A Patient–Provider Playbook to Improve Diagnosis of Autoimmune Diseases

By Tara Bruner

Millions of people across the United States experience joint pain, fatigue, or stiffness. These symptoms are commonly associated with autoimmune diseases such as rheumatoid arthritis (RA), which affect about 4.6% of the U.S. population. Diagnosing autoimmune conditions remains difficult, with studies indicating that up to 76% of patients receive at least one incorrect diagnosis before the underlying cause is identified.

Such delays in diagnosis can be frustrating and take a toll on both physical and mental health. Delays can also result in significant harm, as conditions like RA may cause irreversible joint damage if not treated promptly. However, advances in diagnostic technology and increased patient engagement are beginning to improve outcomes.

Why Rheumatic Diseases Are Hard to Diagnose

Rheumatic diseases include autoimmune and inflammatory disorders affecting the joints, muscles, tendons, and ligaments. Their early signs frequently resemble common health issues, such as the natural effects of aging, everyday stress, or minor aches and pains. This overlap often leads to the misdiagnosis of symptoms, complicating early detection. Autoimmune diseases don’t follow a script – and vague, shifting symptoms often defy simple explanations.

RA is also frequently confused with other conditions, including osteoarthritis, fibromyalgia, and depression. Research shows that about 20% of patients diagnosed with RA initially receive an incorrect diagnosis. On average, the interval between symptom onset and accurate diagnosis spans about 12 months or longer.

Limited access to rheumatology specialists, particularly in rural or underserved areas, can further delay evaluation. Primary care providers may initially adopt a conservative approach to treatment, recommending rest or symptomatic treatment before pursuing advanced diagnostics. This inadvertently extends the diagnostic timeline.

Collectively, these factors result in many patients being undiagnosed or misdiagnosed for extended periods, during which ongoing inflammation may cause progressive and potentially irreversible joint damage.

The Role of Early Testing

Selecting the right diagnostic test at the right time is crucial to shortening the often lengthy and frustrating journey toward an accurate diagnosis. Fortunately, recent advances in testing have expanded the tools available to healthcare provider, but a timely diagnosis still hinges on informed, collaborative discussions between patients and providers.

A productive clinical visit begins with patients clearly sharing their symptom history. This includes when symptoms began, their frequency, severity, morning stiffness, flare-up patterns, and any noticeable changes over time.

This firsthand context from patients helps providers determine which tests are most appropriate, such as those for rheumatoid factor (RF); anti-cyclic citrullinated peptide (anti-CCP) antibodies; and Inflammatory markers like C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR).

Tests such as Thermo Fisher’s EliA™ autoimmunity assays provide clinicians with extra insight to support more precise diagnoses and can help tailor treatment recommendations. The assays monitor a wide range of autoimmune diseases by detecting and measuring antibodies in a patient's blood. These tests can aid in the diagnosis of conditions like RA, celiac disease, and thyroid disorders.

Providers should explain to patients what each test measures, what the results might indicate, and how those results will shape the treatment plan. Patients should be encouraged to ask questions about the purpose and limitations of testing, as well as next steps – whether that’s additional tests, follow-up appointments, or referrals to specialists like rheumatologists.

Because autoimmune diseases often present with vague or overlapping symptoms, test results alone may not be definitive. That’s why providers rely heavily on patient-reported symptom changes, triggers, and how those symptoms affect everyday life --- general insights that can help uncover patterns lab results might miss.

It’s important to note that even when test results rule out certain conditions, that information is still considered valuable. It narrows the diagnostic focus and helps maintain momentum toward finding answers. When there are cases of uncertainty or slow progress, seeking a second opinion is reasonable and sometimes essential.

Ultimately, effective diagnosis is a joint effort: patients contribute lived experience, while providers bring clinical expertise. This shared decision-making builds trust, accelerates diagnosis, and leads to earlier, more targeted treatment, which improves both short- and long-term outcomes.

Women Face Greater Diagnostic Delays

RA disproportionately affects women, who constitute nearly 80% of all cases. Despite this high prevalence, women are significantly more likely to be misdiagnosed or experience delays in receiving appropriate care. In fact, a study examining healthcare misdiagnoses  found that approximately two-thirds of those who reported being misdiagnosed were women, highlighting a systemic issue of diagnostic disparities.

The typical symptoms of fatigue, joint pain, and general discomfort are frequently dismissed in women or attributed to stress or hormonal changes, rather than recognized as signs of an underlying autoimmune condition. Hormonal fluctuations, particularly during childbearing years, can mask or mimic autoimmune symptoms, making timely diagnosis even more challenging.

These diagnostic delays can lead to serious consequences for women, including permanent joint damage, decreased mobility, and long-term physical impairment. Emotional distress caused by being dismissed or misunderstood exacerbates the overall disease burden and negatively impacts quality of life. Delays often result in the need for more intensive and costly treatments.

Recognizing and validating unexplained symptoms in women is crucial for a timely diagnosis and appropriate intervention, ultimately improving outcomes.

Advocating for Patients as Partners in Diagnosis

An accurate diagnosis doesn’t happen through testing alone. It requires patients to speak up, track patterns, push for clarity, and challenge delays.

Patients are not passive participants in their care. They are the key to faster, more accurate diagnoses. By documenting symptoms, asking hard questions, and refusing to accept vague answers, patients can help uncover critical insights that standard labs don’t reveal.

What changes outcomes is a patient who actively engages, and a provider who listens to them without bias or assumptions. Together, they form a partnership that prioritizes answers over assumptions and action over wait-and-see.

Clear communication, persistent advocacy, and a refusal to be dismissed – these are not optional. They are the foundation of faster diagnoses and better care.

The process to achieve faster autoimmune diagnosis requires patients to receive proactive primary care tests and to maintain open dialogue with their doctors.

The patient's personal understanding of their medical experience should receive equal recognition as well. The active involvement of patients, combined with advanced diagnostics, will enhances rheumatic disease treatment and produce superior long-term results.

Tara Bruner is a Physician Associate and Manager of Clinical Education for Thermo Fisher Scientific.

Rx Opioids Are Not a Cure… and Neither Is Anything Else

By Neen Monty

They deliver it like it’s some kind of mic drop.

“Opioids are not a cure,” they say.

But here’s the important thing: Almost nothing in medicine is a cure.

Insulin doesn’t cure diabetes. But it keeps people alive.

Methotrexate and Xeljanz don’t cure rheumatoid arthritis. They slow down disease progression though.

Intravenous immunoglobulin is not a cure for Chronic Inflammatory Demyelinating Polyneuropathy. But it slows down the demyelination of my nerves.

Prednisone is not a cure for autoimmune disease. But it reduces inflammation, which improves pain and quality of life.

Anti-inflammatories do not cure inflammatory arthritis, but they decrease pain, increase function and improve quality of life.

Metformin, thyroxine, even chemotherapy in many cases… none are cures.

They manage symptoms, reduce harm, and improve quality of life.

That’s medicine’s job.

Medicine is not purely about curing disease. In fact, it’s rarely about curing disease. That does not mean that all the wonderful things that medicine can do are worthless.

So why is pain relief held to a higher standard than every other kind of treatment?

Why are opioids dismissed simply because they don’t cure the underlying disease that causes the pain?

Pain relief is not a moral failing. It’s medicine doing what it’s meant to do: Alleviate suffering and restore function.

