Kelly and Cassandra Westerhoff reported that the term “substance abuser” prompts more punitive judgments against the patient, even when trained mental health professionals are involved.

Rule #2: Recode Lifesaving Tools as Culture War

Naloxone, syringe services, and overdose prevention centers are tedious in one way: they work. So, label them “woke enabling” and starve them of funding. It saves leaders from saying the quiet part out loud -- “I oppose what works” -- while ensuring the body count stays offstage.

The CDC reports that Syringe Services Programs (SSPs) are “safe, effective, and cost-saving” and “do not increase illegal drug use or crime.” Access to and disposal of sterile syringes that won’t be reused is associated with a 50% reduction in HIV/HCV incidence. The reduction exceeds two‑thirds when combined with medications for OUD. HHS adds that harm reduction is “critical to keeping people who use drugs alive.”

In Massachusetts, communities implementing overdose education and nasal naloxone distribution (OEND) programs saw a 27% lower opioid overdose death rate at modest program scale and a 46% lower death rate at higher scale compared to communities without OEND.

Rule #3: Flatten Complexity Into Blame

Fentanyl potency, housing collapse, and workforce shortages are complex, unglamorous problems. “Woke drug policy failed” fits easier on a bumper sticker.

When Oregon struggled amid a fentanyl wave, the vibe merchants -- outrage marketers who sell mood over evidence -- declared drug decriminalization to be the villain.

But nuance seldom survives a fact check. The best evidence to date is that Oregon’s decriminalization of small amounts of drugs in 2020 was not associated with an increase in fatal overdoses after accounting for fentanyl’s spread. Oregon later recriminalized possession in 2024, even though state health officials reported a 22% decrease in overdose deaths in the prior year.

On the street, cruel rhetoric cues policy. Call overdose prevention centers “ideological” and it becomes simpler to shutter them than to count the lives they save. Smear syringe services as permissive, and you can cut programs that prevent HIV and hepatitis C, while claiming fiscal prudence.

Mock “harm-reduction spending” and you can bury the line item without ever debating the outcomes. From 2019 to 2022, New York City’s Opioid Prevention Centers (OPCs) resulted in no significant increases in violent or property crime, 911 calls, or 311 calls for drug use after opening.

Similarly, Vancouver, Canada reported a 35% reduction in overdose mortality rates after the opening of North America’s first supervised injecting facility.

Inside healthcare systems, the anti-woke script causes harm. Clinicians already practicing under surveillance and time pressures learn to avoid nuance with patients, resulting in less motivational interviewing, fewer shared decisions, and more default suspicion. The clinical vocabulary hardens, and patients pick up on it the way they would the weather.

When language gets sharper, so do consequences -- patients disclose less, absorb less, and leave treatment sooner. NIDA’s guidance exists precisely to counter those effects.

The Anti-Theatrical Fix: What Actually Works

The fix is simple. The antidote to anti-woke drama is being awake.

Call things what they are: naloxone reverses overdoses, syringe programs prevent infections, and supervised drug consumption reduces death and connects people to care. That’s not a worldview, it’s reality.

Use words that keep doors open instead of closing them. Person-first language is stigma hygiene, not a lifestyle brand. Judge policies by outcomes and timelines rather than outrage cycles. If the curve bends where capacity expands and supply is stabilized, then fund capacity and stabilize supply.

Retire spin peddlers as culture-war props. Federal judges noted that an anti-woke law in Florida crossed constitutional lines, ruling that “viewpoint discrimination is inherent in the design and structure of this Act.”

We could even try a fascinating (or, perhaps, boring to some) experiment in courage: let leaders earn applause for actions that quietly work, instead of things that loudly sting. Pay clinicians for patient-reported function, not for performing moral panic. Reward programs that shrink infections and deaths, not those that inflate arrest numbers. And when someone tries to sell you an anti-woke policy branded as “toughness,” ask to see the data, the denominator, and the deaths averted.

If you need a slogan, Gov. Ron DeSantis already gave you one and it just proves the point: “We will never surrender to the woke mob. Florida is where woke goes to die.”

None of this requires everyone to be “woke” or to join a mob. It requires us to be awake. The linguistic jujitsu that turned woke into a boo-word lets leaders score easy points, while patients lose hard chances.

You can see the toll in the quiet statistics, but you can also hear it in the voices that don’t come back, including the patient who won’t return after being called an unkind name; the parent who stops carrying naloxone because a lawmaker sneered at “harm-reduction spending”; and the person who overdoses in a locked bathroom because a supervised site was branded as “ideology.”

Be awake to patients and outcomes; let data, not drama, guide healthcare.

Lynn R. Webster, MD, is a pain and addiction medicine specialist and serves as Executive Vice President of Scientific Affairs at Dr. Vince Clinical Research, where he consults with pharmaceutical companies. He is the author of the forthcoming book, “Deconstructing Toxic Narratives–Data, Disparities, and a New Path Forward in the Opioid Crisis,” to be published by Springer Nature. Dr. Webster is not a member of any political or religious organization.

