Shortage of Primary Care Doctors a ‘Public Health Crisis’

By Lynn Arditi, The Public’s Radio

First, her favorite doctor in Providence, Rhode Island, retired. Then her other doctor at a health center a few miles away left the practice. Now, Piedad Fred has developed a new chronic condition: distrust in the American medical system.

“I don’t know,” she said, her eyes filling with tears. “To go to a doctor that doesn’t know who you are? That doesn’t know what allergies you have, the medicines that make you feel bad? It’s difficult.”

At 71, Fred has never been vaccinated against covid-19. She no longer gets an annual flu shot. And she hasn’t considered whether to be vaccinated against respiratory syncytial virus, or RSV, even though her age and an asthma condition put her at higher risk of severe infection.

“It’s not that I don’t believe in vaccines,” Fred, a Colombian immigrant, said in Spanish at her home last fall. “It’s just that I don’t have faith in doctors.”

The loss of a trusted doctor is never easy, and it’s an experience that is increasingly common.

The stress of the pandemic drove a lot of health care workers to retire or quit. Now, a nationwide shortage of doctors and others who provide primary care is making it hard to find replacements. And as patients are shuffled from one provider to the next, it’s eroding their trust in the health system.

The American Medical Association’s president, Jesse Ehrenfeld, recently called the physician shortage a “public health crisis.”

“It’s an urgent crisis, hitting every corner of this country, urban and rural, with the most direct impact hitting families with high needs and limited means,” Ehrenfeld told reporters in October.

In Fred’s home state of Rhode Island, the percentage of people without a regular source of routine health care increased from 2021 to 2022, though the state’s residents still do better than most Americans.

Hispanic residents and those with less than a high school education are less likely to have a source of routine health care, according to the nonprofit organization Rhode Island Foundation.

Shrinking Workforce

The community health centers known as federally qualified health centers, or FQHCs, are the safety net of last resort, serving the uninsured, the underinsured, and other vulnerable people. There are more than 1,400 community health centers nationwide, and about two-thirds of them lost between 5% and a quarter of their workforce during a six-month period in 2022, according to a report by the National Association of Community Health Centers.

Another 15% of FQHCs reported losing between a quarter and half of their staff. And it’s not just doctors: The most severe shortage, the survey found, was among nurses.

In a domino effect, the shortage of clinicians has placed additional burdens on support staff members such as medical assistants and other unlicensed workers.

Their extra tasks include “sterilizing equipment, keeping more logs, keeping more paperwork, working with larger patient loads,” said Jesse Martin, executive vice president of District 1199 NE of the Service Employees International Union, which represents 29,000 health care workers in Connecticut and Rhode Island.

“When you add that work to the same eight hours’ worth of a day’s work you can’t get everything done,” Martin said.

Last October, scores of SEIU members who work at Providence Community Health Centers, Rhode Island’s largest FQHC, held an informational picket outside the clinics, demanding improvements in staffing, work schedules, and wages.

The marketing and communications director for PCHC, Brett Davey, declined to comment.

Staff discontent has rippled through community health care centers across the country. In Chicago, workers at three health clinics held a two-day strike in November, demanding higher pay, better benefits, and a smaller workload.

Then just before Thanksgiving at Unity Health Care, the largest federally qualified health center in Washington, D.C., doctors and other medical providers voted to unionize. They said they were being pressed to prioritize patient volume over quality of care, leading to job burnout and more staff turnover.

The staffing shortages come as community health centers are caring for more patients. The number of people served by the centers between 2015 and 2022 increased by 24% nationally, and by 32.6% in Rhode Island, according to the Rhode Island Health Center Association, or RIHCA.

“As private practices close or get smaller, we are seeing patient demand go up at the health centers,” said Elena Nicolella, RIHCA’s president and CEO. “Now with the workforce challenges, it’s very difficult to meet that patient demand.”

