Louisiana’s New Law Shows How Opioid Phobia Ushered in Abortion Restrictions

By Crystal Lindell

I’ve long said that pain medication is a “my body, my choice” issue – and a new Louisiana law really drives home the connection between opioids and abortion regulations. 

The state passed a law back in May that re-classifies mifepristone and misoprostol – two medications taken in tandem to induce abortion – as Schedule IV controlled substances, the same category as Xanax and Valium. 

Misoprostol is prescribed for a variety of situations, including reproductive health emergencies, as well as miscarriage treatment, labor induction, or intrauterine device (IUD) insertion. Because it is also used for chemically-induced abortions, the drug has long been a target of pro-life advocates in Louisiana, where abortion was criminalized in 2022.  

Under the new law, possession of either mifepristone or misoprostol without a prescription from a specially licensed doctor is a felony punishable by up to 5 years in prison.

It’s the biggest sign yet that the War on Drugs has officially collided with abortion rights in our post-Roe V. Wade world. Indeed, as states continue to restrict access to opioids and other medications, it becomes more and more obvious that pain patients and abortion rights advocates share a common fight. 

The state law goes into effect Oct. 1, but a report in the Louisiana Illuminator highlights how it’s already causing "confusion and angst" amongst healthcare professionals. 

In anticipation of the new law, some Louisiana hospitals are already removing mifepristone from their obstetric emergency care carts, where it would be used in the case of hemorrhage after delivery to stop bleeding and save a mother’s life. Removing it from the cart and locking it up is a standard practice at hospitals for controlled substances, but it means that mifepristone can’t be accessed immediately during emergencies. 

“Doctors and pharmacists are scrambling to come up with postpartum hemorrhage policies that will comply with the law while still providing proper medical care for women,” the Illuminator reports. 

Note how the idea of not complying with the law – which many doctors have personally disagreed with – doesn’t even seem to enter the realm of possibility. It’s the full manifestation of “just following orders” justification. 

One doctor theorized that the pending law also likely explains why pharmacists had been “pushing back” when she prescribed misoprostol for outpatient miscarriage management.

“They’ve been calling her to request clarification on why she prescribed the medication, and one pharmacy refused to fill the prescription,”  the Illuminator reported. “She had to send that patient to a different pharmacy. Her patients often travel hours to see her, and she regularly has to call in misoprostol to help them manage care at home.”

Pharmacies pushing back on doctor's prescriptions? That sounds familiar. In fact, many patients who take necessary medications like hydrocodone for pain or Adderall for ADHD have numerous stories to share about pharmacists trying to block their prescription from being filled.

And while it may not seem like it at first, all those points of friction in the process do lead to doctors refusing to prescribe controlled medications because they don’t want to deal with the hassle and risk of going to prison. It’s an outcome that I’m sure the Louisiana lawmakers who pushed the legislation through are hoping for with abortion-related medications. 

Making a Choice

It’s a grave mistake to think we can isolate things like pain medication restrictions from the rest of healthcare. Every new restriction that takes options away from doctors and patients paves the way for the next one that comes down the pike. 

Pro-choice advocates sometimes try to claim abortion medications shouldn’t be restricted because they are “life-saving.” However, many other controlled substances are also life-saving and we don’t see the pro-choice movement standing up for patients who need them. Those patients are also making a “choice” about their own bodies.

Untreated ADHD is proven to lower your life expectancy. Untreated and under-treated pain can cause a number of complications, from needless suffering and withdrawal to longer recovery times and even death when patients are forced to find pain relief on the unsafe black market.

Controlled substance laws make it much more difficult for patients who need medications labeled with that classification to get them – and people do die as a result. Just as people will likely die as a result of the new law in Louisiana. 

My concern is that the general public has been too quick to accept medication restrictions as necessary when they are promoted as solutions to things like the “opioid crisis.” I fear that people will start to believe that mifepristone and misoprostol are actually worthy of the classification of “dangerous controlled substance,” just as they believe medications like hydrocodone and Adderall are.

Unfortunately, if pain treatment is any indication, I don’t expect many doctors or hospital administrators to be willing to risk personal punishment for the health of their patients. I have personally seen doctors refuse opioids to dying patients because they “might get in trouble.”

I expect most medical professionals and hospitals will comply with the new Louisiana regulations without much tangible push back.

On the other hand, maybe there is a small place for hope here. Imagine a world where classifying more drugs as controlled substances helps medical professionals and the public understand why these classifications are problematic – legal frameworks that lack sound medical reasoning. Unfortunately, I don’t see that happening any time soon. 

In the meantime, pro-choice advocates could learn a lot from those of us who have been on the front lines of the drug war for decades. If we want to have any hope of victory, we all need to join together to fight all restrictions on bodily autonomy – whether it’s related to reproductive health, pain management, or any other health condition. 

We must join forces now. The longer we wait, the more emboldened governments will become in making choices for us.

Got a Surprise Medical Bill? Complaining About It Usually Pays Off

By Erin Duffy

What do you do when you disagree with or can’t afford a medical bill?

Many Americans struggle to pay medical bills, avoid care because of cost worries or forgo other needs due to health care cost burdens.

It can be hard to understand what you’re being charged for on a medical bill. I’m a health policy and economics researcher who studies insurance and out-of-pocket health care expenses, and even I sit at my kitchen table trying to wrap my head around bills and explanations of benefits.

In my newly published research, I surveyed a nationally representative sample of 1,135 American adults – a subset of participants from the University of Southern California’s Understanding America Study – to find out how they handle troubling medical bills. I learned that advocating for yourself can pay off when it comes to medical bills, and you may be missing out on financial relief when you don’t pick up the phone.

Squeaky Wheel Gets the Grease

My team and I found that 1 in 5 patients had received a health care bill in the prior year that they disagreed with or couldn’t afford. Nearly 35% of the bills came from doctor’s offices, nearly 20% from emergency rooms or urgent care and over 15% from hospitals. Other sources of bills included labs, imaging centers and dental offices.

A little over 61% of respondents contacted the billing office about a troubling bill, but 2 in 5 did not. Why not? About 86% of patients said they did not think it would make a difference.

But reaching out got results. Nearly 76% of patients who reached out got financial relief for an unaffordable bill. Nearly 74% who spoke up about a potential billing mistake received bill corrections. For those who negotiated their bills, nearly 62% saw a price drop.

Additionally, 18% of patients who reached out got a better understanding of their bill, 16% set up payment plans and a little over 7% got the bill canceled altogether. Nearly 22% said their issue was unresolved, and 24% reported no change.

The majority of people who reached out about their medical bills reported that it took less than one hour to handle their issue.

Grumpy Extroverts Get Results

We found that people with a more extroverted and less agreeable personality – based on the Big Five Personality Test – were more likely to reach out about a medical bill. People without a college degree, with lower financial literacy or with no health insurance were less likely to reach out to a billing office.

Differences in who does and doesn’t call about a medical bill may be exacerbating inequalities in how much people end up paying for health care and who has medical debt.

Many Americans are in health plans with high out-of-pocket cost sharing, including high-deductible plans. This so-called consumer-directed health care paradigm is intended to motivate consumers to be more cost-conscious when seeking care and navigating their bills. But by design, it puts the burden on patients to deal with billing issues.

Another recent study my team and I conducted found that 87% of U.S. hospitals offer their own payment plans, but only 22% of these put plan details on their websites. You have to call for more information.

In another recent study, my team called hospitals as “secret shoppers” planning an elective knee surgery. We sought information critical to assessing affordability: financial assistance, payment plans and payment timing options. While the information was often available, it was hard to access. We couldn’t reach a representative with information at about 18% of hospitals, even after calling on three different days. We were typically directed to three different offices to get all the information we wanted.