That’s what opioids do. Alleviate suffering, restore function and improve quality of life. Those are good things.

If you can move again, sleep again, think clearly again, participate in life again, isn’t that a good thing?

But no. Dismiss opioids because they’re not a cure.

Such a stupid point of view.

Now that we’ve shown that chronic pain patients hardly ever become addicted or overdose on their pain medication, people are really reaching for reasons to demonize opioids. Saying that opioids are not a cure is reaching pretty hard.

Opioids reduce pain temporarily. I am under no illusions. And I do wish there was a cure for my diseases. I really do. But there is no cure. There is only palliative treatment -- with opioids.

And so many people would like to take that pain relief away from me. People who have never experienced severe pain at 1am. So severe that sleep is impossible. So constant that it happens every night. And all day, every day.

Except for the few hours when I have pain medication to reduce that pain – while not curing it.

Opioids don’t cure pain any more than insulin cures diabetes. They treat a symptom. A devastating symptom – severe pain - that profoundly affects function and quality of life.

Reducing that pain, even temporarily, is not a failure.

That’s a treatment working.

It’s the best treatment we’ve got for severe pain, acute or chronic.

To say “opioids are not a cure” is to fundamentally misunderstand what they’re for.

You know, those glasses you wear won’t cure your shortsightedness. Let’s take your glasses away. They’re not a cure!

That wheelchair won’t cure paralysis. You don’t need a wheelchair.

We don’t apply this logic to any other condition or treatment. Only pain. Only opioids.

We don’t tell people with heart failure to throw away their meds because they don’t “fix” the heart.

We don’t tell people with asthma to stop their inhalers because they don’t “cure” the lungs.

We treat to relieve symptoms, to restore life and dignity, because that’s the ethical duty of medicine.

Relief of suffering is an outcome. Improved function is an outcome. But a cure is wishful thinking.

So the next time someone says, “Opioids are not a cure,” remember that neither is anything else we use to keep people alive, moving, and human.

And that’s okay. Because that’s the best we can do, in many situations.

Because the goal of medicine isn’t always to cure. It’s to care.

Neen Monty is a patient advocate in Australia who lives with rheumatoid arthritis and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a progressive neurological disease that attacks the nerves.

Neen is dedicated to challenging misinformation and promoting access to safe, effective pain relief. She has created a website for Pain Patient Advocacy Australia to show that prescription opioids can be safe and effective, even when taken long term. You can subscribe to Neen’s free newsletter on Substack, “Arthritic Chick on Chronic Pain.”

Cutting Off SNAP Benefits Will Hurt People With Chronic Pain

By Crystal Lindell

The only thing worse than chronic pain is chronic pain with hunger. 

But that’s exactly the situation we are about to plunge millions of Americans into if SNAP benefits don’t go out in November. 

The food stamp program — more formally called the Supplemental Nutrition Assistance Program (SNAP) — provides money for groceries to those with a low income. And it looks to be one of the many casualties of the current federal government shutdown. 

The U.S. Department of Agriculture confirmed this week that they will not use emergency funds to cover November disbursements. So unless the government reopens or the Trump administration changes its mind, about 42 million low-income people won’t have enough money to buy all the food they need. 

And make no mistake, cutting off SNAP benefits in November will hurt people with chronic pain. While most people might not connect food aid with chronic pain, there is a significant overlap.

According to the CDC, over half of disabled Americans (52.4%) have chronic pain, while the most recent USDA data show that nearly four in five (79%) SNAP households includes a child or adult with a disability. Those households receive 83% of SNAP benefits.

But the statistics don’t tell the full story. There are many people who are in too much pain to work full-time jobs that would pay enough to cover their household expenses — yet they are not disabled enough to qualify as fully “disabled” by government standards.

Those people often rely on government programs like SNAP to make ends meet. 

There are a lot of people who think that too many people get SNAP, and that cutting off benefits or adopting tougher work requirements will cause a needed reset. 

But my experience is that not enough people get SNAP. In fact, I would support expanding the program to help as many “disabled but not technically disabled” people as possible. 

The number one thing I hear people say when they complain about programs like SNAP is essentially: “It’s not fair. I need it and don’t get it. Therefore fewer people should get it.”

But in reality, the conclusion should be the opposite. If you need a government aid program and can’t get it, the solution should be to expand access to that program – not to cut the program off for others. 

The average SNAP recipient gets $177 per month in food aid. Would you be able to buy enough food to survive on less than $6 a day?

I also worry that if SNAP benefits end next month, they might not ever go out again. Once you upend a social program, it’s easy to continue on that path. 

I believe it’s a sign of our deep cultural rot that cutting off SNAP is even a possibility. It’s telling that an anonymous donor volunteered to give the government $130 million dollars to fund military pay during the shutdown, but no such donor has appeared to contribute to SNAP aid. 

Our priorities have skewed so far in the wrong direction, that we now spend billions on the military to protect citizens we can’t even feed. What is even the point of that?

My hope is that society will prove me wrong – and that the moral rot I fear is still fresh enough to be hacked off. Push back from voters and advocacy groups could pressure the government to find a way to go forward with the November SNAP disbursement. 

Only time will tell whether America still values feeding people as much as it claims to want to protect them. 

Government Shutdown Highlights Absurd Cost of Health Insurance

By Crystal Lindell

Health insurance has gotten so expensive that it almost makes sense to ask, “Is it worth the price?”

Insurance is sold to consumers through a “worst-case scenario” framework. Companies tell people they have to have health insurance or risk disaster.

“What if you suddenly need millions of dollars in ICU care? You need to have our health insurance to pay that bill!” is how they frame it.

Naturally, the insurance companies follow that up with, “If we are saving you millions of dollars in medical expenses, then tens of thousands of dollars for your policy is actually quite a bargain, right?”

“Tens of thousands of dollars” might seem like an exaggeration if you haven’t been paying close attention to health insurance prices lately, but it’s not.

According to data recently released by KFF, a health policy nonprofit, family premiums for employer-sponsored health insurance reached an average of $26,993 this year.

Their data shows that workers pay $6,850 of that out of their own paychecks. As such, that’s the price most people associate with their plans.

But in reality, employees are paying the full $26,993, because every penny that companies spend on your health insurance is a penny that could be in your paycheck instead. Hiding those costs behind “employer contributions” is just a neat trick insurance companies use to hide the real price you’re paying.

And if you’re buying insurance on the Affordable Care Act (ACA) marketplace, then the real cost of your plan is hidden in a different way: behind federal subsidies. Some of those subsidies will expire at the end of the year, and it’s forcing people to confront just how expensive insurance has gotten. 

The ACA subsidies are at the heart of why our federal government is currently shut down. Democrats want them to continue, and Republicans do not.

The potentially devastating effects of ending them for the 24 million people currently enrolled through the ACA are becoming apparent. Open enrollment for 2026 coverage begins Nov.1, and people have to make their decisions soon.

The Washington State Standard reports that individual insurance in that state bought through the ACA are set to rise an average of 21% next year. 

As of now, the subsidies save ACA enrollees an average of $1,330 per year, according to Washington Gov. Bob Ferguson’s office. For seniors, those savings jump to more than $1,900 annually.

Going Without Coverage

NBC News reports that some people are planning to forego health insurance, rather than pay higher prices. They shared the story of Arkansas residents Ginny Murray and her husband, Chaz. The couple plans to drop coverage and pay out of their own pocket if an unexpected illness strikes.