In Rhode Island, community health centers in 2022 served about 1 in 5 residents, which is more than twice the national average of 1 in 11 people, according to RIHCA.

Job vacancy rates at Rhode Island’s community health centers are 21% for physicians, 18% for physician assistants and nurse practitioners, and 10% for registered nurses, according to six of the state’s eight health centers that responded to a survey conducted by RIHCA for The Public’s Radio, NPR, and KFF Health News.

Pediatricians are also in short supply. Last year, 15 pediatricians left staff positions at the Rhode Island health centers, and seven of them have yet to be replaced.

Research shows that some of the biggest drivers of burnout are workload and job demands.

Community health centers tend to attract clinicians who are mission-driven, said Nelly Burdette, who spent years working in health centers before becoming a senior leader of the nonprofit Care Transformation Collaborative of Rhode Island.

These clinicians often want to give back to the community, she said, and are motivated to practice “a kind of medicine that is maybe less corporate,” and through which they can they develop close relationships with patients and within multigenerational families.

So when workplace pressures make it harder for these clinicians to meet their patients’ needs, they are more likely to burn out, Burdette said.

‘I Can’t Get an Appointment’

When a doctor quits or retires, Carla Martin, a pediatrician and an internist, often gets asked to help. The week before Thanksgiving, she was filling in at two urgent care clinics in Providence.

“We’re seeing a lot of people coming in for things that are really primary care issues, not urgent care issues, just because it’s really hard to get appointments,” Martin said.

One patient recently visited urgent care asking for a refill of her asthma medication. “She said, ‘I ran out of my asthma medicine, I can’t get a hold of my PCP for refill, I keep calling, I can’t get through,’” Martin said.

Stories like that worry Christopher Koller, president of the Milbank Memorial Fund, a nonprofit philanthropy focused on health policy. “When people say, ‘I can’t get an appointment with my doctor,’ that means they don’t have a usual source of care anymore,” Koller said.

Koller points to research showing that having a consistent relationship with a doctor or other primary care clinician is associated with improvements in overall health and fewer emergency room visits.

When that relationship is broken, patients can lose trust in their health care providers.

That’s how it felt to Piedad Fred, the Colombian immigrant who stopped getting vaccinated. Fred used to go to a community health center in Rhode Island, but then accessing care there began to frustrate her.

She described making repeated phone calls for a same-day appointment, only to be told that none were available and that she should try again tomorrow. After one visit, she said, one of her prescriptions never made it to the pharmacy.

And there was another time when she waited 40 minutes in the exam room to consult with a physician assistant — who then said she couldn’t give her a cortisone shot for her knee, as her doctor used to do.

Fred said that she won’t be going back. What will she do the next time she gets sick or injured and needs medical care?

“Well, I’ll be going to a hospital,” she said in Spanish.

But experts warn that more people crowding into hospital emergency rooms will only further strain the health system, and the people who work there.

This article is from a partnership that includes The Public’s Radio, NPR, and KFF Health News, a national newsroom that produces in-depth journalism about health issues.

A Pained Life: Setting the Record Straight

By Carol Levy, PNN Columnist

Decades ago, my pain management doctor suggested that my family doctor write my codeine prescriptions. “Dr. Feld” had no problem doing so.

The last time that I saw Dr. Feld and asked for the prescription, he had me sign the opioid consent form and provide a urine sample. Then he called in the prescription to my pharmacy. No muss, no fuss.

Dr. Feld just retired, so I saw one of the new doctors in the practice. I was there for another reason but asked, “As long as I'm here, can you call in the codeine prescription?”

To my surprise, the new doctor said, “Yes, but I will only give you 30 milligrams, not the 60.”

“Dr. Feld has been giving me 60 milligrams for years.”

“Well, I won't. I'll only give you half the dosage.”

This was the first time the new doctor had seen me, so he knew little about me or my diagnosis. There were no questions about my level of pain, when I took the codeine, or why had I been taking it less often. Nothing. He decided I was going to get less and reality didn't matter. 