That Time My Doctor Fired Me as a Patient

By Crystal Lindell

When I first developed chronic pain back in 2013, I had so little experience with our healthcare system that I genuinely thought that all my doctors would do everything possible to help me, like the doctor that Hugh Laurie played on the TV series House. 

The pain I developed came on suddenly and intensely. 

It wrapped around my right ribs like a rusty barbed wire, and I had no idea how to manage it, much less live with it. I just woke up with it one day when I was 29 years old, and it never went away. 

I initially went to the emergency room, where they told me that it was likely an ulcer. But after trying to treat that and still being in horrific pain weeks later, I went to a primary care doctor recommended by a friend. 

The doctor worked for a university hospital near Chicago and, at the time, I still thought that a good doctor would be able to figure out what was going on and be able to successfully treat it. After all, the pain was in such a specific place. Surely there was something they could do? 

But after weeks of multiple rounds of tests and imaging revealed no answers, that doctor started prescribing gabapentin and basically threw up his hands in defeat. 

The only problem was, while he could ignore my pain, I could not. It haunted me. 

The pain was slowly eating away at my life and my will to live. I had a desperate need to find help so that I could survive. 

The pain would keep me up for days on end, and I would sometimes get a friend to drive me to this doctor’s office first thing in the morning, desperate to see him and hoping he would help me. He would usually just increase my gabapentin prescription and send me on my way.  

It didn’t work. So, I kept calling and insisting on more appointments, naively assuming he would help me. 

After a few months of this, he gave me “the talk.” He said there was nothing else he could do for me and that he would no longer be seeing me. 

I was too shocked to even react. How could he give up when the pain was still persisting? How was I supposed to live like this?

He didn’t offer to refer me to anyone else. He just abandoned me. 

One thing you learn quickly as a chronically ill patient is that doctors hold all the power. If one decides to fire you as a patient, you don’t have much recourse. It doesn’t matter if you still need their help – they won’t be giving it to you. 

I’m sure the fact that I kept insisting on appointments annoyed him. But while he was facing annoyance, I was facing agony and desperation. I didn’t know what else to do. I needed his help, even after he stopped giving it. 

Out of necessity, I decided to uproot my life and move back in with my family, so that I could scale back how much I was working and focus on trying to figure out what was going on with my body. 

I eventually connected to a new doctor at a different university hospital and, thankfully, he did not give up on me. In fact, he was able to get me onto an opioid-based treatment plan that I still use today. He was able to give me back my will to live, and I still see him for my pain now.

My pain was eventually diagnosed as intercostal neuralgia, likely linked to my other eventual diagnosis, Ehlers-Danlos Syndrome. I still suffer from the pain today, but it’s much better managed. 

If you scroll through any online chronic illness group, you’ll find that a lot of other patients have also been fired by their doctors. 

I’m not sure what the solution is. After all, if a doctor doesn’t want to treat you anymore, it’s probably in your best interest to stop seeing them – they just hold way too much power over your body. 

But unfortunately, as it stands, they are able to leave you out in the cold with no alternatives for medical care. And if you’re suffering from a serious health issue, finding a new doctor can feel overwhelming and near impossible. 

Doctors should be required to refer your case to someone else if they want to fire you as a patient. They should have to help make sure that you’re still receiving healthcare, even if your condition is not acutely life threatening. 

I still wish the real world was filled with doctors who were as tenacious as Dr. House, but since it’s not, patients need more well-enforced rights. 

While doctors have the luxury of deciding which patients they will treat, patients are stuck living with the body that still needs treatment.. 

If we as patients aren’t allowed to give up on our health, doctors shouldn’t be allowed to give up on us.

Where Have All the Pain Doctors Gone?

By Pat Anson

In recent years, it’s become increasingly difficult for a patient in pain to find a new doctor. Many physicians have stopped treating pain, retired early or switched specialties, rather than run the risk of being investigated or even put in prison for prescribing opioids.

In a recent PNN survey, one in five patients said they couldn’t find a doctor to treat their pain. Others said they were abandoned or discharged by a physician (12%) or had a doctor who retired from clinical practice (14%).   

“All the doctors in this area are justifiably terrified to involve themselves at all with opiates,” one patient told us. “It's now going on 6 months that I've been hunting for a doctor who isn't afraid to continue my former opiate regimen, which only made my pain tolerable, allowing me some small quality of life. I don't know what to do next and I am truly at my wits end.”

“This year my doctor retired, then 8 months later the hospital closed the pain clinic. I'm waiting to get into a new pain clinic that is 200 miles away. Every local doctor refuses to prescribe my pain meds, so now I'm forced to travel 4 hours each way to see a new doctor,” another patient said.

“I have to fly to another state for my medical care,” said another person in pain. “Many patients I’ve met over the last ten years have not had the same care. They can’t afford the medical treatment and can’t find doctors to help.”

A new study suggests the problem is only going to get worse, because medical schools are seeing fewer anesthesiology residents applying for fellowships in pain medicine. The number of applications fell 45% from 2019 to 2023.