Policymakers have made strides in price transparency in recent years. For example, hospitals are required to post prices for their products and services. Practices and policies that further reduce the administrative burden of accessing aid and navigating troubling bills.

Pick Up the Phone

Patients who make the call are benefiting when it comes to medical bills.

A colleague who knew I was working on this study asked me for advice about a $425 bill her household had received for a lab test at an urgent care center. The bill seemed inflated and unfair, forcing an unexpected stretch to her budget.

I told her it was worth a call to the billing office to express her feelings about the bill and see whether any adjustments could be made to the amount owed or the timing of payment.

It was worth the call. The billing office representative offered three options on the spot:

a.) a payment plan, b.) a prompt payment of $126 paid immediately over the phone to settle the account, or c.) financial assistance if eligible based on income.

My colleague chose option b and paid less than one-third of the original bill amount.

The next time you get a medical bill that troubles you, pick up the phone or ask a disagreeable extrovert to make the call for you.

Erin L. Duffy, PhD, is a research scientist and the Director of Research Training at the USC Schaeffer Center for Health Policy and Economics. Her research explores cost-drivers, market failures, and patients’ financial liability in the U.S. healthcare system.

This article originally appeared in The Conversation and is republished with permission.

Can Psychedelics Be a New Option for Pain Management?

By Kevin Lenaburg

Science, healthcare providers and patients are increasingly finding that psychedelics can be uniquely effective treatments for a wide range of mental health conditions. What is less well-known, but also well-established, is that psychedelics can also be powerful treatments for chronic pain.

Classic psychedelics include psilocybin/psilocin (magic mushrooms), LSD, mescaline and dimethyltryptamine (DMT), a compound found in plants and animals that can be used as a mind-altering drug. Atypical psychedelics include MDMA (molly or ecstasy) and the anesthetic ketamine.

More than 60 scientific studies have shown the ability of psychedelics to reduce the sensation of acute pain and to lower or resolve chronic pain conditions such as fibromyalgia, cluster headache and complex regional pain syndrome (CRPS).

The complexity of pain is well matched by the multiple ways that psychedelic substances impact human physiology and perception. Psychedelics have a number of biological effects that can reduce or prevent pain through anti-nociceptive and anti-inflammatory effects. Psychedelics can also create neuroplasticity that alters and improves reflexive responses and perceptions of pain, and helps make pain seem less important. 

New mechanisms of action for how psychedelics improve pain are continually being discovered and proposed. Mounting evidence seems to show that a confluence of biological, psychological and social factors contribute to the potential of psychedelics to treat complex chronic pain. 

It is premature to state that there is one key or overarching mechanism at work. Research continues to explore different ways that psychedelics, combined with or without adjunctive therapies, can impact a wide range of pain conditions.

The National Institutes of Health recently posted a major funding opportunity to study psychedelics for chronic pain in older adults. And for the first time, PAINWeek, one of the largest conferences focused on pain management, has an entire track dedicated to Psychedelics for Pain at its annual meeting next month in Las Vegas. 

Clearly, pain management leaders are welcoming psychedelics as a vitally needed, novel treatment modality, and it is time for healthcare providers and patients to begin learning about this burgeoning field.

It is important to note that all classic psychedelics are currently illegal Schedule I controlled substances in the US. The FDA has granted Breakthrough Therapy Designation to multiple psychedelics, potentially accelerating access, but the road to approval at the federal level is long. 

However, at the state level, the landscape is changing rapidly. Similar to how states led the way in expanding legal access to cannabis, we are now seeing the same pattern with psychedelics. 

In 2020, Oregon voters approved an initiative that makes facilitated psilocybin sessions available to adults who can afford the treatment. 

Voters in Colorado approved a similar measure in 2022, with services becoming available in 2025. To become a certified facilitator in Colorado, individuals must pass a rigorous training program that includes required instruction on the use of natural psychedelics to treat chronic pain. 

This coming November, voters in Massachusetts will also decide on creating legal access to psychedelics. 

Over the next decade, we will likely see multiple pathways to access, such as continued expansion of state-licensed psychedelic therapies; FDA-approved psychedelic medicines; and the latest proposed model of responsible access, Personal Psychedelic Permits. The last option would allow for the independent use of select psychedelics after completing a medical screening and education course focused on benefits and harm reduction. Overall, we need policies that lead to safe supply, safe use and safe support.

As psychedelics have become more socially accepted and available, rates of use are increasing. This includes everything from large “heroic” doses, where people experience major shifts in perception and profound insights, to “microdoses” that are sub-perceptual and easily integrated into everyday life. 

In the area of chronic pain, a lot of the focus is on finding low-doses that are strong enough to reduce pain, but have no or minor visual effects. This amount seems sufficient for many people to activate the necessary receptors to reduce chronic pain.

While doctors are years away from being able to prescribe psychedelics, increasing public usage indicates that now is the time for the medical community to become more knowledgeable about psychedelic-pharmaceutical interactions and psychedelic best practices to serve the safety and healing of their patients.

We also need healthcare providers and pain patients to join the advocacy fight for increased research and expanded access to psychedelics. Providers have the medical training and knowledge to treat pain, while patients often have compelling personal stories of suffering and their own form of expertise based on lived experience. 

One of the most effective lobbying tandems is a patient who can share a powerful personal story of healing, hope and medical need, combined with the expertise and authority of a doctor. Together, we can create a world with responsible, legal access to psychedelic substances that lead to significant reductions in pain and suffering.

Kevin Lenaburg is the Executive Director of the Psychedelics & Pain Association (PPA) and the Policy Director for Clusterbusters, a nonprofit organization that serves people with cluster headache, one of the most painful conditions known to medicine. 

On September 28th and 29th, PPA is hosting its annual online Psychedelics & Pain Symposium, which features presentations from experts and patients in the field of psychedelics for chronic pain and other medical conditions. The first day is free and the second day is offered on a sliding scale, starting at $25.

Why a Diagnosis Really Matters When You Have a Chronic Illness

By Crystal Lindell

Trying to get a diagnosis for chronic health problems is like being born with brown hair and dying it blonde your whole life because it feels mandatory. 

Then, after one dye job too many, you start to lose your hair in chunks, so you decide it’s time to get some help. But by then, everyone is invested in you being a blonde. 

You go to the doctor and they look at your dyed blonde hair, which you’ve been maintaining because of societal expectations. And they say, “Umm, you don’t look brunette?” 

Then, despite your very visible brown roots, the doctor accuses you of just wanting the label of “brunette” as a fad. You wonder if he’s right, while your hair falls out from bleach damage.

It took 5 years for me to get an official diagnosis of Ehlers-Danlos syndrome (EDS) after I started having serious health problems. The kind of health problems that cause you to go from an independent overachiever with 2 jobs and an active social life down to one job, moving in with your mom and spending so much time in her basement that your vitamin D drops to dangerously low levels.

It took me 5 years even though a couple years before I was diagnosed with EDS a doctor added  “benign hypermobility” to my chart. A notation that should have almost immediately led to the Ehlers-Danlos syndrome diagnosis, seeing as how I was clearly having issues that were not benign! 

It honestly makes me want to scream obscenities just remembering it. How casual they were about my life. How dismissive it all feels in retrospect. 

Lurk around any chronic illness patient group online, and you’ll see a similar refrain: Doctors don’t like to diagnose complex chronic health conditions. In fact, patients often have to figure out what they have themselves, and then find a way to present it to the doctor without offending them. I suspect this is why it takes an average of six years to get a diagnosis for a rare disorder. 

Or, if you want to torture yourself, spend time on the Reddit boards for verified medical professionals. There you’ll see the doctors confirming your worst fears: They do think you’re hysterical. They do think you just want attention. They do think the diagnosis that fits your condition is just a fad.