“Our plan is to keep putting the money we’re already paying towards health care in savings,” Ginny explained. “And really just hoping that we don’t have a stroke or we don’t have a heart attack.”

It’s a plan I myself adopted years ago after getting laid off and deciding to make a go of it as a freelancer who does odds and ends on the side to survive. When I tried to look into health insurance plans, I quickly realized that it was much cheaper to just pay cash out of pocket for my doctor appointments and prescriptions.

Especially since even if I pay for insurance, deductibles and co-pays mean I could still end up with thousands of dollars of medical debt. 

Yes, I live under the constant fear that I will be one of the people that health insurance companies warn about. That someday I will find myself in the ICU in need of millions of dollars of care that I can’t pay for.

But it’s a risk I have to take at this stage of my life because I just cannot afford to buy my own health insurance, even with the ACA subsidies. 

Last I checked, I did not qualify for Medicaid, although that too brings its own set of problems. Currently my primary care doctor is across the state line at the closest university hospital to my house. He’s well equipped to handle the chronic, complex health problems that I face But if I got onto Medicaid in my state, I may not be able to see him anymore.

Mine is just one story among millions who are trying to figure out how to pay for their health care under a private health insurance system where companies have every incentive to raise prices to eternal heights.

That’s why, in reality, we should be striving for more than just some ACA subsidies for health insurance. Medical expenses and health insurance costs should not constantly loom over people’s heads. 

We could be implementing universal Medicare at the very least. A program like Medicare for All would be life changing for me. I’m sick, but not sick enough for disability. And since I am only 42, I can’t get Medicare yet.

It doesn’t have to be that way. What if I could get the same health insurance my grandma has? Why do I have to wait until I’m 65 to do that? Why is 65 the arbitrary number?

Other developed countries have better alternatives, such as universal healthcare coverage, than the current U.S. system. We should have better access to health insurance too – or at least something more affordable.

Does Having Chronic Pain Mean I’ll Die Young?

By Crystal Lindell

This morning I got news that someone I knew had passed away.

I describe him as “someone I knew” because my connection to Rich is difficult to explain. He was my fiancé’s, late-mom’s, long-time boyfriend. Basically, my step-father-in-law. Ish.

After battling a bad cold, which may or may not have been COVID, he had an aneurysm and then spent a couple weeks in the ICU before passing away last night.

It’s the kind of news that’s both expected and painfully shocking.

He was too young. Just 58 years old. But his short life had been hard on him and his body. He had spent years doing manual labor and treating his pain with multiple types of medications. 

So, in retrospect, if you had asked me for a prediction, I would have told you that I never expected Rich to live to see old age.

But I didn’t really expect him to die at 58 either.

Since 2020, nine people I knew have died. Two long-time friends, my cousin, my dad, my aunt, my step-dad, my fiancé’s mom, my former boss, and now, Rich.

My fiancé Chris and I got engaged in December 2020 and he’s still my “fiancé” in large part because the onslaught of death seemed to freeze my brain in such a way that made it impossible to plan a wedding.

And now, a quarter of our would-be guest list is dead.

Many of the dead were very young. My age. All of them were too young. None of them made it to their 70s.

I can’t help but consider my own mortality. And it’s made me realize something I had been trying to avoid: People who develop severe chronic pain at 29, like I did, often don’t live long enough to be considered old. And when they do, they are the exception to the rule.

Even if the pain itself isn’t terminal, everything else will surely have an easier time taking me out. It’s not like I’m in peak disease-fighting shape. 

Not to mention all the damage that taking pills for breakfast every morning must be doing to my organs.  

The thing about the kind of nebulous chronic pain that I have is that I never got to have one of those movie-scene conversations in a doctor’s office where they clearly explain how dire my situation is. I suspect those conversations are reserved for illnesses that show up on blood work and CT Scans.

My pain has always been something only I could feel, and nobody else could see or test.

As such, my doctors have always been some mix of hopeful and dismissive about my ailment. They’d tell me that maybe I’d magically get better one day, while also telling me that they couldn’t find anything wrong with my ribs. 

And none of them have ever spoken directly to me about the many ways that chronic pain and my eventual diagnosis with Ehler-Danlos Syndrome might shorten my life expectancy. Technically, neither one is supposed to on its own. 

That doesn’t mean they can’t though. And I suspect the doctors know this, given the fact that they are willing to prescribe me the kind of opioid regime most people don’t ever go off of.

These days, I’m known among my loved ones as having “a lot of health issues,” while among my acquaintances I’m known as “the one who writes about her chronic pain online.”

So someday, when they all get the news of my death, I’m sure none of them will be too shocked. People aren’t surprised when someone like me, with a rare disease that causes chronic pain, dies young. They’re surprised when we don’t.

There was a time, in my early days with chronic pain, when I prayed for death. A time when I could not imagine spending years of my life with stabbing rib pain.

But over the years I came to accept it, and learned to manage it as much as medication would allow.

I’m 42 now, and a few years ago I started letting my gray roots grow out. 

After being surrounded by so much death, I saw them now as my silver trophy. My prize for making it to my 40s — a privilege that some of my late friends never got to experience.

How lucky am I to have lived long enough to have gray hair?

How lucky am I to be old enough for wrinkles? To have reached the age where I’m now slowly losing my ability to read small print? To be alive to complain about how hard it is to stand up, now that my body is aging.

How fortunate am I? How fantastic for me.

I can only hope that I make it much, much longer. Maybe another 42 years, if I’m truly lucky. But if not, I have faced my own mortality. I can see clearly just how fragile it is. And I’m okay with that.

I will spend my days baking, caring for loved ones, and writing. I will focus on all the things I would be focused on if I had ever gotten to have one of those somber doctor office conversations about my health. All the things that everyone realizes truly matter in life — right when they are about to run out of life themselves.

So even if I’m not OK, I will be OK.

Where Pain Research Is Headed and Why I’m Hopeful

By Dr. Lynn Webster

If you live with pain, you’ve probably heard promises that “something better is coming.” At this month’s Pain Therapeutics Summit in San Diego, you could see that promise taking shape. For two days, clinicians, scientists, companies and advocates compared notes on what’s working, what’s not, and what’s next.

Threaded through much of it was the National Institutes of Health’s Helping to End Addiction Long-Term (HEAL) Initiative -- an NIH-wide push launched in 2018 to accelerate better pain care and reduce opioid-related harms.

HEAL exists because of the opioid crisis; Congress gave NIH an initial $500 million in fiscal year 2018 to jump-start a coordinated research plan, and the NIH has since invested several billion dollars to keep the effort moving. In other words, HEAL is a rare silver lining: a tragedy spurring a sustained, practical response.

(The HEAL Initiative was not directly hit by any funding cuts in 2025. However, the Trump administration has proposed cutting the NIH budget by 40% next year, which could potentially impact HEAL funding.)

Since its launch, HEAL has grown into a national engine for discovery. NIH reports a cumulative investment approaching $4 billion, supporting more than 2,000 projects across all 50 states, and helping advance 40-plus new drugs and devices to FDA investigational status.

This is a sign that the pipeline is broader and closer to patients than it has been in years. Think of HEAL as scaffolding: trial networks, shared data standards, and coordinated teams that help good ideas climb faster from lab to bedside.

A decade ago, analgesic research often looked like isolated bets. Today, it feels more like a coordinated campaign. That doesn’t guarantee success, but it raises the odds that something useful will reach doctors and patients.