This jumping to conclusions seems to be pervasive. I had neuropsychological testing a few weeks ago. I was having some issues with recalling words and wanted to be assured all was well with my cognitive abilities.

When I received a copy of the report, I was upset. The doctor had couched many of the results in his preconceived notions about me, rather than reality. Some of it could have easily been rectified in the follow-up appointment, if he had bothered to ask. He could have asked why I seemed anxious throughout the testing or if I was depressed. Instead, he drew his own conclusions.

Missing from the report was the fact that I had to stop at one point during the test due to the pain. When I told the tester that I needed to take a pain pill, she told me they didn't want me to do that.

So yes, I was anxious for the rest of the test, not because I had anxiety but because I had pain and knew that each additional part of the test could well make the pain worse.

The depression he thought he found was in response to questions about my life circumstances. I checked yes to “Do you feel isolated?” and “I do not go out much.” That is my life circumstance, because of the pain. 

Understandably, many doctors are afraid to give us the opioids we have been on for years or to give us the same dosages. They’re afraid of the FDA. But I am also finding, in my singular experience, that it may be because they just don't care about our circumstances, our pain or the benefits that opioids provide, allowing many of us to have fuller lives.

It is not acceptable when our medical records contain falsehoods that are based on preconceived notions or the laziness of those who examine us.

When I went to the online portal to see my medical records, I noticed the doctor wrote about tests and exams he didn't do. The results for them were patently false, indicating I could do things like move my neck fully, which I am incapable of doing. I contacted him through the portal, telling him what he wrote was wrong. To his credit, he changed it.

At first, I didn't like the idea of a portal and too much personal information being online, even if it was behind a firewall. But now I find it is an excellent instrument for seeing if the doctor, nurse, or tester posted accurate results and if my records contain falsehoods.

We don't have a lot of power when it comes to what is put in our medical records, what is ignored, or flat out wrong. I used to think getting my records when they were on paper was not worth the effort, because there was no way to set the record straight. But now that I can read the reports online, I fell like I have been empowered to correct them.

We must take back as much power as we can. Take a moment and check your medical records. And, if necessary, tell them what they got wrong. 

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 Emergency Room Quandary

By Carol Levy, PNN Columnist

I went to the ER only once because my pain was so out of control. The nurses and the doctor were nice, but mostly I was ignored. After waiting what seemed like hours, a nurse came to my bedside with a needle.

"Hold out your arm," she said and injected me with... something. She didn't say what it was.

The pain was so overwhelming, I didn't ask. Whatever it was, it did nothing, not even make me drowsy.

They kept me there for a few more hours, offering nothing after the injection but a cursory, "Sorry it didn't help you" and "Maybe rest will help."

After another hour or so, I left. They were of no help. They could be of no help.

I used to work as an emergency room ward clerk, the first person people saw when they came in. I would run back to get a doctor or nurse if a patient had one of three complaints: chest pain, symptoms of a kidney stone, or a migraine. Those patients were immediately taken to an exam room.

All the other patients I signed in, then directed them to the waiting room. “Please have a seat and wait for your name to be called,” I’d tell them.

Often, they would sit for hours watching as others who came in were immediately taken to the exam room. I had to repeatedly explain that other patients' complaints were more serious and they had to be seen first.

Some of those waiting patients became angry. They had no clue how many patients were already in the exam rooms, or if the doctors and nurses were dealing with critically injured patients from auto accidents or others with serious health issues.

The ones who came in with complaints of “I have a cold” or “I hurt my finger 3 weeks ago” went to the bottom of the list. So too did those whose main complaint — such as chronic pain — was not of immediate concern. It may have seemed like an emergency to them, but to the ER staff it often isn't. An emergency room can never operate on a first come, first serve basis.

Often, as chronic pain sufferers, we have trouble finding doctors or pain management specialists who are willing to take us as patients. Without a doctor we are vulnerable. When the pain gets too bad or feels uncontrollable, our only alternative may be the ER.