I want to make those doctors understand why none of that is true. I desperately search for the words to make them understand why a diagnosis matters so much when you’re suffering. Even if there’s no cure. Even if it doesn’t change the course of treatment. Even if you’ve already diagnosed yourself.

I grasp at metaphors that fall through the overextended joints in my fingers, desperately trying to make them understand the importance of a diagnosis.

I want to make my case so bad. To use logic and poetry to explain why naming things does actually matter. More than that, I want to make the case for the other patients who are suffering without even being granted the words to explain why.

My pleas fall to the ground though, because doctors don’t listen. Their minds are already made up. It’s all in our heads. And even if it’s not, they say, there’s no point in labeling it. 

They accuse you of just wanting a label to feel special, as though they — as doctors and nurses with their very own set of special letters after their names — aren’t obsessed with labels that make them feel special. 

Worse though, I suspect that somewhere deep down, the doctors know what I know: If a diagnosis did not matter, they wouldn’t be so stressed about not handing them out.

Naming things empower you. It gives you a sense of control over something that’s usually very uncontrollable. But more than that, it gives you the ability to explain it to others. To connect to another human being about your experience.

So yes, a diagnosis does matter. It matters immensely. I just wish I had a single word to explain exactly why. 

The Pride and Prejudice of Living with Disability

By Mia Maysack

July was Disability Pride Month, and as much as people with disabilities deserve recognition, I could not help but have mixed feelings about it.

Disability awareness should not be a one-time event, something that is condensed to a single month, week or day on a calendar. I find that borderline hypocritical. We don't need support when it's convenient, fits neatly into a schedule, checks off some sort of box, or simply looks good.

What we're truly in need of is life-giving care, resources, accessibility and validation --- every single day. I believe the difficulty in achieving those goals comes down to adequate funding and the attitude of the general public, who more often than not separate themselves from the most vulnerable among us.

The overall health and well-being of a society is a collective responsibility that we all have a role to play in. Until we actively participate, we'll remain dependent on systems that are rigged against us, often due to distractive barriers such as class, sex, race and ableism.

Many of us who live with a disability understand that all it takes is a slight shift in circumstance to completely alter or change your life. Each of us are only an accident or diagnosis away from a completely different and more challenging existence.

Why is it we must wait for those challenges to happen to us personally, or to someone we know and care about, before we genuinely begin to give a damn? 

On the one hand, I am proud as hell to be a part of this disabled demographic. We not only continue to choose life, but we do so under scrutiny and circumstances that countless others don't have to worry about or take into consideration.

We not only cope, but face obstacles that more able-bodied individuals don’t even think of, such as the lack of wheelchair ramps, mobility obstacles, lack of transportation, or even the successful completion of the most mundane and basic chores of living.

On the other hand, what is it that I am supposed to be “proud” of exactly?  That it took me three attempts to complete one bathing session? That I was exhausted afterwards to the point of needing to spend the rest of the day recuperating?  Am I to be prideful that I exist in a country that persistently claims not to discriminate, but blatantly does so? 

Is it pride-worthy that I’m essentially punished for being unwell, while also being expected to someday improve -- without being granted adequate or proper accommodations to do so?  

Are we to figuratively jump-for-joy over the fact that we have to beg, plead and consistently “prove” the legitimacy of our disability, while simultaneously being condemned, doubted, judged and looked down on as burdens on society? 

Should I celebrate the fact that if I find work, fall in love or get married -- or God forbid make a dollar over my government allowance -- that I run the risk of my disability benefits being terminated?

If we don’t work at all, we are lazy bums. And if we get a job, then we were faking it! 

These are egregious injustices that keep us dependent. We’re treated as if we should be thanking our lucky stars for the ability to merely exist, with little awareness of the demands that it requires or the extensive toll that it takes.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.

The Best Advice for Someone New To Chronic Pain: Sleep

By Crystal Lindell

If you’re new to chronic pain, try your best to get some sleep. 

Whether you use a pill, a sick day, a babysitter, or some combination of all three — your first priority is to get a really good, restful night of sleep. 

Nothing can be dealt with before that happens, but everything will feel more manageable when you wake up. 

As someone who writes about chronic illness, people often reach out to me when they or someone they love suddenly finds themselves dealing with a new health issue. And my first piece of advice is always the same: YOU NEED TO SLEEP. 

Chronic illness – especially chronic pain – has a way of eating away at your sleep like a party full of toddlers grabbing chunks of birthday cake. Even if you lay in bed all night long, true sleep can easily evade you. 

Lack of sleep will make you crazy so much faster than you think it will. It will make every problem you face impossible. And it will make every interaction you have with humans or pets infuriating. 

When I first started having chronic pain at age 29, I did not understand any of this. At the time, I was working two jobs, with one requiring a daily hour-long commute each way. I was secretly proud to be living on as little sleep as possible, long before I started having serious health issues.

I thought I was the type of person who could easily live on little-to-no sleep. But there’s a big difference between getting five hours of sleep, going to work, then coming home to crash for 10 hours versus getting less than two hours of sleep a night for multiple nights in a row.

I didn’t realize how much sleep my new pain was stealing from me. And I didn’t realize just how quickly it would start destroying my will to live.

During one early pain flare, before I had any of the tools I have now to manage such things, I was awake for like five days straight. I say “like” because that week is kind of a traumatic blur. It was only a few days, but it felt like a month. 

After one of the first rough nights, I showed up at my primary care doctor’s office before it even opened, begging for help. Another day, I went to an urgent care clinic. By the end of the week, I was laying on my living room floor planning ways to kill myself. 

It doesn’t take long to reach really dark places when you aren’t getting enough sleep. And lack of sleep will make almost any physical pain worse too. Combine those two things, and it’s easy to mistakenly start convincing yourself that being alive is the wrong choice. 

Eventually, a pain doctor gave me a strong antidepressant and sleeping aid called amitriptyline, and I finally got some real rest. Of course, like any strong sleep aid, it came with a lot of side effects. It made me very tired in the morning, sometimes making it impossible to get up for work. It made me gain unwanted weight. And it left me groggy throughout the day. 

But after going days without sleep, those were all side effects I was happy to accept. 

Bodies need the power reset that sleep is supposed to provide, both mentally and physically. When you don’t get that, things get scary glitchy fast.

So if you’re new to chronic pain, do whatever you need to do to get some sleep. And if you aren’t able to get the sleep you need with the tools you have at home, do not hesitate to go to the doctor or even the emergency room. Sleep is that important. 

After a few nights of real rest, then you can start to tackle the rest of the ways your newfound health issues are affecting you. Because trust me, there'll be plenty of time for all that in the morning. 

Patients and Providers Say Cannabis Helps Reduce Opioid Use

By Crystal Lindell

More than half the pain patients certified in New York state’s medical cannabis program say they’re using cannabis as an alternative to opioid medication. 

That’s great news for patients who see real benefits from cannabis, but we have to be careful to avoid further demonizing opioids when data like this is released. Using something as an alternative doesn’t show that it’s necessarily more effective or more helpful. Often, it just means that something is more accessible. 

The data comes from the New York State Office of Cannabis Management’s 2023 Patient and Provider Survey Report, which was recently released. This was a large survey that collected responses from 10,781 patients and 265 providers enrolled in the state’s medical cannabis program. 

“Findings from both the patient and provider surveys demonstrate that medical cannabis is effective for pain management and has the potential to reduce the use of opioids,” the report found.

About 57% of the patients were pain sufferers, making pain the top condition for using cannabis, followed by post-traumatic stress disorder (24%), neuropathy (19%), spasticity (11%), rheumatoid arthritis (11%), inflammatory bowel disease (10%) and cancer (8%).

The survey found that 66% of patients think medical cannabis helped reduce their use of opioids for pain management.