“While the demand for pain specialists is growing in the U.S., the pipeline of new doctors to fill these roles is drying up,” says lead author Scott Pritzlaff, MD, an associate professor in the UC Davis Department of Anesthesiology and Pain Medicine and director of the school’s Pain Medicine Fellowship program.

Pritzlaff and his colleagues analyzed data from the National Resident Matching Program (NRMP), Electronic Residency Application Service (ERAS) and a special report from the American Association of Medical Colleagues (AAMC) to see trends in medical specialties.

Their findings, recently published in the journal Pain Practice, show significant changes in specialties that are being driven by market forces and professional preferences. While demand and pay scales for general anesthesiologists have increased, the number of anesthesiology trainees applying for pain medicine fellowships is dropping. The trend is most notable among female residents applying for the specialty, which has fallen by 27.5%, compared to a 9.8% decline in male applicants.

“Fewer doctors choosing pain medicine means longer wait times, rushed care and fewer treatment options for patients suffering from chronic pain,” Pritzlaff said. “In a country already grappling with an opioid crisis, this could leave millions without the specialized care they need to manage their pain safely and effectively.”

Co-author Chinar Sanghvi, MD, says the drop in applications is partially driven by opioid lawsuits against drug makers and criminal cases against doctors, which have made medical residents and trainees leery about practicing pain medicine.

“For trainees observing this during their formative years, it may have created a perception of pain medicine as a high-risk specialty — both legally and ethically,” said Sanghvi, an assistant clinical professor in the UC Davis Department of Anesthesiology who mentors first and second year-medical students. “This fear of litigation, coupled with the stigma surrounding opioid prescribing, could discourage aspiring physicians from entering the field.”

The data also revealed some upward trends. Applications from residents for physical medicine and rehabilitation fellowships rose almost 33%, while residents specializing in emergency medicine increased by 190%.

General anesthesiologists have some of the best paying jobs in medicine, with median salaries of nearly $499,000 a year. For an anesthesiologist to specialize in pain medicine requires an additional year of training and pays less. With high demand and higher salaries, many doctors skip the extra training and enter the workforce right after completing their anesthesiology residency.

To help attract new residents, the UC Davis Health Division of Pain Medicine increased its recruiting efforts and became more active on social media. The efforts helped UC Davis fill its fellowship slots in pain medicine despite the national downturn.

“Pain medicine is caught in a strange paradox. On one hand, pain is one of the biggest public health problems in America, costing billions annually. On the other, the field is underappreciated and underfunded,” said senior author David Copenhaver, MD, a professor in the UC Davis Department of Anesthesiology and Pain Medicine and chief of the Division of Pain Medicine. “This decline isn’t just about numbers — it’s a wake-up call for the future of pain care in America.”

A Pained Life: Can They Feel What We Feel?

By Carol Levy

How many times have I seen a post or comment in a chronic pain support group that read: “I wish the doctor (or my family, colleagues, friends) could go through this to really understand how I feel.”

I also wish they could, but is there any way such a thing could be accomplished?

Then I read about a course at a Japanese medical school, in which students pretended to be patients and were hospitalized for two days and one night. Students learned firsthand the stress, anxiety and loss of control that comes with being a hospital patient — like being poked and prodded, being told when to sleep, when it was time to get an x-ray, to have blood taken or bandages changed.

Students also observed “the distress of other inpatients” and the “psychological pressure” they felt from physicians. This was meant to enhance their empathy skills and to further their professional development.

It sounds like a good idea. But it's not reality.

Maybe in some form, the course replicates Philip Zimdardo's 1971 prison experiment, in which Stanford students were assigned to be prisoners or guards in a simulated prison. The study was meant to focus on the power of roles and rules, but was ended early because of the behavior that emerged in both groups.

Very quickly the students who were “guards” acted like guards by asserting their control and abusing their power. And many of the “prisoners” acted like prisoners, showing signs of distress from the powerlessness that comes from being ruled by guards

Our pain can also make us feel powerless, especially when it comes to treatment and getting the medications that we need. In that regard, we are indeed powerless. The doctors and pharmacists have all the power.

When we are hospitalized, it often intensifies that feeling of powerlessness. We are “imprisoned” in the hospital and not allowed to leave until someone in power gives us permission. We are in the hands of people who decide what we can do, where we can go, and if our cries of pain will be attended to or not.

They may be called doctors or nurses, but in a very true sense they are guards. Our freedom and health in are in their hands.

Is there really a way to replicate for others how we feel, what we go through?

In a promo for the new TV series “Brilliant Minds,” Dr. Wolf, the main character, says he wants to know what his patients are feeling, so he can feel it himself.

My first thought was that would be great if it was doable. But then I thought about it more deeply. There is no way it could work. A doctor can go into the hospital as a pretend patient, even allow himself to have medically induced pain, but they will always know it is just an experiment. Their pain will end, they can go home when they want, and they will feel fine.