The problem with that is the emergency room is not going to help us much, if at all. They don't know our history. They don't know us. When a patient says they don’t have a doctor and insists on getting opioid pain medication, they immediately become suspect. They might be an addict trying to cadge an opioid.

We are so mired in the “opioid crisis” that it blinds us to the other issues that are harming us. We need to look at all the issues that make us vulnerable. Being able to find a doctor should be high on the list of what we need to fight for.

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.

It’s Not Urgent and They Don’t Care

By Mia Maysack, PNN Columnist

There are no words to convey the extent that I, along with so many others, have endured medical trauma. It’s even more impossible for us to get those who haven't to understand what it's like or the toll that it takes.

A loved one of mine had an injury not too long ago that required a small dose of medical hoop jumping. Just the tip of the broken-healthcare-system-iceberg was enough to leave a lasting impression on them, to the extent they still haven't stopped complaining about it.

But when I attempted to express my own fresh experience with said iceberg, this same person described me as "too sensitive." That is dreadfully inaccurate, especially when you consider I've lived this way for over two decades and they had one adverse experience.

My aim is not to belittle or attempt competitive victimization. I understand how health problems impact us on different levels and in various ways. I simply find the lack of empathy -- yet the simultaneous expectation of it -- to be painfully fascinating.

Within the last few weeks, I've been hospitalized multiple times, essentially back-to-back for the same issue. That's part of what being chronically ill looks like. The difference between these recent visits, as opposed to all the others, is the spite I feel for providers who are supposed to be working for me.

I currently don’t have a primary care provider, so my only option when I have an urgent need is to go to a hospital emergency department. I was in one recently at two o’clock in the morning, freezing on a cot in an isolated exam room.

A nurse came in for the rundown as to why I was there, followed by a brief appearance from a doctor who didn't make eye contact or even face me. He kept his back turned while working on a computer.

The nurse proceeded to speak about me and my situation with Doctor Awesome, as if I was not even there. I interrupted their conversation, because I’ve already endured enough lack of bedside manner and respectfully expressed my concerns and wishes.  I asked for an exam and tests to ensure my medical issue wasn’t progressing, I also needed a prescription to relieve side effects from a medicine I was taking to manage my complications.

After laying all this out in a concise, professional manner, Dr. Awesome finally decides to turn around to face me and dryly asks, “So what brings you in tonight?”

Stunned, I politely responded that I’d previously been to this ER and was advised to return if needed. His reply was that my requests are more of a “clinic thing” and “weren’t necessary.” He then dismissed himself and I did not see him again for the hours I was left alone there. He did not come back to check on me before discharge or bother to report the results of my testing. No one did.

An assistant I hadn’t seen before eventually popped in and provided more warmth than anyone else I’d encountered, just by saying, “Awww, you do not look like you feel very well.” 

I thanked her for the acknowledgement and asked for an exam from anybody who was qualified -- it certainly didn’t need to be Dr. Awesome. She was appalled that I had to ask and left promptly to flag someone down.

So now another person I had never met and who didn’t bother introducing themselves, came in and spent less than a minute with me before they left.

At a different point in my journey, this sort of encounter would’ve completely shattered me, because of how low and how long I’ve been knocked down by those entrusted to aid in healing

Those days are over. Today, I’ll stop at nothing to pursue and obtain what’s in my best interests. Instead of feeling depleted after mistreatment like this, I internalize it as empowerment. I’ve made the decision to give up on them instead of myself, and to continue battling for the sake of my life quality. Even if that means fighting against the harm that they vowed not to inflict in the first place. 

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She 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. 

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. 

Is Your Doctor a Master or Servant?

By Carol Levy, PNN Columnist

Recently, I heard a doctor on TV say something that seems to be common sense: a doctor must be the servant of his patient and not the master. The Hippocratic Oath says as much, that a doctor should be “a servant of people.”