The providers were largely in agreement, with 83% saying “medical cannabis should be used to reduce the use of opioids for pain management” and 75% saying cannabis poses less risk than opioids. 

However, this is where I start to raise my eyebrow a bit. 

It makes me nervous that so many providers see cannabis as being safer than opioids. The fact that 25% of them don’t is also a telling statistic. It means the data on this is unclear.

All substances have side effects. Both patients and providers understand this. In a just world, patients should be able to make the choice about which substances or medications they use, after factoring in their own preferences for what side effects are acceptable as a tradeoff for pain relief. 

Even if it was proven that cannabis is significantly safer than opioids for managing pain, that doesn’t mean it’s just as effective as opioids. Personally, I don’t find cannabis to be very effective at all for treating my pain. I also really dislike how sleepy it makes me. For my life and my needs, opioids remain a much better option. 

I’m lucky enough to have a recurring prescription for opioid medication. But for patients who can’t get an opioid prescription, they don’t truly get a choice or “alternative.” Cannabis may be their only legal option. 

The New York State report also shows me that it’s long past time to make cannabis legal at the federal level. It’s clear now that classifying cannabis as an illegal controlled substance never had any foundation in health concerns. Clearly, cannabis can help treat a large number of medical conditions. And many people get health benefits from using it. 

A lot of drugs that are classified as harmful controlled substances can still be obtained by prescription. And some that are not “controlled” are potentially more dangerous than cannabis. That doesn’t make any sense, but that’s how the system is set up under the Controlled Substance Act. 

The way that cannabis has been slowly legalized across the country should make us take a long look at all of our drug laws. There are many illegal substances, such as psychedelics, that could potentially help people manage health conditions – but only if they had access to them in the same way most Americans can now access medical or recreational cannabis. 

If nothing else though, cannabis’ slow legalization has given me some hope. I can remember even 25 years ago, being in college, listening to guys in dorm rooms ramble on about how cannabis would be legalized someday. I confess I didn’t believe them. At the time, it felt impossible. 

Turns out, I was wrong. Now I just hope we don’t stop at cannabis. 

Research Confirms What Women Already Know About Sex Bias in Pain Care

By Crystal Lindell

There’s a new study showing that doctors take pain reported by male patients more seriously than female patients. And I have to say – why are we still doing studies on this? 

Anybody who’s been paying attention already knows this is the case. We have known it’s been true for decades. What we actually need are studies on what can be done to effectively fix this sex bias. 

For the sake of relaying this important information one more time though, let’s look at the study, which was published in the journal PNAS. The researchers did an analysis of emergency room patient data in the U.S. and Israel, which showed that there is medical bias against female patients in pain management decisions.

They analyzed more than 21,000 patient records and found that female ER patients across every age group were consistently less likely to receive pain medication compared to male patients with similar complaints. 

Depressingly, this bias persists across different ages, pain levels, and even physician gender. Which means female doctors are just as guilty as male doctors.

"This under-treatment of female patients' pain could have serious implications for women's health outcomes, potentially leading to longer recovery times, complications, or chronic pain conditions,” says Shoham Choshen-Hillel, PhD, Associate Professor at The Hebrew University of Jerusalem.

Yeah – and pardon my French here, but – no shit. Like I said, anyone who’s been paying attention has known this for a long time. Many of us have already been living with the so-called “serious implications.” 

Way back in 2014 – a full decade ago – I wrote about my experiences as a woman in pain. At the time, I wrote: 

“Being in pain every day, all day, is hard. But when you’re a woman, there’s a whole extra layer to the situation that makes everything that much harder… 

Like did that male doctor just give me Aleve for my level-10 pain because he really thinks that’s going to help? Or did he just think that, as a woman, I was probably exaggerating?”

Now that I’m 10 years older, and 10 years more experienced as a patient with chronic illness, I can answer my own question: Yes. He definitely thought I was exaggerating. 

But I’m not the only one who’s been talking about sex bias in pain care for a long time. 

The advocacy organization for women in pain, “For Grace” was founded in 2002 – more than 2 decades ago! Their mission is “to increase awareness and promote education of the gender disparity women experience in the assessment and treatment of their pain.” 

A 2001 study of gender bias in the Journal of Law, Medicine & Ethics was given the headline "The Girl Who Cried Pain: A Bias against Women in the Treatment of Pain." 

And here's another one from the last century (1996) in The Journal of the International Association for the Study of Pain titled, "Gender variations in clinical pain experience"

The fact that female pain isn’t taken as seriously as male pain is not new! 

Solutions Needed

Researchers behind the latest study do call for solutions, asking for “urgent policy interventions to address this bias and ensure equal pain treatment regardless of sex.” 

Specifically, they recommend training programs for healthcare professionals to recognize and counteract sex bias, and say pain management protocols should be revisited to ensure fair and adequate treatment for all patients.

All great ideas. But not really new ones. 

Now we need new training programs to undo the ingrained patriarchal bias among doctors. Because whatever they’ve been trying clearly isn’t working. 

Continuing to do more and more research showing that what women have been complaining about for decades is true doesn’t help anyone. We need solutions. 

This is where I’m going to get a little bit radical. Because personally, when it comes to pain treatment, I already have a very good solution: A lot more pain medication needs to be sold the same way alcohol is – over the counter. We cannot trust doctors – even female doctors – to give it to women when we need it.

This would not solve the problem of female pain being ignored, but it would at least provide some immediate relief for women, as well as others, who often have their pain ignored because of sexism, cultural bias, racism and classism. 

This is also a large part of why I believe pain control and access to pain medication is a “my body, my choice” issue. Until we have medical training that can actually undo thousands of years of sexism, we should all have the legal right to treat our own pain when doctors refuse to take it seriously.  

In the meantime, we don’t really need more studies showing that there’s a sex bias in pain treatment. They’re essentially a waste of time at this point. What we need are solutions to a problem that millions of people have been aware of for a very long time.

Telehealth Offers More Convenience and Options to Rural Patients

By Crystal Lindell

I live in rural northern Illinois, near the Wisconsin border, which means like a lot of people in my area, I cross the state line to get most of my medical care. 

My location also meant that when telehealth appointments became more common post-2020, I wasn’t allowed to do the call from my house. Hospital administrators told me that I had to be within the state of Wisconsin to see my doctor. 

Thus, anytime I had a telehealth video call, I got in my car and drove about 45 minutes north across the Wisconsin border – all so I could park my car at a truck stop and call the doctor. 

My doctor’s actual office is another 45 minutes away, so this method was still preferable to driving 90 minutes each way to see him in person. But it wasn’t ideal, especially in the winter. I remember being completely bundled up with a hat and a hood covering my head, trying to tell my doctor about my current health status as horns from semi trucks blared in the background. 

Yes, I probably could have just lied and taken the telehealth call closer to my house, but aside from the fact that I don’t like lying, I also didn’t know if the hospital’s telehealth software had GPS that could locate where I was. I didn’t want to risk it. As a patient who takes a controlled substance medication, I don’t have the luxury of bending rules, lest I get in trouble and potentially even risk my prescription.  

Thankfully, after doing this driving slog for a few telehealth appointments, something was worked out between Wisconsin and Illinois to where I am now able to do telehealth appointments from my home. And because a lot of doctor appointments for my chronic health condition are just check-ins, I have to tell you – telehealth is amazing. 

I truly love that it not only saves me from a long drive for appointments, it also means I don’t have to be exposed to whatever germs may be circulating at my doctor’s office. If there was any good to come from COVID, it’s that it finally pushed telehealth into the mainstream. 

Of course, with each advancement comes consequences. A recently updated study published in the Review of Financial Studies found some potentially bad news about telehealth: It hurts rural hospitals and medical providers, many of whom are already struggling.  