It would make life so much easier for us if others could feel our pain. Absent compassion and empathy, I don't see how it is possible.

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.” Her blog “The Pained Life” can be found here. 

Is Your Doctor a Good Listener?

By Carol Levy, PNN Columnist

Many of us have had doctors that we loved. They not only listened, but actually heard us. They gave us their time, attention, and cared -- not only about us, but doing the best they could for us.

They truly follow the intent of the Hippocratic Oath: primum non nocere, or “first, do no harm.”

Then there are the doctors who don't care, and don't even seem to care that we know they don't care. They are quick with us. They don't listen or hear. They have their theories. The facts that we give them about how the pain feels, where it is, etc. make no difference.

I went to a new neurologist. She was very nice, but ignored my pain from trigeminal neuralgia and my long history of surgeries and medications. She decided my issue was “anxiety,” which I never said I had.

She repeatedly asked, “Is your problem anxiety?” I shook my head “no” to answer the question and to show my frustration with her for asking it.

Nevertheless, at the end of the appointment, she asked, “Do you want me to prescribe something for your anxiety?”

Primum non nocere? No. She didn't do harm, but she sure as heck didn't help.

Dr. Norton, my neuro-ophthalmologist, didn't seem to care either, at first. He gave me short shrift by rudely saying, “Stop being so schizophrenic in how you're telling me about your pain.”

Because I was so afraid and worried, I gave him the details in scattershot form, instead of chronological and neatly. After two appointments, he finally understood my pain was real. Suddenly, he cared! The change in him was almost palpable. His words were supportive. He worked to give me hope.

When I first went to the hospital for a pain flare, I was overwhelmed by it. It was spontaneous and constant.  My only hope was that Dr. Norton could stop it.

“Is this ever going to go away?” I asked, my voice tremulous with pain and worry.

“Let me worry about that,” he said. “That's my job.”

His words were a verbal hug. Primum non nocere. He cared about me and would make sure I suffered no further harm. I felt like I was being helped.

Dr. Norton was the face of the caring doctor, the one who follows the oath, who puts his patient first. And that makes all the difference.

As for the doctor who wanted me to say I had anxiety, I canceled my next appointment with her. She was the second neurologist I had seen.  The first was also entrenched in his theories and didn't care about me or the facts.

I was concerned about consulting with a third doctor, fearful I would be accused of "doctor shopping.” I asked my nurse practitioner, “Do you think seeing another neurologist will be an issue?" She shook her head no.

"You have valid reasons for not wanting to stay with them. You need to find someone who will listen to you and deal with the pain," she told me.

And she was right.  I needed another doctor, a doctor like Dr. Norton, (who moved out of state). I need a doctor who works with me, not against me.  Who truly practices primum non nocere.

And that should be the goal for all of us.

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.” Her blog “The Pained Life” can be found here. 

What Doctors Should Ask Patients in Pain

By Carol Levy, PNN Columnist

I learned in childhood to keep my mouth shut if I had pain or was feeling sick. My siblings would say, "Stop your whining. Just go to your room if you're feeling so bad, so we don't have to hear about it!"

I learned to say nothing, no matter how bad I felt.

That is how I still handle it today. When I see a doctor about my trigeminal neuralgia pain or some other pain, they’ll often say, “Your pain can't be as bad as you say. You don't act like you're in pain.”

I was at the neurosurgeon's office. One of his residents wanted to touch the left side of my face and I wasn't sure why. Maybe to see what I would do? He knew any touch to the affected area would set off horrible, terrible pain.

“Are you ready?” he asked before touching me. His finger hit the mark and I instinctively jumped back, but didn't make a sound. The resident looked at me; like he was waiting for a cry, scream, wail, or any normal vocalization of pain. Instead, I was silent.

“Are you okay?” he asked, somewhat warily. He didn't realize I was literally unable to answer. My childhood lesson not to speak about pain had morphed into mute silence as an adult. I was speechless; my larynx unable to produce a sound.

I cleared my throat a few times in an effort to speak, while raising a finger in the universal sign of “wait.” After a few minutes, I was finally able to speak, but my words would not come out clearly.  Once triggered, the pain takes its own sweet time before it settles down.

My words were interspersed with more throat-clearing: “I can't, hahahem, speak when the, hahahem, pain is triggered.” 

Others who have chronic pain usually say the opposite: “When a doctor sets off my pain or I am in pain, I have no choice. I scream, I cry or I curse. I make faces and grimace.”

It is an automatic response. And often the doctor's reply in words or facial expression is, ”I don't believe this act you're putting on."

So what's a pain patient to do? What's a doctor to do?

For us, it's simple. If the doctor says, “It really isn't necessary to be so loud and to use profanity, or to wail and scream. In fact, it makes me think you're being overly dramatic.”

We need to reply in a way that says, “Doctor, this is what I do to express my pain. It may be unusual to you, too loud, or too unpleasant. But it is the only way I know how to express it.”

The doctor on the other hand? He doesn't know unless he asks a key question: “How do you let others know if you are in pain or what your level of pain is? Do you express it by crying or with grimaces? Or do you become silent?”