Though the wording is old-fashioned, the point is well taken. I have experienced doctors trying to act as masters, not servants.

I’ll tell a doctor all of my symptoms, only to have her concentrate on one or two. Then she makes her pronouncement: “This is my diagnosis. This is the treatment I am prescribing.”

If I ask, “What about my other symptoms?” I’ll be dismissed.

“Try the treatment and if it’s not better, come back in six weeks.”

There’s no room for discussion. That’s the way a master would talk to a servant.

Some patients think they are the masters. They’ll say, “No you're wrong. I need and will only accept this medication or treatment.”

It seems many chronic pain patients, more so than others, are of two beliefs: we want the doctor to help us, to diagnose our condition and to end our pain to the best of their ability. That makes them somewhat our master.

But many of us also think we should be the master of the doctor when it comes to what he will give us to end our pain: “I want this drug, this dosage, and this number of pills.”'

I almost never hear someone say, “The doctor refuses to give me the test I want” or “She won't refer me to the specialist I want to see.” Pain patients tend to want those decisions left to the doctor.

In recent years, a major loss for doctors is their ability to be their own masters when it comes to prescribing pain medication, specifically opioids.

The best example I have of this is my own experience from decades ago. My ophthalmologist understood that my trigeminal neuralgia pain was unmanageable. He had nothing to offer that would completely eliminate my facial pain, but he wanted to at least mitigate it. He gave me with a prescription for an 8-ounce bottle of Tincture of Opium.

The first pharmacy I went to couldn't fill it because they didn't carry opium. But the pharmacist didn't look askance at me or the prescription. The second pharmacist I saw also gave me no debate, no questions, and no dirty or suspicious looks. Within 10 minutes, I left the pharmacy with a bottle of opium in my purse.

Of course, we all know that could never happen now.  I don't even know if a doctor can write a prescription for opium anymore. It is hard to be a master of the patient when your hands are tied, and you fear losing your livelihood, freedom or both.

When it comes to opioids, we cannot be masters of our doctor, no matter how much we may want to be. We can't insist that we need an opioid, when by law or fear, a doctor won’t comply.

What we need to accept is that neither doctor or patient should be master or servant of the other. Some doctors may not accept this and some patients may not want it, but the best relationship we can have with our medical providers is a partnership.

Doctors need to do a better job explaining why they prescribe something. And, if it is an opioid, why the amount and dosage is less than what we may want.  And we, as patients, need to understand that we can’t insist on what a doctor is unwilling to provide.

For partnerships to work, both sides need to come to a mutual understanding of what can and can't be done. Sometimes that means being disappointed. But disappointment that is based on mutual acceptance and respect can help mitigate the negative, allowing for a much better relationship.

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.

A Pained Life: Let the Words Flow

By Carol Levy, PNN Columnist

I ended my last column with my favorite saying: “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.”

A couple of days later, I thought about the column and my second appointment with a neuro ophthalmologist, a specialist in nerve disorders that affect the eye.

I didn’t know that my parents were still carrying insurance on me, so I was going to a low-fee clinic in New York City, where I lived at the time.  It took almost a year, but finally one of the residents there decided I had trigeminal neuralgia. Even with a name for my condition, they still didn't have a clue what to do for it. Or with me.

When I realized that I could afford to see a private doctor, I returned to one I had seen years ago.  He referred me to the specialist.

The first appointment did not go well. He told me the disabling, horrendous facial and eye pain I had were caused by anxiety. At the end of the appointment, he patted me on the head, handed me a prescription for an anti-anxiety drug, and sent me home.

I was mad. Another "I dunno" exam that ends with a doctor saying, "It's psychosomatic." I debated if I even wanted to keep the second appointment, but what else could I do?  A feeling I think many of us have.

At the next appointment, I repeated my story of how the pain started, what it felt like, and what it was doing to me.  Again, he was unimpressed. He turned away from me, saying nothing.