Just as important, what’s coming isn’t a single “miracle drug” but a wider toolkit. You’ll see more non-opioid medicines designed around the biology of different pain types; safer use of existing tools that can lower the need for higher doses when opioids are used; devices and neuromodulation approaches that calm overactive nerves or brain circuits; smarter drug delivery systems that make treatments last longer or act locally at lower doses; and digital health that captures how people actually live -- including their sleep, activity, and pain flares -- so that care decisions track real life, not just clinic visits.

The studies themselves are changing, too. Many people don’t have just one pain condition; they have overlapping problems. Newer trials are beginning to mirror that reality and to focus on outcomes you can actually experience -- walking farther, sleeping better, and participating more in life -- rather than only chasing a number on a pain scale.

Researchers are also building better signposts, such as biomarkers and other objective measures, to predict who will benefit from which therapy and who may be at risk of long-term pain after injury or surgery.

Signposts aren’t a substitute for what people tell us about their pain. In research and development, objective measures help compare treatments and identify who is most likely to benefit. Once a therapy reaches the clinic, those measures become guides, not verdicts, and should be read alongside the patient’s narrative so that care reflects how the person actually lives and feels.

HEAL has made these shifts a priority by funding large, practical datasets and endpoints that regulators and payers can use.

Here’s the clear-eyed part: many of the drugs and devices discussed at meetings like this will not make it past the investigational stage. That’s how science works. But when trials are well designed and data are shared, today’s misses can more quickly lead to tomorrow’s wins -- and the lessons won’t vanish into a file drawer.

Some analgesic candidates will cross the finish line, and even modest gains -- better sleep, fewer flares, less brain fog, or an extra hour of activity -- can change a life. Across millions of people, small wins add up to something transformative.

What does this mean if you’re living with pain right now? Expect more choices and more personalization. Conversations with your clinician may start to include options that didn’t exist a few years ago, and you may hear about clinical studies built around everyday life rather than rigid clinic schedules. If a trial is a good fit, participating in one will help move the field forward.

Most of all, there’s a reason for hope that is grounded in real progress, not hype.

None of this happened by accident. The NIH HEAL Initiative has been the engine behind much of it -- steady funding, coordination, and a focus on solutions that reach the bedside. Keeping that engine running is how promising ideas become practical relief.

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.

Dr. Webster 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.

5 Ways to Support a Loved One With Chronic Pain

By Crystal Lindell

Recently I wrote that one of the most important things you need to enjoy life with chronic pain is supportive loved ones.

But what does that look like in practice?

Below are some tips on how to realistically help loved ones who deal with chronic pain.

And if you’re the person in pain reading this, perhaps you can pass this on to your friends, family and other loved ones. Afterall, sometimes getting advice from a third party can help it land better.

Also, of course, if you have your own tips to share, we’d love to read them in the comments!

1. Keep in Touch With Them

If you care about someone with pain, maybe the most important thing you can do is to just stay in contact with them.

Having chronic pain makes it difficult to attend in-person events, but that doesn’t mean we lose the need for human connection. In fact, it just makes that need much stronger.

Sometimes friends fall off because they don’t see you as often, but other times it’s because they don’t want to have to talk to someone with chronic health issues. Those conversations can force them to face the fact that their own body is also fragile and mortal.

But if you actually care about someone, I encourage you to push past all that.

Texting and phone calls can be a lifeline for people with chronic pain — as can in-person visits.

Your interactions with them may be the majority of human interaction they have, and it can be enough to keep them going for another day.

2. Give Them Meals and Help with Chores

When I first started having chronic pain, one of my friends did one of the nicest things anyone has ever done for me – either before or since. She drove 2 hours to come visit me and then cleaned my entire apartment, including the bathroom.

It is not possible to express how grateful I was and how much of a difference that made in my ability to keep going through one of the darkest times in my life. Just having a clean space to exist was like having a weight lifted off my very painful ribs.

While healthy people can take for granted the ability to do daily household tasks like cooking meals and doing the dishes — a person with chronic pain knows how easy it is to fall behind on those things.

And when that happens, on top of the stress of dealing with a broken body, you also have to deal with a messy house. That can come with a lot of guilt and even physical discomfort.  

So, if you’re able to help them with housework in any capacity, that can also lift a truly heavy burden.

Having someone make or drop off meals once a week, or even once a month can also be a massive help. There’s also the option of sending meals with services like DoorDash or Uber Eats, or giving them food delivery gift cards.

It may seem like cooking and cleaning for someone is no big deal, but when you do it for someone with chronic pain, it can be as helpful as the best medication.

3. Don’t Be Offended If Someone Needs Rest

I need more sleep than the average person, I assume because my body is using so much energy to just exist with chronic pain. I also need more time to recover after big events like parties.

It can mean that I can’t respond to calls or text, and that I need a lot of time alone to sleep and rest.

But even my most well-meaning loved ones can take this need for rest as some sort of indictment — as though I just don’t want to be around them or to interact with them.

It’s not about them though, it’s about me and my defective body.

If someone you love has chronic pain and they need a nap, or a couple days to respond to a text, don’t take it personally. It probably just means they needed some extra rest.

4. Go to Doctor’s Appointments With Them

Chronic pain can make it more important than ever to have productive doctor appointments — but it can also make that task more difficult.

That’s why having a loved one attending doctor’s appointments with you is truly invaluable.

A second person being there to focus on what the doctor is saying and to ask questions on your behalf can mean the difference between finding treatments that actually work or not.

It also usually makes doctors take a patient more seriously when they know that a loved one is keeping tabs and will be holding them to account for their treatment outcomes.

So, if you’re able to go to doctor appointments with your loved one with chronic pain, I highly recommend doing so.  

5.  Be Accepting of their Use of Pain Medications

A lot of people face stigma for using pain medications, especially opioids.

But oftentimes, pain medication can become a point of friction between patients and loved ones, who don’t fully understand the importance of alleviating chronic pain.

Other people’s pain is always easy to endure, so it’s always easy to tell someone else that they don’t need to treat their pain.

While loved ones who say such things are usually well-meaning, those conversations can cause a lot of unnecessary stress for people in pain.

It’s best just to assume that if someone is using pain medication, then they need that pain medication.  

In the end, the best advice for supporting a loved one with chronic pain is to treat them how they want to be treated. And to accept that whatever they are going through is at least as bad as they are describing.

When you approach help from that mindset, you’ll often naturally find the best ways to support them.

Having support from loved ones can mean the difference between being able to endure a life with chronic pain or not. It’s just as important for their health as a good doctor is, and it can have just as much impact. 

It’s a Bird! It’s a Plane! It’s a Chemtrail? New Conspiracy Theory Takes Wing at HHS

By Stephanie Armour

While plowing a wheat field in rural Washington state in the 1990s, William Wallace spotted a gray plane overhead that he believed was releasing chemicals to make him sick. The rancher began to suspect that all white vapor trails from aircraft might be dangerous.

He shared his concern with reporters, acknowledging it sounded a little like “The X Files,” a science fiction television show.

Academics cite Wallace’s story as one of the catalysts behind a fringe concept that has spread among adherents to the Make America Healthy Again, or MAHA, movement and is gaining traction at the highest levels of the federal government. Its treatment as a serious issue underscores that under President Donald Trump, unscientific ideas have unusual power to take hold and shape public health policy.