The researchers found that as rural patients opt for telehealth appointments with urban healthcare providers, rural healthcare systems lose patients. Then things start to spiral downward, as the loss of patients means they have less money to invest in both capital and staffing, which means they offer even fewer services. Then they lose even more patients to urban telehealth providers. 

“Rural hospitals are losing, on average, a lot of money,” says co-author Zihan Ye, assistant professor of finance at the University of Tennessee at Knoxville.

Ye says patients who choose remote healthcare primarily because of convenience should consider the long-term financial ramifications, as should policymakers who have the power to influence which providers can afford to offer telemedicine at all.

However, I have to point out, that’s a big ask for sick people. It should not be the job of patients to consider the “long-term financial ramifications” of providers. 

I would love to have a healthy, functional rural healthcare provider closer to me, but I also would counter that rural healthcare abandoned us long before we resorted to telehealth. 

I don’t drive 90 minutes each way to see my doctors because I enjoy road trips. I have been doing it since 2013 – long before telehealth appointments were a feasible option. 

And I do it because I tried and failed to find a doctor closer to me, who could handle the complex medical needs that come with having a chronic illness. Even if I could have found a primary care doctor near me, there aren’t many specialists in my area and there haven’t been for a long time.  

Ideally, governments and hospital systems will work to expand rural healthcare networks over the coming years. But patients, unfortunately, can’t count on that happening. Until we see real progress, the answer seems pretty straightforward: Using the tools we have right now to solve the problems we face today. 

For many rural patients, that means using telehealth appointments to their full potential. Even if it means sometimes attending them in a truck stop parking lot. 

AI in Healthcare: Designed for Progress or Profit?

By Crystal Lindell

As a pain patient, I take a controlled substance medication, which means every single time I need a refill I have to contact my doctor. 

It doesn’t matter that this refill comes every 28 days and that I have been getting it refilled every 28 days for years. It doesn’t matter that my condition has no cure, and that I will most likely need this medication refilled every 28 days for the foreseeable future.

No. I have to make sure to contact my doctor and specifically ask for it, every single time.  

There are ways to automate this process. They could give me a set number of automatic refills and have them sent to the pharmacy every 28 days. If we were even more practical, they could just give me 60 to 90 days worth of pills at a time, and save me from multiple trips to the pharmacy. 

But because of insurance rules, hospital policies and opioid-phobia legislation, all of those options are impossible. In fact, they actively work to make a process that could be automated into something that has to be done manually. 

Which is why I’m so skeptical of Artificial Intelligence (AI) in healthcare. 

The promise of AI is that it can automate away the mundane tasks so many of us hate doing. Many health related tasks could easily be automated. They just purposefully are not. 

The hospital I go to for my medical care, University of Wisconsin-Madison, recently released a report filled with recommendations for how AI should be integrated into healthcare. It was based on a recent roundtable discussion that included healthcare professionals from across the country. 

But while the participant list included doctors, IT staff, policy experts, and academics, there was one very glaring absence – the list of participants included exactly zero patients. 

UW Health was one of the organizers for the panel, along with Epic, a healthcare software developer. Their report includes some seemingly good recommendations. 

They ask that AI be used to supplement the work that doctors, nurses and other healthcare staff perform, as opposed to replacing the staff altogether. They say AI could be a great tool to help reduce staff burnout. 

They also recommend that the technology be set up in such a way that it also helps those living in rural areas, in addition to those in more metropolitan ones. The report also emphasizes that healthcare systems should prioritize “weaving the technology into existing systems rather than using it as a standalone tool.”

Additionally, the report stressed the need for federal regulations to “balance space for innovation with safeguarding patient data and ensuring robust cybersecurity measures.”

I don’t disagree with any of that. But it’s a little frustrating to see those recommendations, when some of those problems could already be solved if we wanted them to be. 

And while the panel’s report is new, UW Health’s use of AI is not. 

In April, UW Health announced that they were participating in a new partnership program with Microsoft and Epic to develop and integrate AI into healthcare. 

At the time they said the innovation would be focused on “delivering a comprehensive array of generative AI- powered solutions… to increase productivity, enhance patient care and improve financial integrity of health systems globally.”

That’s the real motivation to bring AI into healthcare: make more money by improving “financial integrity.” Something tells me that AI won’t be used to lower patient’s bills though. 

UW Health also recently shared that its nurses were using AI to generate responses to patients. Over 75 nurses were using generative AI, which assisted them in creating more than 3,000 messages across more than 30 departments.

“This has been a fascinating process, and one I’ve been glad to be part of,” said Amanda Weber, registered nurse clinic supervisor, UW Health. “I have found having a draft to start from helpful, and I’m glad I could provide feedback on improvements and features to ensure this can be a good tool for nurses and have a positive impact on our patients.”

Before I even knew about this program, I had a feeling that AI was involved. 

Recently, when I messaged my doctor about my upcoming refill, I received an overly-formal, odd response that felt very much like generative AI writing to me. Which is fine. I honestly don’t mind if my doctor saves time by using AI to respond to patient emails. Heck, I myself have used AI to write first drafts of some emails. 

But my doctor and his staff wouldn’t even need to reply to my emails if he was allowed to set up automatic refills of my long-time medication instead. 

There are many ways to improve health care, and tools like generative AI are likely among them. But AI can’t solve problems that exist on purpose. 

Unless patients are at the forefront of the conversations about these tools, I fear they’ll only be used to solve the sole problem hospital administrators actually care about: how to make more money. 

What Doctors Really Mean When They Say It’s an ‘Easy Surgery’

By Crystal Lindell

Back in 2009, I had an “easy surgery” to get my gallbladder removed after multiple excruciating gallbladder attacks. Before the operation, my surgeon went on and on about how easy the surgery would be. He emphasized multiple times how simple it was.

I went into that operating room completely underestimating what I would experience when I came out of the anesthesia. 

I woke up from that surgery vomiting so much that the single hour I was scheduled to spend in post-op recovery turned into eight hours. And instead of the three days I was told that I’d need for recovery at home, I spent seven days in excruciating pain, unable to get off the couch without wanting to scream. 

That’s when I realized that a “simple” surgery just means simple for the doctor to perform. It’s also when I started to realize that this logic applies to all the ways doctors explain health issues. 

In fact, when doctors describe any health issues, they aren’t talking about the patient’s experience at all – they are talking about how they themselves experience it. They love to use terms like mild, simple, and easy. But patients should understand that they are not describing the patient experience when they say these things. 

Mild case of the flu? That just means they don’t have to see you in person to treat you. But it could still mean you’re unable to get out of bed for a month. 

Easy surgery? That means it’s easy for them to perform. It has no relation to how difficult recovery will be for you. 

Post-op discomfort? Yeah, it’s super uncomfortable for the doctor to have to see you in so much excruciating pain before they send you home in agony. 

This even applies to the ways doctors often describe medications. They’ll often say a prescription is “a very strong drug” – but only because it’s difficult for them to prescribe because of things like health insurance denials and DEA paperwork. Meanwhile, the side effects from what they call a “common” generic medication could ruin your body and your life. 

This is a lesson that patients often have to learn the hard way. I have. But now, as someone with a chronic illness, I understand. 

While I have only been hospitalized overnight one time since I first got really sick in 2013, doctors would tell you this means I have a “mild” case of intercostal neuralgia and that my Ehlers-Danlos Syndrome is “mild.”

Yet chronic pain and EDS have impacted every single aspect of my life. From my career, to my love life, to how often I’m able to shower. It’s impacted what clothes I can wear because tight shirts are so painful that I can’t leave the house if I try to wear them. I’ve had to quit jobs because I couldn’t work through the pain. And the guy I was dating when I first got sick eventually broke up with me because my health issues were too much for him to handle.