Then, just to fill the silence, I said "You know, the other day, for a few seconds, I thought the pain was done and gone."

He abruptly turned back towards me. “What made you think that?” he said, the vehemence in his voice surprising me.

“Well, a lady on the bus inadvertently touched the left side of my face, where the pain is,” I explained. “And the pain didn't start. I was so, so happy. Until about 20 seconds later, when the lightning bolts came.”

The doctor walked over to me, and without missing a beat said, “I think it's time we brought you into the hospital.” I was startled and dumbfounded. In the span of a minute, he went from nonchalant to alarmed. I didn't think to ask why.

I was in the hospital for 52 days. After many tests and workups, they decided I should have brain surgery. The surgeon would cut away the numerous tiny little blood vessels that were wrapped around the part of my trigeminal nerve that gives sensation. The surgery only worked for three months, but it was a glorious three months.

Sometimes, it's the minor things: a change in the way pain feels, a new area of pain, or a change in how and when it happens. We may think, why bother the doctor with this? He won't care anyway. It's unimportant. If I tell him, he may think I'm a dolt or making things up. I’ll keep it to myself.

Which brings me to my second favorite saying: “You don't know what you don't know. And if you don't know what you don't know, how will you know if it matters?” 

Sometimes our deciding what a doctor doesn't need to know may be the one thing he needs to know the most. It may really matter. So let the words flow.

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.

Primary Care Providers Still Reluctant to Talk About CBD

By Pat Anson, PNN Editor

Edibles, beverages and other products made with cannabidiol (CBD) went mainstream years ago, as public attitudes about cannabis changed and retailers discovered there was a growing market for CBD products.

The same is not true for primary care providers, according to a new survey that found most doctors are still reluctant to recommend CBD to their patients because of doubts about its safety and effectiveness. CBD is a chemical compound in marijuana that does not produce euphoria, but is believed to reduce pain and improve other health conditions.  

In the online survey of 236 primary care providers (PCPs) affiliated with the Mayo Clinic Healthcare Network in Minnesota, Wisconsin, Florida and Arizona, doctors said CBD was frequently brought up during medical appointments, usually by patients. But those conversations didn’t last long, because most PCPs don’t feel they have enough knowledge about CBD and are skeptical about CBD marketing claims.

PCPs in states where marijuana is legal are more receptive to patients using CBD products, while PCPs in states where marijuana is still illegal are more concerned about CBD’s side effects. But regardless of its legal status, most PCPs believe CBD is ineffective for most conditions for which it is marketed, with chronic non-cancer pain and anxiety/stress being the exceptions.

“Results from this mixed methods study show that PCPs practicing in the U.S. rarely screen for or discuss CBD use with their patients and report several barriers to engage in proactive CBD-focused practice behaviors,” wrote lead author Pravesh Sharma, MD, a pediatric psychiatrist and substance use researcher at Mayo Clinic Health System.

In a second, much smaller study, Sharma and his colleagues conducted interviews with 14 PCPs and found a number of barriers that prevent an open dialogue about CBD, including lack of time, discomfort, low-quality evidence, and CBD being a low priority.

“Our study is the first in-depth report on PCP attitudes, experiences, and practice behaviors related to CBD. The findings of our study have the potential to significantly impact future PCP practice behaviors,” they concluded.

The U.S. market for legal cannabis has grown into a $29.6 billion industry, but not much has changed over the years in terms of its acceptance in the medical community. In a 2020 survey of over 1,000 primary care patients in Vermont, only 18% rated their doctor as a good source of information about cannabis. Nearly half of the patients surveyed had used cannabis in the last year, and most of them thought cannabis was helpful for pain, anxiety, depression, arthritis, sleep and nausea.

The effectiveness of CBD is somewhat murky, because CBD products are poorly regulated and vary so much in dose, quality and whether they also have THC. While CBD may be effective temporarily in relieving pain and other symptoms, some researchers are concerned about its long-term effects on children and adolescents.  