The concept posits that airplane vapor trails, or contrails, are really “chemtrails” containing toxic substances that poison people and the terrain. Another version alleges planes or devices are being deployed by the federal government, private companies, or researchers to trigger big weather changes, such as hurricanes, or to alter the Earth’s climate, emitting hazardous chemicals in the process.

Several GOP lawmakers and leaders in the Trump administration remain convinced the concepts are legitimate, though scientists have sought to discredit such claims.

Health and Human Services Secretary Robert F. Kennedy Jr. is planning to investigate climate and weather control, and is expected to create a task force that will recommend possible federal action, according to a former agency official, an internal agency memo obtained by KFF Health News, and a consultant who helped with the memo.

The plans, along with comments by top GOP lawmakers, show how rumors and conspiracy theories can gain an air of legitimacy due to social media and a political climate infused with falsehoods, some political scientists and researchers say.

“When we have low access to information or low trust in our sources of information, a lot of times we turn to our peer groups, the groups we are members of and we define ourselves by,” said Timothy Tangherlini, a folklorist and professor of information at the University of California-Berkeley. He added that the government’s investigation of conspiracy theories “gives the impression of having some authoritative element.”

HHS is expected to appoint a special government employee to investigate climate and weather control, according to Gray Delany, former head of the agency’s MAHA agenda, who said he drafted the memo. The agency has interviewed applicants to lead a “chemtrails” task force, said Jim Lee, a blogger focused on weather and climate who Delany said helped edit the memo, which Lee confirmed.

“HHS does not comment on future or potential policy decisions and task forces,” agency spokesperson Emily Hilliard said in an email.

The memo alleges that “aerosolized heavy metals such as Aluminum, Barium, and Strontium, as well as other materials such as sulfuric acid precursors, are sprayed into the atmosphere under the auspices of combatting global warming,” through a process of stratospheric aerosol injection, or SAI.

“There are serious concerns SAI spraying is leading to increased heavy metal content in the atmosphere,” the memo states.

The memo claims, without providing evidence, that the substances cause elevated heavy-metal content in the atmosphere, soil, and waterways, and that aluminum is a toxic product used in SAI linked to dementia, attention-deficit/hyperactivity disorder, asthma-like illnesses, and other chronic illnesses. The July 14 memo was addressed to White House health adviser Calley Means, who didn’t respond to a voicemail left by a reporter seeking comment.

High-level federal government officials are presenting false claims as facts without evidence and referring to events that not only haven’t occurred but, in many cases, are physically impossible, said Daniel Swain, a climate scientist at the University of California.

“That is a pretty shocking memo,” he said. “It doesn’t get more tinfoil hat. They really believe toxins are being sprayed.”

Kennedy has previously promoted debunked chemtrail theories. In May, he was asked on “Dr. Phil Primetime” about chemicals being sprayed into the stratosphere to change the Earth’s climate.

“It’s done, we think, by DARPA,” Kennedy said, referring to a Department of Defense agency that develops emerging technology for the military’s use. “And a lot of it now is coming out of the jet fuel. Those materials are put in jet fuel. I’m going to do everything in my power to stop it. We’re bringing on somebody who’s going to think only about that.”

DARPA officials didn’t return a message seeking comment.

‘This Really Matters to MAHA’

Deploying chemtrails to poison people is just one of many baseless conspiracy theories that have found traction among Trump administration health policy officials led by Kennedy, a longtime anti-vaccine activist before entering politics. He continues to promote a supposed link between vaccines and autism, as well as make statements connecting fluoride in drinking water to arthritis, bone fractures, thyroid disease, and cancer. The World Health Organization says fluoride is safe when used as recommended.

Delany, who was ousted in August from HHS, said Kennedy has expressed strong interest in chemtrails.

“This is an issue that really matters to MAHA,” said Delany, referring to the informal movement associated with Kennedy that is composed of people who are skeptical of evidence-based medicine.

The memo also alleges that “suspicious weather events have been occurring and have increased awareness of the issue to the public, some of which have been acknowledged to have been caused by geoengineering activities, such as the flooding in Dubai in 2024.” Geoengineering refers to intentional large-scale efforts to change the climate to counteract global warming.

“It is unconscionable that anyone should be allowed to spray known neurotoxins and environmental toxins over our nation’s citizens, their land, food and water supplies,” Delany’s memo states.

Scientists, meteorologists, and other branches of the federal government say these assertions are largely incorrect. Some points in the memo are accurate, including concerns that commercial aircraft contribute to acid rain.

“I expected there were documents like this, but seeing it in print is nevertheless shocking. Our government is being driven by nonsensical dreck from dark corners of social media.”

— David Keith, PhD, University of Chicago.

But critics say the memo builds on kernels of truth before veering into unscientific fringe theories. Efforts to control the weather are being made, largely by states and local governments seeking to combat droughts, but the results are modest and highly localized. It isn’t possible to manipulate large-scale weather events, scientists say.

Severe flooding in the United Arab Emirates in 2024 couldn’t have been caused by weather manipulation because no technology could create that kind of rainfall event, Maarten Ambaum, a meteorologist at the University of Reading who studies Gulf region rainfall patterns, said in a statement on the floods. Similar debunked claims emerged this year after central Texas experienced devastating floods.

The Government Accountability Office concluded in a 2024 report that questions remain as to the effectiveness of weather modification.

Research into changing the climate has been conducted, including work by one private company that engaged in field tests. Still, federal agencies say no ongoing or large-scale projects are underway. Study of the concept remains in the research phase. The Environmental Protection Agency says there are no large-scale or government efforts to affect the Earth’s climate.

“Solar geoengineering is not occurring via direct delivery by commercial aircraft and is not associated with aviation contrails,” the agency says on its website.

Widespread Misinformation

Misperceptions about weather, climate control, and airplane contrails extend beyond the Trump administration, scientists said.

In September, a congressional House committee hearing titled “Playing God With the Weather — A Disastrous Forecast” involved two hours of debate on the once-fringe idea. Rep. Marjorie Taylor Greene (R-Ga.), who chaired the hearing, has introduced legislation to ban weather and climate control, with a fine of up to $100,000 and up to five years in prison.

Some Democrats objected to the nature of the discussion. Rep. Melanie Stansbury (D-N.M.) accused Greene of using “the platform of Congress to proffer anti-science theories, to platform climate denialism.”

Frequently citing chemtrails, GOP lawmakers have introduced legislation in about two dozen states to ban weather modification or geoengineering. Florida passed a bill to establish an online portal so residents can report alleged violations.

“The Free State of Florida means freedom from governments or private actors unilaterally applying chemicals or geoengineering to people or public spaces,” GOP Florida Gov. Ron DeSantis said in a press statement this spring.

Meanwhile, the chemtrail conspiracy has permeated popular culture. The title track on singer Lana Del Ray’s seventh studio album is entitled “Chemtrails Over the Country Club.” Bill Maher dove into the chemtrail myth on his podcast “Club Random,” saying, “This is nuts. It’s just nuts.” And “Chemtrails,” a psychological thriller, wrapped filming in July.

Social media has given wing to the chemtrails concept and other fringe ideas involving public health. They include an outlandish belief that Anthony Fauci, who advised both Trump and President Joe Biden on the government response to the covid-19 pandemic, created the AIDS epidemic. There is no evidence of such a link, public health leaders say.