It comes down to one of my favorite sayings: You don't know what you don't know. And if you don't know what you don't know, you don't know what to ask. Our doctors need to ask.

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.” Her blog “The Pained Life” can be found here.

The Fading Power of the White Coat

By Carol Levy, PNN Columnist

I wrote a column in 2018 about the arrogance and poor listening skills of some doctors ("Tyranny of the White Coat”). I ended it with these words: “It’s a sad state of affairs when you take a liking to a doctor because they took the rare action of actually listening, hearing and respecting their patient.”

Most physicians see the exam room as a teeter-totter; the doctor sitting high up on one side and the patient below them on the ground. That is often still the case, but I notice when I go to blogs written by doctors (such as KevinMD), that they often write about the loss of respect they find almost everywhere.

Doctors no longer have the “power of the white coat.” In public settings such as hospitals and restaurants, the staff no longer looks at them in awe or bow down to their titles: “Yes doctor, your table is waiting for you.”

I understand the sadness from losing status as the top gun, but I thought most doctors went into medicine to help their patients, not for the superiority their degree gives them. I thought the work they put in at medical school was to learn their craft, not to use as a banner of privilege: “I spent years in school and had to work very, very hard to get where I am. Therefore, I deserve to be looked at as superior.”  

I also go to blogs written by patients, many with chronic pain, and I read the opposite: “How dare these 'doctors' think they're so much better than me? I shouldn't have to be obeisant to them, yet that's what they want from me.”

What if we didn't have the hierarchy of the exam room? What if we were able to come together as patients and doctors, to have a round table or focus group where we could talk freely? How educational that would be, for both sides.

We could then look at doctors as our equals and they could see us in the same way -- not someone to be talked down to. Too many doctors seem to believe we are uninformed, misinformed or just ignorant, and need to be spoken to like a 12-year-old.

We might then see the doctor as a person, someone with more knowledge and experience with our diseases and disorders. Someone who can be a helper, not a protagonist. We could then see them as teachers, which in many ways they are.

What a great appointment that would be. We’d smile at each other and see one another as human.

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.” Her blog “The Pained Life” can be found here.

Chatbot ‘Doctor’ Preferred Over Real Ones

By Crystal Lindell, PNN Columnist

Would you rather get your medical advice from a human physician or a chatbot powered by artificial intelligence?

According to an unusual study recently published in JAMA, you’d be better off listening to the chatbot, which gave advice that was rated significantly better both in quality and empathy.  

A team of researchers asked the chatbot -- called ChatGPT – 195 hypothetical questions a patient might ask that were posted online in a Reddit forum called "Ask a Doctor."  A team of healthcare providers then compared the chatbot’s responses to those posted by actual physicians in the same forum.

The responses from ChatGPT were the clear winners. The evaluators preferred the chatbot responses over the physicians’ answers about 79% of the time. The average rating for the chatbot was "better than good," while the physicians overall were given a lackluster grade of "acceptable response."

The evaluators also gave the ChatGPT high marks for empathy, while the physicians’ responses were rated as only “slightly empathetic.”

One of the hypothetical questions involved a patient who accidentally swallowed a toothpick and wanted to know if they were at risk of dying. Here’s how the chatbot and a physician responded:

Physician Response:

If you've surpassed 2-6 (hours), chances are they've passed into your intestines. Which means it can't be retrieved easily.

Many people can swallow razorblades and toothpicks without issues. In case you develop stomach ache, then don't hesitate seeking out an emergency room, and remember to point out the swallowed tooth pick. For now, they won't be doing much.

Chatbot Response:

It's natural to be concerned if you have ingested a foreign object, but in this case, it is highly unlikely that the toothpick you swallowed will cause you any serious harm.

Toothpicks are made of wood, which is not toxic and will not cause poisoning. However, it is possible for a toothpick to cause injury if it becomes stuck in the throat or if it punctures the digestive tract. However, this is unlikely to happen with a dull, cooked toothpick that is only 2 cm long.

If you are experiencing any discomfort or symptoms such as abdominal pain, difficulty swallowing, or vomiting, it is important to contact a healthcare provider for further evaluation. However, if you are not experiencing any symptoms, it is safe to assume that the toothpick has passed through your digestive system, and you do not need to be concerned.

It's always a good idea to be cautious when consuming food and to remove any foreign objects before eating. It's understandable that you may be feeling paranoid, but try not to worry too much. It is highly unlikely that the toothpick will cause you any serious harm.

Which answer would you rather get as a patient? The evaluators preferred the chatbot’s response to the toothpick question, as they did for other questions about a head injury, a lump possibly being cancerous, and if getting bleach in your eye might cause blindness. The chatbot response to those questions also got high scores for empathy.

As a chronic pain patient, I have to admit I felt a little smug when I first saw the headlines about this research. My initial thought was, of course, the chatbot was more empathetic than the doctors! Doctors are often mean, rude and dismissive. I even wrote a column about using a weird trick to manage their egos.