Hearing doctors describe my health issues as “mild” feels both insulting and disorientating. But worse than that, it can also impact how willing doctors are to investigate and treat my health problems. It’s likely why, despite how urgent chronic pain has been for me from the start, it still took doctors five full years to even diagnose me with Ehlers-Danlos Syndrome. As long as I didn’t need emergency medical care, there was no rush on their end. 

I’m not sure it’s worth it for patients to push back on these types of health descriptors. In my experience, it doesn’t usually change how doctors are responding to you. But understanding it yourself – knowing that how a doctor describes your health problem isn’t necessarily indicative of how severe it is to experience it as the patient – can itself be freeing. 

And sometimes, you may even run into a good doctor, who makes this type of thing clear to you as a patient. They are rare, but they do exist. 

You can also take comfort in the fact that if the doctors who don’t make it clear to the patient ever have to endure what you’ve been through, they will come to understand how inaccurate and insulting their descriptors were. Afterall, nothing about something like surgery is ever easy for the patient.

AARP Should Stop Blaming Pain Patients for the Opioid Crisis

By Carol Levy

Toast and jam. Cake and coffee. Peanut butter and jelly. Pain patients and the opioid crisis.

One of these things is not like the others. But to most people, they all go together. Even when research shows little correlation between opioid prescriptions and overdose deaths.

We’ve been hearing that same old tired narrative for years, often from “experts” who speak with absolute certainty.

“Two major facts can no longer be questioned. First, opioid analgesics are widely diverted and improperly used, and the widespread use of the drugs has resulted in a national epidemic of opioid overdose deaths and addictions,” Nora Volkow, MD, Director of the National Institute on Drug Abuse, and Thomas McLellan, PhD, founder of the Treatment Research Institute and a scientific advisor to Shatterproof, wrote in a joint op/ed in The New England Journal of Medicine in 2016.

“Second, the major source of diverted opioids is physician prescriptions. For these reasons, physicians and medical associations have begun questioning prescribing practices for opioids, particularly as they relate to the management of chronic pain.”

We now know that prescription opioids play a minor role in the overdose crisis and that only about three-tenths of 1% are actually diverted. Illicit fentanyl and other street drugs are responsible for the vast majority of overdose deaths, not pain medication.

But the same tired and misinformed narrative continues, with patients who need opioids paying the price when their doses are reduced or taken away.

Recently, the American Association of Retired Persons released an AARP bulletin, with the main headline being “The War on Chronic Pain.” Wow!  I was excited. Maybe some new information that I can use?

My heart sank as I read the article and quickly came upon these words: “Our attempts to treat chronic pain with medication have led to an opioid abuse epidemic so severe that overdoses are now among the leading causes of death for adults ages 50 to 70. “

The stereotype wins again. Prescription opioids caused the crisis.

I was curious to see what else AARP had to say about pain management and found several articles over the years with a glaringly obvious bias against opioids.

“Americans over 50 are using narcotic pain pills in surprisingly high numbers, and many are becoming addicted,” a 2017 AARP article warned. “A well-meant treatment for knee surgery or chronic back troubles is often the path to a deadly outcome.”

The article went on to claim that older Americans had become “new opioid dealers” who fueled the opioid crisis by “selling their prescription painkillers to drug pushers.”

A 2019 AARP article took a more nuanced approach to pain, claiming that “science was homing in on better ways to treat it,” such as non-opioid drugs, exercise and cognitive therapy.

“If the opioid crisis has provided an excellent example of how not to treat chronic pain, advances in brain science are leading to a fuller understanding of how to more safely find solutions,” AARP said.

Five years later, science has brought us no real solutions. Opioids are still the most potent and reliable medications for pain. For patients in severe pain, they are often the only treatment that works.

The sad part is, if AARP had simply asked the American Medical Association, they would have found that prescription opioids are not the main cause of overdoses and deaths.

In 2021, the AMA reported that opioid prescriptions had fallen by over 44%, yet drug overdoses and deaths were still rising. “The nation’s drug overdose and death epidemic has never just been about prescription opioids,” said then-AMA President Gerald Harmon, MD.

In a 2023 report, the AMA warned again that “reductions in opioid prescribing have not led to reductions in drug-related mortality.”

Why is that not worth including in AARP’s latest sensational reporting on the opioid crisis?

I read this line the other day: “There is no word for infinite pain.” That rings very true for me, probably for many of us. Chronic pain often does not end. We may have a diagnosis, some condition or disorder that causes pain, but there is no good word for pain that is unending and unrelenting.

AARP’s continuing portrayal of many seniors as addicts or drug dealers pushing “narcotic pain pills” is not helpful. Repeatedly labeling us like that has had devastating consequences on pain patients around the country. 

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. 

Selling Us Short With Long COVID

By Cynthia Toussaint, PNN Columnist

After four years of diligently following CDC guidelines to avoid COVID-19 like the plague, it finally caught up with me. And, like my doctors presumed, I now have Long COVID.

That being said, two months into what I was assured would be worse than a living death, I have to shake my head at how colossally the powers that be underestimate the toughness of women in pain.

After my partner John and I had to cancel a 2020 dream trip to Iceland due to my cancer and the COVID shutdown, we bunkered down because my doctors said I had no wiggle room with chemotherapy – and that likely saved my life.

When I had remission from cancer a second time in 2022, those same doctors shared that while the COVID virus might no longer end me, I’d surely get Long COVID, which would leave me barely able to breathe or move for the rest of my life. This was backed up by many articles and programs that I devoured. I felt doomed.

These were some of my darkest, most dire years – which says a hell of a lot. Already isolated for 44 years from profound disability caused by Complex Regional Pain Syndrome, I felt ever more the odd one out, still wearing a mask and saying no to virtually every invitation.

But with time, the expert prognosis wasn’t adding up – as I watched most of my friends with pain and other chronic illnesses get COVID, only to recover and return to their baseline of “normal.”

Iceland was still beckoning – it’s glaciers, waterfalls, active volcanoes, charming capital city, unique horses and white nights. Come spring this year, my desire trumped all else. I yearned to be amongst the living again, so John and I booked a trip for early June.

We followed the recommended CDC guidelines for travelers, only to land in Iceland sick as dogs. So much for playing by the rules!

Being out of country, we didn’t have any COVID tests, and because we weren’t on our deathbeds as promised, we assumed we’d picked up a run-of-the-mill flu bug.

Flinging off our high temps, chills and fatigue (to name just a few of our symptoms), there was no staying in bed slurping chicken broth and taking Tylenol for us. We muscled on through our trip – and fell in love with this other-worldly land.

Testing Positive

A couple days after our return, John took what I considered a pointless COVID test – and I was floored when he shouted that we’d joined the ranks of the infected by testing positive. More surprising, on day ten of what was supposed to be a worse-than-death sentence, I was functioning fairly well. I could breathe fine and was swimming most of my laps. No hospital, no ventilator, no ICU, no death certificate.

Yes, I’ll give the docs a point or two, if you’re keeping score at home. Eight weeks post-infection, I’ve developed the aforementioned Long COVID, which has triggered my chronic fatigue syndrome, accompanied by a litany of life-compromising symptoms that ebb and flow.

Sometimes I feel fine and other times I uncharacteristically fall asleep from post-exertion malaise. I’m burdened by debilitating migraines and dizziness, and am still hoarse and wonder when I’ll be able to sing clearly again. Still, unless something changes drastically, long-hauling didn’t come as advertised.   

So now I’ve moved from fear of the worst to hope for better days ahead. But with that hope, I’m still mightily pissed off.

I’m livid that doctors and researchers put me into a catastrophic, doomsday mindset during the pandemic. The picture they painted for people like me -- with high-impact chronic illness and a cancer diagnosis -- was black as ink, with no exceptions.