Researchers say another false belief by those on the far right holds that people who received covid vaccines could shed the virus, causing infertility in the unvaccinated. There is no evidence of such a connection, scientists and researchers say.

More severe weather events due to global warming may be driving some of the baseless theories, scientists say. And risks occur when such ideas take hold among the general population or policymakers, some public health leaders say. Climate researchers, including Swain, say they’ve received death threats.

Lee, the blogger, said he disagrees with some of the more far-fetched beliefs and is aware of the harm they can cause.

“There are people wanting to shoot down planes because they think they are chemtrails,” said Lee, adding that some believers are afraid to venture outside when plane vapor trails are visible overhead.

There is also no evidence that plane contrails cause health problems or are related to intentional efforts to control the climate, according to the EPA and other scientists.

The memo and focus at HHS on climate and weather control are alarming because they perpetuate conspiracies, said David Keith, a professor of geophysical sciences at the University of Chicago.

“It’s unmoored to reality,” he said. “I expected there were documents like this, but seeing it in print is nevertheless shocking. Our government is being driven by nonsensical dreck from dark corners of social media.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

3 Things You Need to Enjoy Life, Even With Chronic Pain

By Crystal Lindell

If you want to enjoy life again while also living with chronic pain, you need just three things.

1. An effective pain medication.
2. The ability to pace your activity level
3. Supportive loved ones

If you have all three of those things, it’s very possible to enjoy life while also enduring chronic pain. In fact, you could have a very happy life even with severe, debilitating pain every single day.

Unfortunately, of course, many chronic pain patients do not have all three of those things.

Even if they have access to opioids and other pain medications, they may not have the option to pace their activity levels due to things like work and parenting commitments. Or they may not have loved ones who show sympathy for what you’re going through and offer accommodations to make your life easier.

Sadly though, most doctors don’t recognize the importance of having all three things when they are treating chronic pain patients.

“Enjoying life” is usually not something doctors measure during treatments or appointments.  

Personally, I don’t think I have ever had a medical doctor ask me how much I’m enjoying life. Rather, they ask you to rate your pain level, and then either ignore you or send you off to another random specialist.

It’s why they don’t value the importance of prescribing pain medications that actually work, and why they rarely offer education for loved ones about how to better support the people in their life who have chronic pain.

It’s also why doctors rarely explain the importance of pacing your activity levels.

While I have had medical doctors tell me to quit working, I’ve had only one psychologist explain to me that instead of fully quitting, I could just cut back on some activities and plan more rest days.

In other words, stop pushing myself to the point of exhaustion before taking time to rest.

I assume that many doctors don’t grasp the concept of pacing, in large part because of their medical training. Residency scheduling makes it so that they are often working 24-hour shifts, with little time to recover before the next one.

In other words, the exact opposite of pacing.

When you have chronic pain, you can’t live that way though. Of course, technically, you can live that way, but you won’t enjoy life if you do.

If you accept the fact that you need to rest your body from time-to-time, you can actually do more activities in the long run.

However, under a capitalist system that prizes work, sometimes that is just not possible, no matter how much you want to pace yourself. In fact, the same applies to the other two things you need to enjoy life: Sometimes doctors just won’t give you pain medication and sometimes loved ones just will not support you.

There is good news though.

Even if you don’t have all three of those things, you can still find some joy in a life with chronic pain, as long as you are very stubborn and tenacious.

You just have to find alternative pain medications, like kratom or cannabis. And insist on creating a life that allows for pacing, whether that means changing jobs or moving in with family to help with daily life tasks. 

Then you have to educate your loved ones on how they can better accommodate you – and be prepared to pull back if they are mean or rude about it.

When I first developed chronic pain, I genuinely thought life was not worth living. That was more than a decade ago, and I’ve experienced countless joys since then: trips to Europe, meeting the love of my life, getting cats, and hugging my new niece.

Not to mention all the little joys, like fresh baked bread, cozy heated blankets on a cold winter night, and getting lost in a corn maze with my family.

I am very lucky to now have effective pain medication, a life that allows for pacing, and supportive loved ones. But I didn’t start that way. I rearranged my priorities to make it so. And it is possible that you can do the same.

You just have to stop trying to fight the pain, and instead learn to accept it. Then you can be free to live your life, while finding as many joys as you can along the way. 

No Healthcare for Lawmakers Until Every American Has Affordable Health Insurance

By Dr. Lynn Webster

Millions of Americans stand on the brink of losing the Affordable Care Act (ACA) subsidies that make their health insurance barely affordable. Without congressional action to extend those subsidies, families will face staggering premium hikes — forcing impossible choices between health coverage and rent, groceries or prescription drugs. Many will simply go without insurance.

Meanwhile, every member of Congress continues to enjoy taxpayer-funded health insurance, untouched by the very uncertainty they allow their constituents to endure. That disparity is indefensible.

A simple idea that would change the equation is that no elected representative in Congress should receive taxpayer-funded health care until every American has access to affordable health care.

If lawmakers had to share the same risks as their constituents, the urgency of reform would shift overnight. They would feel, in their own lives, the dread of losing coverage or facing premiums that devour a paycheck. They would no longer be insulated from the hardships they are sworn to alleviate.

This is not about punishment — it is about accountability and alignment. When lawmakers see their own well-being depends on fixing the system, solutions would rise above partisan theater.

Skeptics will point out that the Constitution protects congressional compensation, and they are right. Courts might interpret health benefits as part of that protection. That is why this should not be ordinary legislation. It should be a constitutional amendment — one that makes the principle unambiguous: members of Congress cannot enjoy taxpayer-funded health coverage until the people they serve have genuine access to affordable care.

Passing an amendment is never easy. But history shows it can be done when fairness demands it. Women’s suffrage, civil rights, and lowering the voting age all required constitutional change. Each once seemed out of reach — until public demand made it unstoppable.

This proposal does not dictate the specific policy mechanism — whether through extended subsidies, a public option, or another path. It sets only the principle that Congress must solve the problem before claiming benefits for itself. That principle is fairness.

And fairness should transcend party lines. At a time when the nation feels divided on nearly every issue, the idea that our leaders should not receive what they deny their constituents ought to unite, not separate us.

Making congressional health care contingent on achieving affordable care for all Americans could become a rare opportunity to bridge political divides and move the country toward greater unity.

Healthcare is not a privilege reserved for the political class. It is a necessity for every family. Across the nation, millions face losing coverage while their elected representatives remain fully protected. The injustice is clear.

Until every American has access to affordable healthcare, no member of Congress should accept it either. If they want the benefits, they must deliver them for the people they represent.

Anything less is a betrayal of public trust.

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.

Amazon Is Putting Pharmacy Kiosks in Its Own Medical Clinics

By Crystal Lindell

Have you ever dreamed of skipping the hassle of going to a pharmacy to pick up a prescription after you’ve seen your doctor?

Amazon wants to eliminate that extra trip by putting pharmacy kiosks — vending machines — in its One Medical clinics to dispense drugs on site. The move will increase Amazon’s growing share of U.S. pharmacy sales, at a time when many retail pharmacies are struggling. 

It also raises questions about a conflict of interest when doctors at One Medical – a wholly owned subsidiary of Amazon – steer their patients to Amazon Pharmacy kiosks to fill their prescriptions on the spot. 

In an Amazon promotional video, a One Medical doctor does just that:

Amazon is framing this as an issue of convenience that will improve the healthcare of One Medical patients, pointing out that nearly a third of all prescriptions are never filled.