Is this the beginning of the end for human doctors? The short answer is: No. This was a very narrow study with a number of limitations. The authors said they were only trying to look into the possibility of physicians using artificial intelligence (AI) to essentially ghostwrite responses to patients.  

“Chatbots could assist clinicians when messaging with patients, by drafting a message based on a patient’s query for physicians or support staff to edit,” they said. “Such an AI-assisted approach could unlock untapped productivity so that clinical staff can use the time-savings for more complex tasks, resulting in more consistent responses and helping staff improve their overall communication skills by reviewing and modifying AI-written drafts.”

The possibilities for using AI in medical settings are only just emerging, and it could radically change how we think of healthcare and how doctors think of us.

One thing that might improve is how doctors and patients communicate. I know doctors are capable of giving more empathetic answers on their own. The problem is, in the United States at least, they usually just don’t have the time to do so. If AI can help, we should let it.  

However, it should be noted that several authors of the study, which was led by researchers at the University of California San Diego, disclosed ties to the artificial intelligence industry, which means they may financially benefit from any attempts to sell AI to medical professionals.

Also, as the researchers acknowledge, the study doesn’t prove that chatbots are better doctors than actual doctors, just that their answers were better. Physicians would likely respond to medical questions differently in an office setting, as opposed to an online post.

Researchers also did not assess the chatbot responses for accuracy — which is a pretty big deal when it comes to medical care. It’s one thing to write an empathetic reply, it’s another to correctly diagnose and decide on a treatment.

That said, when comparing the various responses, the chatbot did seem to give similar advice as the doctors, which makes me think they were mostly accurate. That may not sound great, but consider how often doctors are wrong. Medical errors are one the leading causes of death in the U.S.

AI technology is rapidly improving, and it’s impossible to predict what it will be capable of in the coming years. But I do believe it’s going to radically change many aspects of our lives, including healthcare. Hopefully, it makes it better. But at this point, I’ll settle for not making it worse.  

Crystal Lindell is a freelance writer who lives in Illinois. After five years of unexplained rib pain, Crystal was finally diagnosed with hypermobile Ehlers-Danlos syndrome. She and her fiancé have 3 cats: Princess Dee, Basil, and Goose. She enjoys the Marvel Cinematic Universe, Taylor Swift Easter eggs, and playing the daily word game Semantle. 

The High Price of Being Your Own Advocate

By Cynthia Toussaint, PNN Columnist

I’ve always encouraged women in pain to be strong advocates for their care. But after decades of pushbacks and harassment from the medical community for doing just that, I’m starting to question whether self-advocating does more harm than good.

The U.S. healthcare system is flat-out busted because it revolves around making money rather than making people well. The “standard of care” model of medicine is tried and true as profit generating, while it cloaks itself in the deceit of what’s in the patient’s best interest.

While individualized “patient-centered care” is often touted, and makes great buzzwords for marketing material, whenever I elect something out of the norm, my healthcare providers harass and bully me to return to their cookie-cutter model. When I don’t comply, my “care” gets ugly, causing me physical and emotional harm.  

I’ve bucked up against this thuggery for 39 years, the first 20 fighting an HMO. That was the trust breaker for me. After escaping that illness-provoking gulag, I felt certain that at last my care choices would be respected. I was wrong.

While a fresh pain management doctor initially helped, he soon pushed hard for interventions that I instinctively knew weren’t right for me. When I repeatedly said no to prescription fentanyl, ketamine infusions, two spinal cord stimulators and an intrathecal pump, this MD often called to bawl me out before slamming down the phone. For a time I put up with his tantrums because he was the first doctor who validated my Complex Regional Pain Syndrome (CRPS) diagnosis. But at last, my health couldn’t take his abuse and I cut this jackal loose.   

Cancer Diagnosis    

It gets worse. Twenty-two years ago, when I was first diagnosed with ductal carcinoma in situ (aka, “Stage Zero” breast cancer), my oncologist told me I had three months to live if I didn’t undergo surgery, chemotherapy and radiation.

Because my CRPS was a ginormous complication and to me the treatment didn’t match the diagnosis, I chose to “wait and watch.” That doctor was irate, even calling my home to press me into “life-preserving” treatment. Perhaps worse, he never celebrated the reality that my “cancer” ultimately came to nothing. Over the years, I’ve watched ductal carcinoma become a controversial diagnosis because of the over-treatment associated with it. Wow, I was almost a statistic.

In 2019, when I was diagnosed (in the other breast) with real cancer, stage 2 triple-negative, my first thought was, “God, please no, please, please, don’t make me wrangle with the western healthcare system again!”

In short order, I learned that cancer treatment is the mother of all standard of care, and in this do-or-die arena, you don’t ask questions. You say, “Thank you, sir. May I have another?” Problem is, that memo, now and forever, means nothing to me.

Naturally, I was threatened with impending death during the six months I carefully researched and considered treatment (my tumor actually shrunk during that time.) Then, after being a “super responder” to chemo, I turned down the standard-of-care follow up surgery. My tumor was gone, confirmed by imaging, and all studies showed that I had a better chance of survival without going under the knife.