I lived accordingly with terror, dread, fear, high-anxiety and isolation-induced depression. Missed holiday events, get-togethers and no traveling rounded out the experience.

Not being around people, while going through cancer twice, was the apex of these dark years. That inhumanity strained my ability to heal when I needed it most.

Humans are social creatures and inclusion is how we’ve evolved so that we can feel safe, contented and well. Without connection, our mental health suffers, which is just as important as our physical health.

I’m now critically reassessing the necessity of my “bunkering years.” Were they needed? Or did I spend four and a half years of my hard-fought-for life alone for no damn good reason?

CYNTHIA GREETS A FRIEND IN ICELAND

I recently met two lovely women, both with pain and autoimmune issues, who recovered from Long COVID in less than a year, no worse for the wear. I wonder why none of the experts told me that recovery was a possibility, even a likely one. Why was I only given the worst-case scenario? Safe to say if I’d had the facts, I would have poked my head out of the hole far sooner than I did. And when you’re still in the red zone with cancer, every day, every outing COUNTS.

While it’s super hard to watch friends and family recover quickly from COVID, while I trudge on sick and with no end in sight, we with high-impact pain know our lot is always a ton more challenging than normies. That’s money in the bank, a sure bet. Luckily, we’re experts at suffering and coming out the other side.  

But let’s not bury the lead. I’m freer than I’ve been in years. These days I’m doing less mask wearing, so bring on the intimate get-togethers in a cramped, under-ventilated house (ok, ok, maybe after the summer surge next to an open window.) Hugging, kissing and touching those near and dear are back on my to-do list.

Before COVID, John would joke: “I always know when Cynth’s worked a room – because everyone’s got lipstick on their face.” Going forward, look out for the high-gloss and ruby red.       

Whoa, Nelly! Let me be clear. How one takes on COVID is an individual experience – and I respect everyone’s choice. I know women in pain who’ve never put a mask on or vaccinated, and others who plan to mask-up for the rest of their lives while counting the days till the next booster.

We all need to do what makes us feel safe. And, like me, sometimes our choices change with time and information.       

My smile has a deeper meaning these days. Exiting my Y just after our return from Iceland, a friend I adore at the front desk, Solange, excitedly commented, “You look much better, Cynthia!”

I had to laugh, while sharing that I was still getting over COVID. When she quizzically stared, it then hit me. I wasn’t wearing a mask!

A moment of wow struck us both. I’ve known this woman for two years and we’ve shared countless conversations, but that was the first time she’d ever seen my face.              

Women in pain, we’re tougher than the rest. The doctors, the researchers, the experts, the “know-it-alls” always seem to sell us short, either under-protecting because they think we make a mountain out of molehill – or over-protecting because they don’t think we know what’s in our own best interest.

Screw ‘em. They don’t get us, never will. And a once-in-a-century pandemic isn’t going to knock us out. That’s something to smile about.   

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 Complex Regional Pain Syndrome (CRPS) and multiple co-morbidities for over four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

Anxiety Is Not Just an Emotion

By Mara Baer

“Anxiety” made her debut last month on the silver screen in the “Inside Out” sequel and I jumped at the chance to see it with my 12-year-old daughter.

"Inside Out 2" is an imaginative exploration of the human experience, centered around a girl named Riley, set primarily within her mind, where her emotions live in “Headquarters” and guide her through life's experiences. Both the original movie and sequel provide an insightful look at the inner workings of the mind with humor and heart. Although geared towards kids, they provide some great lessons for adults too.

As someone who experiences anxiety, I was interested to see how Disney and Pixar portrayed this character. Anxiety can be an alarming reaction to one’s environment, causing uncertainty, worry and fear.

People like myself who live with chronic pain have elevated anxiety symptoms. Because the region of the brain responsible for generating pain is also partially responsible for anxiety, these connections should not be surprising. I know when I am having anxiety, but it is often hard to understand.

Inside Out’s new character drew me to the story of Riley, a 13-year-old girl in the throes of puberty, who is learning how to manage new feelings. The first movie introduces us to the characters of Joy, Sadness, Fear, Anger and Disgust, with each character’s physicality depicting their primary emotion.

In the sequel, five new emotions show up, just as Riley’s pubescent hormones take hold. In addition to Anxiety, there are Envy, Embarrassment, Ennui, and Nostalgia:

We can all recall our teenage years, when anxiety, envy, embarrassment and ennui became frequent visitors and often defined our interactions. Nostalgia pops up on occasion, to be told by the others that it isn’t her time yet and that she should come back later. Next movie, perhaps?

Anxiety is an eye bulging, shaky, intense character aglow in shades of orange. Her wiry hair and floating eyebrows make clear that Anxiety is intense, alert, and always “on.” While Anxiety’s goal in the movie is to keep Riley safe and protected, she eventually becomes destructive, pushing Riley’s limits in a hockey game in the name of “winning” and at the cost of her true self.

As someone known as a planner (sometimes to a fault), I relate to Anxiety’s need to think ahead and prepare for every problematic scenario, sometimes at the expense of my underlying values. This is the tension with anxiety, always pushing us to the limits for a cause, even at the expense of the individual experiencing it.

Knowing this tension and the shared brain region informing both anxiety and chronic pain got me thinking. What other ways are these two connected? 

As I explained in my article in Chronic Pain Chats, when we experience pain for more than three months, neural pathways can be altered, creating pain signals that are very difficult to turn off. Anxiety can be similar, sending negative feelings and thoughts into a spiral that can feel uncontrollable.

In Inside Out 2 (spoiler alert), Anxiety continues to push Riley at hockey camp to help her achieve success and build new friendships. In doing so, she ignores old friends, begins to fight with her parents, and eventually injures a friend in a game meant to determine if she would make the high school team. She is laser-focused on winning and loses touch with who she fundamentally is.

Chronic pain can do this too, becoming the center of our journey, disrupting our life path, our relationships, and who we are. Both anxiety and pain have robbed me at times of feeling like my true self. Riley experiences the same with Anxiety.

The similarities do not end here. Both anxiety and chronic pain are associated with physical sensations, feeling overwhelmed, excessive worry or fear, negativity, sleep problems, and avoidance. Anxiety can also exacerbate pain levels and lower pain thresholds. 

When Anxiety goes into overdrive during that hockey game, Riley experiences a panic attack. The audience watches as Anxiety goes into a trance-like state, trying to protect Riley and “fix” what has gone wrong, eventually sending Riley to the penalty box in a very powerful scene.

I saw my own anxiety in Riley’s, and feelings of sadness overcame me as I watched how strong and influential my own anxiety can be. That scene in the movie stuck with me, so much that it prompted me to investigate the anxiety/pain relationship and write this article. While I understand a bit better now why anxiety must exist, it can be distracting at best and debilitating at worst. 

How I Manage Anxiety

The key to managing anxiety is how I interpret its function in my life, starting with how I define it.   

While the movie portrays Anxiety as an emotion, there is some debate in the literature about whether it is. Some experts define anxiety as a state of being with feelings at its root -- what’s been called a “visceral form of emotional resistance.”

In essence, when anxiety is happening, it is because our brain is trying to protect us from a fundamental emotion that feels scarier and more threatening than anxiety itself (i.e., fear). Chronic pain is similar, sending a signal to try protect us from physical harm, even if the threat of harm is no longer there.

Other experts see anxiety as a  secondary emotion, meant to replace a more difficult primary emotion. Dr. Lauren Gorog, a Clinical Health Psychologist in Colorado, defines anxiety as a conditioned response (think mental, emotional, behavioral response) to fear. She says anxiety is typically driven by deep beliefs of inadequacy and our human tendency to “awfulize” an unwanted outcome. That can lead to a physiological and psychological state of hyperarousal that produces a distressed emotional state, with a host of mental, physical, and behavioral symptoms that negatively impact virtually all parts of our lives.