"As clinicians, we see firsthand how delays in starting medication can impact treatment outcomes," Andrew Diamond, MD, Chief Medical Officer at One Medical, said in a press release. "The ability to know a patient is leaving our office with their medication in hand – especially for conditions requiring immediate treatment like infections – can make a meaningful difference in their care journey."

Starting in December, Amazon Pharmacy kiosks are being installed at One Medical clinics in the Los Angeles area, with expansion to additional clinics soon after.   

"By bringing the pharmacy directly to the point of care, we're removing a critical barrier and helping patients start their treatment when it matters most — right away," said Hannah McClellan, Vice President of Operations at Amazon Pharmacy.

To use the kiosks, patients must already have an account with Amazon Pharmacy, which requires them to provide their insurance information and other payment options. 

Once a prescription is scanned at a kiosk and the patient is verified, an Amazon pharmacist will begin to process the prescription remotely and be available to answer questions. If the prescription is approved, a robotic arm will pick out the medication from a vault inside the kiosk, label it, and drop it through a bay door for the patient to pick up.

The kiosks won’t carry controlled substances like opioids or drugs that need to be refrigerated, but that still leaves a lot of medication options for One Medical doctors to prescribe.

One Stop Shopping

Will Amazon’s doctors be incentivized to prescribe unnecessary or high-cost medications just to make extra money for their parent company?

Unfortunately, that’s not a far-fetched question to ask, given the well-known influence of pharmaceutical sales reps. The reps often give free meals, paid speaking engagements, and other financial incentives to doctors in hopes of getting them to prescribe their company’s medications. 

Amazon Pharmacy currently has a small market share compared to big chain pharmacies like CVS and Walgreens, but its home delivery system is rapidly growing and gaining in popularity. Amazon Pharmacy sales were projected to reach $1.8 billion in 2024 and some analysts say it could eventually be the leading drug store in the U.S.  

I fear that adding Amazon Pharmacy kiosks to One Medical clinics is just the first step. The company could place kiosks in other non-Amazon locations such as hospitals, medical offices, and urgent care clinics. Amazon admitted as much when it said its kiosk expansion plans include “additional One Medical offices and other locations.”

Amazon, which has a market cap of over $1 trillion, could wind up doing to pharmacies what it did to book stores 30 years ago: drive them out of business. Of course, chain pharmacies have already done a good job of doing that to themselves.

Millions of low-income and rural Americans already live in "pharmacy deserts" and have to drive long distances to fill a prescription. What will happen to them when additional pharmacies close? Or the patients who need controlled substances or refrigerated medications that the kiosks don’t dispense and Amazon won’t deliver? 

In the end, when it comes to healthcare, we should be extra cautious about the financial incentives at work and putting too much power in the hands of one company. 

Maybe the pharmacy kiosks will be convenient. Maybe Amazon’s doctors won’t prescribe unnecessary medications just to reach a kiosk sales goal. But I’m not willing to bet my health on that.

Placebos Don’t Work If You Know It’s a Placebo

By Crystal Lindell

Migraine patients who knew they were getting a placebo did not get any pain relief from it.

That’s a short summary of an actual study that was published in JAMA Network Open.

And to be honest, as a pain patient and a former migraine sufferer myself, I’m annoyed that they even wasted their time and resources on this research.

So how did they reach this very obvious conclusion? They recruited 120 chronic or episodic migraine patients for a three-month trial at two headache centers in Germany. About half the participants were given an “open-label placebo” twice a day — fake pills that the patients knew were fake — along with their usual treatments. The other patients just received treatment as usual and served as a control group..

Not surprisingly, they found that the open label placebos did not reduce monthly headache days, pain intensity, or days needing rescue medication compared to the control group.

In other words, the fake pills did not work. A conclusion I could have told them before a single participant was even registered for the study.

The frustration doesn’t stop there though. The researchers then tried to salvage these results by claiming that some of the patients did have slight improvements in what they call "secondary outcomes." That includes things like quality of life, pain-related disability, and “Global Impression of Change.” The latter is a fancy way of saying they felt better.

Even though they literally got no pain relief from the placebo pills and no reduction in migraine days, the authors insist that open-label placebos (OLPs) "might have a supportive role in migraine care.”

“Although more research is needed, OLPs… could potentially be a safe and suitable complementary option for patients with migraine, especially those who prefer nonpharmacologic approaches,” said lead author Julian Kleine-Borgmann, MD, a resident in the Department of Neurology at the University Medical Center Essen.

In other words, they want to explore this ineffective line of treatment even further!

This whole study was a waste of time, and the only saving grace would have been if they saw the results and concluded that further research into fake treatments should end – so that real treatment options can be further developed.

But no, the researchers looked at these very clear results and concluded that since some patients felt slightly better, further studies are needed. 

No. Stop it.

We get it, the medical community has had little success treating migraines or developing new pain treatments. But resorting to fake pills that patients know are fake won’t help anyone – except maybe the researchers who build their careers studying it. 

In fact, it only serves to reinforce the stigma that many pain patients are just looking for attention from doctors. 

It’s not difficult to imagine doctors thinking that if fake pills work on patients who know they are fake, then clearly their pain is probably fake too.

The results of this study should prove that is not the case, but I fear that the researchers don’t seem to have fully absorbed that lesson, given the fact that they want to explore placebo treatment further.

Migraines are a very real and debilitating medical condition that can greatly impact people’s lives. Patients who suffer from them deserve very real treatments in response.

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.  

Government Shutdown Halts Many Public Health Services

By KFF Health News

Threats of a federal government shutdown have gone from being an October surprise to a recurring theme. This time around, though, the stakes are higher.

Federal funding ran out at midnight on Oct. 1, after Congress failed to pass even a stopgap budget while negotiations continued.

Now the question is how long the deadlock will last, with Democrats pitted against Republicans and a presidential administration that has broken with constitutional norms and regularly used political intimidation and primary threats to achieve its ends. Because Republicans hold only a slim majority in the Senate, any deal will need to attract at least a few Democratic votes.

Ramifications from a shutdown on public health systems and health programs will be felt far beyond Washington, D.C., halting almost all of the federal government’s nonessential functions, including many operations related to public health.

Even on Sept. 30, as the clock ticked toward midnight, President Donald Trump renewed threats about mass firings of federal workers if Democrats didn’t acquiesce to GOP demands. Some people worry that such workforce reductions would further enable the administration to undermine federal government operations and reduce the budget impasse to what’s been described as three-dimensional chess or a game of chicken.

Such threats to fire, rather than temporarily suspend, federal workers are “unprecedented,” said G. William Hoagland of the Bipartisan Policy Center. The lack of negotiations between Capitol Hill Republicans and Democrats in advance of the shutdown is also unprecedented in his experience, said Hoagland, a longtime GOP Senate Budget Committee aide.

The stalemate centers largely on health coverage, with Democrats and Republicans clashing over the Affordable Care Act and Medicaid cuts. For Americans with ACA marketplace plans, government subsidies cap the percentage of household income they must pay toward premiums. Lawmakers expanded the subsidies in 2021 and extended that additional help through the end of 2025, and the looming expiration of those expanded subsidies would increase costs and reduce eligibility for assistance for millions of enrollees.