I guess it won’t come as a surprise that every oncologist who crossed my path at that time said my choice was foolhardy, even madness, then chased that declaration with another death threat.

Boy oh boy, do I pay for sticking up for me. Since then, with every scan, they find a new “concern,” be it a shadow on an image or a thickening lymph node. One imaging doctor told me straight up that my cancer had returned and they expected me to jump back into their treatment assembly line.

I was this close to being spooked into that unnecessary surgery which, due to my CRPS, would likely have destroyed my life. Thank god a colleague questioned why they hadn’t done full scans to see if the cancer had spread first, stopping me in my tracks. Lo and behold, those scans were negative for any and all cancer. No matter. My doctors insisted on the operation, denying me a second opinion, the reason given, “Whether you have a malignancy or not, you have to do surgery.” I arranged for a second opinion at another hospital that confirmed I was cancer-free. Hallelujah!

During this hellish time, I paid the advocacy price in a new, heartbreaking way. I had a 15-year internist who I trusted with my life. In fact, she guided and supported me through all of my cancer treatment decisions. She alone respected the dangers of CRPS and recommended “de-escalation” from unnecessary treatment whenever possible.

The system didn’t like her interference though, and applied pressure. She dropped me as her patient when I needed her most. That was eight months ago, and I’m still working with a therapist, using guided imagery, hypnosis and EMDR therapy (eye movement desensitization and reprocessing), to unravel the trauma of that betrayal.

No Regrets

Despite it all, I move forward.      

Decades into CRPS and a year and a half out of cancer, I’m surprisingly feeling tip-top. That is, until it’s imaging time when the pummeling takes an exhausting toll. My pain and IBS flare, I hyperventilate, stop sleeping, my body gets tight and I have anxiety attacks. I don’t dread the cancer coming back (make no mistake, that fear is REALLY bad) as much as I dread the doctors new “concern” and the ongoing communiques that keep me in a place of anger, resentment and un-wellness.

Reflecting on my chosen role as a self-advocate, I still think the pros outweigh the cons for women in pain. We need to be in control of our treatment choices, whether they’re bucking the trend or going with the flow. And just as important, we need to be ready to walk away from an uncomfortable care situation.

Despite my self-advocacy nightmares, I have no regrets. I continue to make the best choices for me in this dysfunctional, profit-driven healthcare system. Still, I yearn for their support. I wish they’d care about and root for me. I wish they’d celebrate my good health. Mostly, I wish they’d stop harming me.

As I talk with other women angry about past cancer treatment they were coerced into, many who now deal with chronic pain as a result, I’m emboldened to continue speaking out about our fear-based model of over-treatment. My heart aches for them and for those who will come.

Fear and pressure should never drive our care decisions. The way I see it, the biggest mistake we women in pain can make is to sit on the sidelines of care and not do our job as advocates. If we hand our power over to the healthcare professionals and the systems that lord over them, we’re doomed.

The cost of compliance and victimhood is too damn high.                      

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with CRPS and 19 co-morbidities for nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

Have You Been Labeled a 'Difficult' Patient?

By Ann Marie Gaudon, PNN Columnist  

We’re all aware of doctors labeling a patient as “difficult” or some other derogatory term. There are even entire categories set up for these “heartsink” patients, who behave in ways that doctors consider dependent, entitled, manipulative or even self-destructive.

Imagine if doctors moved the conversation away from “difficult patient” to “difficult doctor-patient interactions” by taking a closer look at behaviour patterns that can occur in their relationships with patients.

Let’s start at the beginning – literally — by studying interactions between infants and their caregivers. “Attachment Theory” was first developed by the English psychologist, psychiatrist and psychoanalyst John Bowlby.  He proposed that infants have a biological drive to seek nurture and closeness to their primary caregivers. How the caregiver attunes to that baby will actually shape how the infant’s brain develops. Ultimately, our adult selves are influenced by these layers of memory and how we adapted to that care.

There are four main “Attachment Styles” seen in adults, according to Bowlby and psychologist Mary Ainsworth. How do these four styles play out in the doctor’s office? Do you see yourself in any of them?

1) Secure Patient

• Is often trusting, comfortable seeking help and values advice

• Doctor feels sympathetic to patient’s needs and confident that advice will be followed

• Successful outcomes are maximized with this relationship

2) Avoidant/Dismissive Patient

• Is often distant and does not trust the doctor; may miss appointments

• Displays a lack of engagement; may minimize symptoms and dismiss need for treatment

• Doctor may become frustrated with patient saying “I can’t” or “It’s not really that bad”

• May increasingly withdraw from care; denial of problems and emotions

• Patient may be in crisis when their hyper self-reliance strategy begins to fail

3) Ambivalent/Anxious Patient

• Has little trust in ability of self and others; expects rejection; can be highly emotionally reactive

• Doctor may feel confused by patient’s alternating avoiding and approaching; being unpredictable