While the debate over anxiety’s role will no doubt continue, I choose to NOT define my anxiety as a simple emotion, because it takes away my ability to do something about it. Like pain, not all anxiety is bad, and both have protective factors. But we can still choose how we respond to each. 

Irrespective of whether we call anxiety an emotion or not, it is grounded in one’s mindset and can change. In fact, the best way to counter anxiety is to “feel your feelings.” Many people with chronic pain do not do this, pushing away feelings that harbor themselves in the body, which leads to more pain for longer periods of time.

Interestingly, similar strategies can be used to address chronic pain, including somatic tracking and Pain Reprocessing Therapy, which focus on paying attention to pain without judgement or fear, which has been proven to lead to less pain. 

At the end of the Inside Out 2, Joy tells Anxiety: “You don’t get to choose who Riley is. You need to let her go.”

Anxiety doesn’t choose who I am. Neither does pain. I will make sure of it. 

Mara Baer lives with Thoracic Outlet Syndrome, a nerve entrapment condition that causes severe pain. Mara is the founder of AgoHealth, a health policy consulting firm. She also serves on the Science and Policy Advisory Council for the National Pain Advocacy Center and publishes Chronic Pain Chats, a free newsletter.

Older Americans Worried About Rising Cost of Healthcare

By Judith Graham, KFF Health News

What weighs most heavily on older adults’ minds when it comes to health care?

The cost of services and therapies, and their ability to pay.

“It’s on our minds a whole lot because of our age and because everything keeps getting more expensive,” said Connie Colyer, 68, of Pleasureville, Kentucky. She’s a retired forklift operator who has lung disease and high blood pressure. Her husband, James, 70, drives a dump truck and has a potentially dangerous irregular heart rhythm.

Tens of millions of seniors are similarly anxious about being able to afford health care because of its expense and rising costs for housing, food, and other essentials.

A new wave of research highlights the reach of these anxieties. When the University of Michigan’s National Poll on Healthy Aging asked people 50 and older about 26 health-related issues, their top three areas of concern had to do with costs: of medical care in general, of long-term care, and of prescription drugs. More than half of 3,300 people surveyed in February and March reported being “very concerned” about these issues.

In fact, five of the top 10 issues identified as very concerning were cost-related. Beyond the top three, people cited the cost of health insurance and Medicare (52%), and the cost of dental care (45%). Financial scams and fraud came in fourth place (53% very concerned). Of much less concern were issues that receive considerable attention, including social isolation, obesity, and age discrimination.

In an election year, “our poll sends a very clear message that older adults are worried about the cost of health care and will be looking to candidates to discuss what they have done or plan to do to contain those costs,” said John Ayanian, director of the University of Michigan’s Institute for Healthcare Policy and Innovation.

Older adults have good reason to worry. One in 10 seniors (about 6 million people) have incomes below the federal poverty level. About 1 in 4 rely exclusively on Social Security payments, which average $1,913 a month per person.

Even though inflation has moderated since its 2022 peak, prices haven’t come down, putting a strain on seniors living on fixed incomes.

Meanwhile, traditional Medicare doesn’t cover several services that millions of older adults need, such as dental care, vision care, or help at home from aides. While private Medicare Advantage plans offer some coverage for these services, benefits are frequently limited.

‘Difficult to Afford Basic Necessities’

All of this contributes to a health care affordability squeeze for older adults. Recently published research from the Commonwealth Fund’s 2023 Health Care Affordability Survey found that nearly a third of people 65 or older reported difficulty paying for health care expenses, including premiums for Medicare, medications, and expenses associated with receiving medical services.

One in 7 older adults reported spending a quarter or more of their average monthly budget on health care; 44% spent between 10% and 24%. Seventeen percent said they or a family member had forgone needed care in the past year for financial reasons.

The Colyers in Pleasureville are among them. Both need new dentures and eyeglasses, but they can’t afford to pay thousands of dollars out-of-pocket, Connie said.

“As the cost of living rises for basic necessities, it’s more difficult for lower-income and middle-income Medicare beneficiaries to afford the health care they need,” said Gretchen Jacobson, vice president of the Medicare program at the Commonwealth Fund. Similarly, “when health care costs rise, it’s more difficult to afford basic necessities.”

This is especially worrisome because older adults are more prone to illness and disability than younger adults, resulting in a greater need for care and higher expenses. In 2022, seniors on Medicare spent $7,000 on medical services, compared with $4,900 for people without Medicare.

Not included in this figure is the cost of assisted living or long-term stays in nursing homes, which Medicare also doesn’t cover. According to Genworth’s latest survey, the median annual cost of a semiprivate room in a nursing home was $104,000 in 2023, while assisted living came to $64,200, and a year’s worth of services from home-health aides cost $75,500.

Many older adults simply can’t afford to pay for these long-term care options or other major medical expenses out-of-pocket.

“Seventeen million older adults have incomes below 200% of the federal poverty level,” said Tricia Neuman, executive director of the Program on Medicare Policy for KFF. (That’s $30,120 for a single-person household in 2024; $40,880 for a two-person household.) “For people living on that income, the risk of a major expense is very scary.”

How to deal with unanticipated expenses in the future is a question that haunts Connie Colyer. Her monthly premiums for Medicare Parts B and D, and a Medigap supplemental policy come to nearly $468, or 42% of her $1,121 monthly income from Social Security.

With a home mortgage of $523 a month, and more than $150 in monthly copayments for her inhalers and her husband’s heart medications, “we wouldn’t make it if my husband wasn’t still working,” she told me.

James’ monthly Social Security payment is $1,378. His premiums are similar to Connie’s and his income fluctuates based on the weather. In the first five months of this year, it approached $10,000, Connie told me.

Many Seniors Reluctant to Ask for Help

The couple makes too much to qualify for programs that help older adults afford Medicare out-of-pocket costs. As many as 6 million people are eligible but not enrolled in these Medicare Savings Programs. Those with very low incomes may also qualify for dual coverage by Medicaid and Medicare or other types of assistance with household costs, such as food stamps.

Older adults can check their eligibility for these and other programs by contacting their local Area Agency on Agency, State Health Insurance Assistance Program, or benefits enrollment center. Enter your ZIP code at the Eldercare Locator and these and other organizations helping seniors locally will come up.

Persuading older adults to step forward and ask for help often isn’t easy. Angela Zeek, health and government benefits manager at Legal Aid of the Bluegrass in Kentucky, said many seniors in her area don’t want to be considered poor or unable to pay their bills, a blow to their pride.

“What we try to say is, ‘You’ve worked hard all your life, you’ve paid your taxes. You’ve given back to this government, so there’s nothing wrong with the government helping you out a bit,’” said Zeek.

And the unfortunate truth is there’s very little, if any, help available for seniors who aren’t poor but have modest financial resources. While the need for new dental, vision, and long-term care benefits for older adults is widely acknowledged, “the question is always how to pay for it,” said Neuman of KFF.

This will become an even bigger issue in the coming years because of the burgeoning aging population.

There is some relief on the horizon, however: Assistance with Medicare drug costs is available through the 2022 Inflation Reduction Act, although many older adults don’t realize it yet. The act allows Medicare to negotiate the price of prescription drugs for the first time. This year, out-of-pocket costs for medications will be limited to a maximum $3,800 for most beneficiaries. Next year, a $2,000 cap on out-of-pocket drug costs will take effect.

“We’re already seeing people who’ve had very high drug costs in the past save thousands of dollars this year,” said Frederic Riccardi, president of the Medicare Rights Center. “And next year, it’s going to get even better.”

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