“In fact, although CBD is widely available as an unregulated supplement, we researchers know almost nothing about its effects on the developing brain. Of note, these harms apply not only to smoking, but also to ingesting, vaping or other ways of consuming cannabis or its extracts,” Hilary Marusak, PhD, a psychiatry professor at Wayne State University, said in a recent column.

“In my view, it’s important that consumers know these risks and recognize that not everything claimed in a label is backed by science. So before you pick up that edible or vape pen for stress, anxiety, or sleep or pain control, it’s important to talk to a health care provider about potential risks.”

Unfortunately, asking a doctor may not provide many answers.

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. 

A Pained Life: The Doctor Complex

By Carol Levy, PNN Columnist

The doctor walked into the exam room. He put out his hand and said, “I'm John Smith.”

For some reason, I did something I had never done before and asked, “Do you prefer John or Dr. Smith?”

“Uh, either is okay,” he said, looking a bit befuddled.  

So, I went with “John.” He didn't look happy with my choice, but he accepted it.

Flash forward to another exam room. Another doctor walks in and extends his hand to introduce himself. “I'm George Midas,” he says.

“Do you prefer George or Dr. Midas?” I ask.

He blew out his chest, like a gorilla in the mist. “I went to medical school and I deserve the title of doctor. You may call me Dr. Midas,” he said.

I returned to the first doctor. I never went back to the second one.

I read in medical blogs about how concerned many doctors are because they feel their elite status in the public eye is diminishing. “Doctor” or “physician” is what they are, so that is what they want to be called. Even the sobriquet “provider” is an affront to them. “Provider” makes them sound like nothing more than a businessperson, and that is an insult.

I remember being in the hospital years ago and my neurologist came into my room. He was wearing a sporty pinstriped summer suit. No white coat.

“I like your suit. You look really nice in that,” I said.

“You mean I don't look professional,” was his reply.

No, I didn't mean that. But apparently the white coat makes the man, and the man is more when he is seen as doctor and wears the uniform. Out of it, he becomes just another person doing business with a patient.

It is an odd thing. We don't call lawyers “Attorney Smith” or architects “Architect Michaels.”

You may recall when the Bidens first came into the White House. There was a hue and cry about First Lady Jill Biden calling herself “Dr. Biden” because, after all, she wasn't a medical doctor. She was “merely” a doctor of education.

Yes, it wasn't medical school, but does that mean that her graduate education was “less than” because it was not a medical school?

I hate to tell those who went through the rigors of medical school that doing so was a choice. No one forced them to become a doctor. And going through what may be the hardest of all graduate studies does not make them better than anyone else.

I will gladly call you “doctor” if that is the only option you give me. But don't confuse the use of your title with me being less elite than you are. Because that is one thing I am not.

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 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.”

A Pained Life: Do You Know the Magic Words?

By Carol Levy, PNN Columnist

My chronic pain started with a spontaneous, horrific and sharp pain, like a blade slicing through my left temple. Within two weeks, I was disabled by it. Almost everything triggered the pain, even the tiniest wisp of hair or whisper of a breeze.

I was 26 at the time. I could only afford to go to a local hospital clinic. No matter which doctor saw me or their specialty, no one could figure it out.

Then I started dating Scott, one of the ophthalmology residents. On our date, Scott kept trying to touch the left side of my face. I kept pulling away.

“Where shouldn’t I touch you?” he asked.

I mapped out the area on the left side of my face, from my scalp down to my cheek. The exact same area I indicated at all of my clinic visits. Scott looked shocked.

“I know what you have. You have trigeminal neuralgia,” he said.

I knew of the horrors of this pain. I didn't want this diagnosis. But at least now I had a name for it.

Fast forward to when I could afford a private doctor. I went to see a neuro-ophthalmologist and told him my story. Feeling anxious and afraid, I related it in a manner that may not have been very coherent as it might otherwise have been.