• Doctor may get upset with inconsistency of behaviour, especially if patient pulls away when help is offered

• Patient anxiety increases, depression may also appear; may withdraw and miss appointments or leave in the middle of one

4) Disorganized Patient

• Little trust in others; cognitive ability becomes disorganized when stressed

• May be fearful of doctor and treatment; may be triggered by earlier traumas

• Doctor may become fearful for patient and inability to contain patient’s overwhelming emotions

• Doctor may feel like a failure and try harder

• Overwhelming complexity of patient’s problems can fragment clinical teams

• Patient and doctor may reinforce feelings of being overwhelmed and loss of control of the situation

• Care may be chaotic, ineffective; mental health crisis may prevail

If physicians were familiar with Attachment Theory and the style for each patient, they could tailor their approach to best serve the patient. Predicting and planning for possible poor outcomes could benefit with a reduction in negative experiences for both patient and physician.

Shifting away from “difficult patient” attitudes and pejoratives toward “Attachment-Based Care” would be a shift away from what is unproductive and a move toward helpful and effective treatment approaches.

Patients with an Avoidant Attachment Style could be provided a predictable treatment framework (no surprises) and information that is clear and not emotionally challenging. These patients can help themselves by being honest with the physician if they are not happy with their care. Keeping a journal and using internet-based telehealth may also be beneficial for the patient to use.

Patients with an Ambivalent/Anxious Attachment Style could be encouraged to build self-confidence to increase their ability to tolerate anxiety and uncertainty. Scheduling regular appointments to avoid the patient feeling it is necessary to magnify symptoms to receive care is another strategy. Being consistent and clear will also help to decrease anxiety. If these patients can learn to regulate their emotions, this will go a very long way in clinical interaction benefits. Regular exercise and mindfulness techniques will also help. A therapist will almost certainly be required.

A physician being aware that patients with a Disorganized Attachment Style are often inconsistent in attending appointments and show ambivalence in decision-making will allow the professional to plan ahead and pull in a support person if they feel overwhelmed. The seriousness of this patient in a stressed state must be understood and supported, as anger and decompensation are common. For this patient, a patient advocate may be very beneficial as well as a management plan that all can collaborate on.

Attachment Styles are influential in all areas of life and important determinants of therapeutic interactions and relationships. Using an Attachment-Based Care approach would provide a framework to understand these interactions and how best to serve the needs of patients.

In an ideal world, all non-securely attached patients as well as non-securely attached physicians would explore their maladaptive strategies with a trained therapist to help move them toward a Secure Attachment Style that has less suffering and psychologically flexible strategies for living. Until that time, let’s stop the name-calling and work toward compassionate care for all patients.

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. 

A Pained Life: Tyranny of the White Coat

By Carol Levy, PNN Columnist

I saw a new neurologist this past week. He was a lovely man. Unfortunately, I was referred to him in error. He does not treat trigeminal neuralgia, so this was the first and last time I would see him.

That saddened me. Not only because I really took a liking to him, but because he did some things I have seen far too rarely.

He started our appointment by saying, “I have read your history.” Not only that, he had tried to contact my neurosurgeon to find out why I had been referred to him, since he did not treat facial pain. He had gone to the trouble to prepare for the meeting despite knowing he was not the right specialist for me.

Like many doctors, he dictated his notes into a recording device while we were together. From what he said, it was obvious he had read my history and recalled much of it. I was amazed when he would stop and correct himself.

Even more surprising was when he got something wrong and I shook my finger to signal “No.” Immediately he stopped and asked, “What did I get wrong?”

I’d explain the pain was on the left side of my face, not the right, and in the upper part, not lower. He listened and corrected his notes.

Usually most of the docs who do this dictation, ostensibly to make sure they get the information right and have me there to confirm, do not care if what they say is wrong. In fact, my main experience has been docs who say patently wrong information.

For them, I would hold up my finger, shake my head and mouth the words, “That’s wrong.” Invariably, the doctors would shake their heads and silence me with a “Shhhh.” No effort is made to correct or even ask what is wrong with their notes. As a result, the wrong information stays on the record and subsequent docs then approach us with preconceived ideas about things that are not true.

The last pain management doctor I saw decided I had had a history of major depression. He did not ask if I had a psychiatric history or diagnosis but decided this on his own. He did not dictate his notes while I was with him, but I saw it when I went onto the online portal where after-visit summaries are posted.

I thought he must have gotten confused. When he asked me about my family history, I had mentioned a relative who had a diagnosis of depression.

At the next appointment, I asked him to change the record. ““That is not my history,” I said. “You must have been thinking about my relative.” He seemed to agree -- and yet that “history” remains on my official record.

Is it an arrogance that too many docs develop? Is it a hardness, where the patient is almost irrelevant to the entire process? Is it because the patient is not a “professional,” so they can't be trusted even when it is their own history they are giving?

I don't know. I do know that it’s a sad state of affairs when you take a liking to a doctor because they took the rare action of actually listening, hearing and respecting you.

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.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.