Democrats want a further extension of the subsidies, but many GOP lawmakers are resistant to extending them as is and say that debate must wait until after a budget deal to keep the federal government afloat. Antagonism has grown, with the parties in a pitched battle to convince voters the other party is to blame for the government’s closure.

Said Senate Minority Leader Chuck Schumer on the Senate floor Sept. 30: “Republicans have chosen the losing side of the health care debate, because they’re trying to take away people’s health care; they’re going to let people’s premiums rise.”

But Senate Majority Leader John Thune accused Democrats of attempting to “take government funding hostage.”

What the Shutdown Will Do

The longer a shutdown lasts, the more impacts could be felt. For example, some community health centers would be at risk of closure as their federal funding dries up.

Long-term projects by the Federal Emergency Management Agency to reduce damage from future natural disasters will stop, for example. Rescue services at national parks that stay open will be limited. And at the National Institutes of Health, many new patients awaiting access to experimental treatments may not be admitted to its clinical center.

Entitlement programs such as Medicaid and Medicare will continue, as will operations at the Indian Health Service. But disease surveillance, support from the Centers for Disease Control and Prevention to local and state health departments, and funding for health programs will all be hampered, based on federal health agencies’ contingency plans.

The Department of Health and Human Services is expected to furlough about 40% of its workforce, which has already been downsized by about 20,000 positions under the Trump administration. Across the federal government, roughly 750,000 employees will be furloughed, according to an estimate released Sept. 30 by the Congressional Budget Office, a nonpartisan agency that calculates the cost of legislation. While furloughed employees won’t be working, eventually they will get back pay, totaling about $400 million daily, the CBO estimated.

At HHS, research is expected to pause on the links between drug prices and the Inflation Reduction Act, the major law enacted under former President Joe Biden to boost the economy. Despite reports that Food and Drug Administration Commissioner Marty Makary said the FDA would basically be untouched, the agency won’t accept new drug applications and food safety efforts will be reduced. Federal oversight of a program that helps hospitals save lives and evacuate individuals in environmental crises is expected to stop.

Fewer federal staff will be available to provide help to Medicaid and Medicare enrollees. CDC responses to inquiries about public health matters will be suspended. And the work of a federal vaccine injury program is also anticipated to stop.

Democrats Want ACA Subsidies Renewed

Congressional Democrats insist the ACA subsidies must be renewed now because enrollment for the Obama-era health program opens on Nov. 1. Without the extended subsidies, health insurers are warning of double-digit premium hikes for millions of enrollees.

House Democratic Leader Hakeem Jeffries has argued that a “Republican-caused health care crisis” is hanging over Americans as a result of Trump’s new tax-and-spending bill, which adds restrictions to Medicaid that are expected to kick millions off the program. Republicans have also advanced mass layoffs and funding cuts at the nation’s health department and caused widespread confusion over access to some vaccines.

“We’re not going to simply go along to get along with a Republican bill that continues to gut the health care of everyday Americans,” Jeffries told reporters Sept. 29. “These people have been trying to repeal and displace people off the Affordable Care Act since 2010.”

Republicans, meanwhile, have blasted Democrats for holding up funding over the subsidies and say any deal will require concessions.

“If there were some extension of the existing policy, I think it would have to come with some reforms,” Thune, the Senate Republican leader, said Sept. 26.

Such a deal may involve changes to a policy that caps what consumers have to pay for ACA marketplace plans at 8.5% of their income, no matter how much they earn. It could also alter their ability to obtain plans with no premiums, an option that became more widely available because of the beefed-up subsidies.

Adding restrictions to the ACA subsidies is likely to decrease enrollment in the program, which saw declines during the first Trump administration and did not reach 20 million for the first time until last year, a milestone reached in large part due to the subsidies.

Several Republicans have expressed interest in extending the subsidies, including a group of GOP representatives who proposed legislation to do so last month.

Democrats may be betting that the timing of the shutdown will put pressure on their Republican colleagues to come to the negotiation table on the ACA subsidies.

Within days of the government’s closure, ACA enrollees are expected to get notices from their health insurers advising them of steeper premiums. Insurers have said the expiring subsidies have forced those large premium hikes because the healthiest and youngest people are more likely to opt out of coverage when prices go up.

The White House, meanwhile, ramped up its pressure campaign on Democrats. White House press secretary Karoline Leavitt insisted Sept. 29 that Trump wants to keep the government open.

“Our most vulnerable in our society and our country will be impacted by a government shutdown,” she said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

How Opiophobia Paved the Way for Tylenol Hysteria

By Crystal Lindell

The dirty little secret about alternatives to opioids is that they are all mostly bullshit.

They’re expensive, sometimes outright dangerous, and perhaps worst of all, ineffective.

So when doctors are telling you that you don’t need opioids to treat your pain, what they are really saying is that you don’t need pain treatment at all.

And that’s exactly the message that people are getting from the Trump administration’s recent guidance to avoid taking Tylenol while pregnant.

Specifically, the administration is now advising women not to use acetaminophen — which goes by the brand name Tylenol — for pain and fever during pregnancy due to claims that it raises the risk of their babies developing autism. 

Aside from the fact that science behind this claim is not definitive, the other major problem is that there is no safe alternative to acetaminophen that a woman can take for pain and fever while pregnant. Over-the-counter pain relievers like aspirin and ibuprofen can damage the kidneys of unborn babies.

President Trump admitted as much during the press conference about the new guidance, putting the onus on pregnant women to “tough it out” by not taking Tylenol

“Sadly, first question, what can you take instead? It's actually, there's not an alternative to that,” Trump said. “And as you know, other medicines are absolutely proven bad. I mean, they've been proven bad, the aspirins and the Advils and others, right?

“But if you can't tough it out, if you can't do it, that's what you're going to have to do. You'll take a Tylenol, but it'll be very sparingly.”

That’s a genuinely inhumane response to the pain pregnant women often endure, because what he’s really saying is that you just should not treat pain while pregnant. It’s also on-brand messaging for an opiophobic country that’s been dismissing everyone’s pain for almost a decade now.

As it turns out, when you tell people that their pain doesn’t deserve to be treated by opioids, then it’s a quick path to the idea that pain shouldn’t be treated by other substances, be they cannabis or kratom or Tylenol. 

In the end, it all really comes down to a fundamental question of whether or not pain is worthy of treatment.

And unfortunately, for many healthcare professionals and government officials, the answer is a resounding “no.” They do not believe that pain is worthy of treatment – as long as it’s not their pain. Because, make no mistake, when these types of policies come out, that’s exactly who they apply to: other people.

They know that they themselves will get to use opioids if and when the time comes that they need them for their own pain. And they don’t expect to have a pregnancy themselves, so of course they don’t care if pregnant women can’t have their pain treated.

It's why Trump can so dismissively say "there's no downside in not taking it." He means there is no downside to him if you don’t take Tylenol.

But for pregnant women, there most certainly is a downside. Failing to treat fever and significant pain can pose serious risks to both the mother and baby, resulting in miscarriages, birth defects, depression, infections and high blood pressure.

Enduring untreated pain can wear you down in ways you can’t even predict. It will destroy your sleep, steal your hope, and even make you mean. When it’s your pain, you’ll do anything to make it stop.

Pain is a medical condition on its own, and “toughing it out” is not an effective treatment. Until we as patients and voters demand better, I fear both the government and our healthcare system will continue chipping away at the pain treatments we still have — until there is literally nothing left but silent prayers and fleeting wishes.