“Don’t be so schizophrenic,” the doctor said. “Tell me what happened more clearly.”

He decided I was “anxious” and that was probably the cause of my pain. He told me to come back in three months and see if anything had changed by then.

I didn’t want to go back, but what choice did I have? It turned out to be a very good decision.  It was at this appointment I learned that “magic words” exist in the medical world.

“Is the pain the same?” the doctor asked. When I said yes, he said to come back in another three months.

I was walking to the door when a thought hit me. “You know for a few seconds today I thought it was finally over,” I said. He immediately perked up

“What made you think that?” he asked.

I was on the train and a lady had brushed against my face. And the pain didn’t come right away. I was happy for abuut 20 seconds, when the pain hit me like a sucker punch.

“It’s time we brought you into the hospital,” the doctor said. “We need to do some tests.”

I had no way of knowing, but I had uttered the magic words. Unbeknownst to me, that specific change was a distinct sign of trigeminal neuralgia. 

How many times have we gone to the doctor and gotten the “I dunno” or “I don’t understand your complaint” answer? 

I have a feeling for many of our disorders there are magic words like “abracadabra” or “open sesame” that change the way doctors see us. The sad part is there is no good way to figure them out. Do too much research and you may get labeled a hypochondriac. Do none and you'll never know the secret words. Is there a middle ground? 

It reminds me of the fairy tale Rumpelstiltskin, about an imp who spins straw into gold in exchange for a girl's firstborn child. If the girl guesses his name within three days, she could keep her baby. She does, and Rumpelstiltskin goes away. 

For many of us, if we guess the right words, we get the right tests, the right diagnosis and maybe even the right treatment. If only it wasn’t a fairy tale.

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.

A Matter of Interpretation

By Carol Levy, PNN Columnist

I recently read a post in one of the online chronic pain support groups. “Sue” had just left an appointment with her pain management doctor. She was enraged, so angry about the way the meeting had gone, that she went right to her computer and complained about it.  

“My doctor asked, ‘What do you think about my lowering the pain meds you're on?’” Sue wrote.

“How dare he reduce them!” was her response. Sue said the medications were helping her and the doctor had some nerve to ask. All these doctors want to do is hurt us, she wrote, and if it wasn't for the CDC and FDA, this wouldn’t be happening.

I read her post and was somewhat confounded by her anger. She did not include any information on how the meeting ended. Did he lower her dosage or the number of pills? I could see how upset that would make someone, especially if the drugs were helping.

But he didn't say, “I am going to lower the level of opiates I am giving you.” He said it in a way that seemed, to me, like he meant to open a discussion.

It reminded me of a difficult crossword puzzle I had just completed. It was so frustrating. I had it all done, but for one four-letter word. The clue was “wind.” All I could think of was “blow,” as in the wind blowing, but the letters didn’t fit.

There was a “C” for the first letter but I could not think of one word that started with “C” that fit the clue. No matter what letters I tried, I could not think of any other answer but “blow.”

Finally, I was able to figure out the word. The answer was “coil.”  

“Coil,” I thought. “Oh, for goodness’ sake.”

I was so obsessed with my one interpretation, it never occurred to me to consider another. It wasn't wind, as in the wind blows. It was wind, as in winding a clock or a windy road.

I think we do this often, and not just with medical people. They make a statement or ask a question that seems clear. But to the listener it carries a whole different meaning.

It’s harder when you're right there. Reading about it online made it easier for me to see it as the doctor asking, not demanding or insisting. In the heat of the moment, it may well sound like, “I'm not going to help you anymore. I'm stopping the drugs that have been helping you.”

There are crosswords and cross words. Sometimes we have to stop, take a deep breath, and instead of responding with angry or impulsive words, ask for an explanation.

“Are you asking me about lowering my meds or are you telling me you will?”

 If it’s the latter, it may well be the time to be upset. If it’s the former, it’s time to open the discussion.

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.”