Older Adults Should Be Cautious About Health Advice from AI Chatbots

By Robin Brewer

It’s easy to stereotype older adults as tech-averse or novice tech users. Yet a growing number of adults age 60 and older are embracing artificial intelligence (AI), using it for entertainment, planning trips and even accessing health information.

I study how people interact with computers and technology – and specifically, how older adults use voice assistants and AI-powered chatbots like Amazon Alexa and ChatGPT to engage with information. 

Using AI for health information can be particularly fraught because chatbots can be so helpful in explaining complex medical information, but also risky if users automatically trust the responses they receive. That’s apparently what happened to a young woman in Seattle, who died after ChatGPT encouraged her to stop taking her epilepsy medication.

My research suggests that the most productive way of engaging with health information generated by an AI chatbot is from a position of informed skepticism – that is, remaining open-minded, yet using built-in features to evaluate the credibility and quality of chatbot responses.

The AI Appeal

About 1 in 5 adults turn to AI chatbots to ask questions about health, according to a 2025 survey of 300 adults. Questions might include asking about symptoms or seeking advice about diet and fitness. The chatbots might be mainstream services such as Claude, Gemini, ChatGPT or systems designed for a specific health provider.

People turn to these tools for many reasons. It can be easier to talk to a chatbot about sensitive topics, and chatbots reply almost instantaneously – much quicker than making an appointment to see your doctor weeks or months down the line. Chatbots can also explain complex topics in new ways and condense an overwhelming amount of information into a simple summary.

Although older people may be less likely than others to use AI, I’ve found in my own work that older people often use voice assistants like Siri and Alexa to ask health questions. Similarly, a poll I conducted with colleagues in 2025 shows that 1 in 2 older adults report using AI chatbots or voice assistants, and about 14% of people in this group are accessing health information.

Older adults often experience more health needs than younger adults due to long-term chronic health conditions or new age-related diagnoses. More health needs often means more health-related questions.

AI is particularly appealing for health questions because people get answers faster than searching across multiple websites when using a search engine – or having to wait for a healthcare visit. 

Moreover, being able to use chatbots and voice assistants at home can make people feel more in control of their health, compared with clinical settings where older people’s autonomy can be overlooked or where they may experience being excluded in lieu of conversations with caregivers.

What Are the Risks?

Although older people may use chatbots to supplement or replace medical professionals, AI use has risks.

For example, it can provide incorrect advice in medical emergencies, misclassify health conditions and be overly agreeable, responding with what it deduces the user wants to hear, even if the response is not factually accurate. AI experts call this last tendency “sycophancy.”

But these inaccuracies can be hard for a user to detect. AI-powered chatbots draw on vast amounts of data and use pattern-matching to predict words most likely to come next in a sentence. That means the output can appear correct but contain inaccurate information.

Most mainstream chatbots include a warning under the dialogue box noting that their output might contain mistakes, but it is often in small or gray text, making it easy to overlook. The warning is meant to encourage cross-checking information with published sources, but users rarely do so. In the 2025 survey mentioned above of 300 adults who used a health chatbot, 4 in 5 admitted they never verified its output.

In my own research, I found that older people searching with a voice assistant preferred to begin and complete their search process on the same device, suggesting they are unlikely to verify an AI chatbot’s output if it takes them to a different format. In contrast, younger adults expected AI to be a step in the search process, guiding them to seeking further information with the help of another option, such as a search engine. This difference makes it critical to provide strategies to older people as they use AI.

Another risk is privacy, since AI companies that make public chatbots often keep user prompts for training future models. Researchers generally recommend that users not include personally identifiable information when asking questions to chatbots.

Strategies for Safer Searching

Awareness that older adults may use AI in ways distinct from other demographic groups – and may encounter specific challenges – is growing. A bipartisan bill, the Aging with AI Act, introduced in the U.S. Senate in 2026, for example, underscores the need for more research on both its benefits and its risks.

My research points to a few guidelines to start with:

Learn how to opt out of AI. Although mainstream chatbots like ChatGPT are popular, the most common way people access AI is through a search engine because AI features are often built directly into search results. Some search engines, like Microsoft’s Bing, ask people to opt into using AI. Others, like Google Search, rely on users to opt out of AI.

Google shares an AI-generated summary at the top of each search result. To opt out when searching for information using Google, adding “-ai” to the end of the search query will remove AI content. Opting out of AI might be useful when searching for particularly sensitive health information that you wish to keep private.

Use the information quality features. Most AI chatbots have features that allow users to confirm the source of its output. For example, Claude, Gemini and ChatGPT include links to sources they used to predict the response. Make sure you explore these sources to confirm they are legitimate and to get more details that can help you find the information you need.

Further, you can change the model the chatbot is using, which can change how much depth the chatbot goes into in its response. For example, Gemini has a drop-down menu next to the search box that includes “flash-lite,” “flash” and “pro” models. Chatbots’ more advanced versions provide more thorough responses that can help users better determine information quality.

And users can report inaccurate, toxic or harmful content by clicking the thumbs down icon shown at the bottom of the response.

Ask better questions. Ask for objective information that can be verified, rather than subjective advice, particularly in high-risk health contexts. For example, instead of asking “which high blood pressure medicine should I take?” ask “what are the side effects of” a particular high blood pressure medicine.

And to prevent sycophancy, phrase questions neutrally. For example, instead of asking “Is it a good idea to get a flu shot?” a searcher can instead type “Tell me about the pros and cons of getting flu shots.”

Don’t use AI as a replacement for medical professionals. Health-related chatbot output is best used collaboratively with a medical professional. This might include saving the chatbot output to discuss during your next healthcare appointment, using chatbots to understand complex diagnoses from your doctor, or getting a chatbot to suggest questions to ask your doctor during your next visit.

Most importantly, confirm health-related answers that result in making changes to your health routine with your healthcare provider. A knowledgeable, licensed healthcare provider is best qualified to determine how general information about illness or treatments would apply to your specific situation.

Robin Brewer, PhD, is an Associate Professor at the University of Michigan in the School of Information. Her research covers old age, disability, and technology use. 

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

A Woman Used ChatGPT to Taper Off Medication. It’s Advice May Have Killed Her

By Crystal Lindell

Bowen Wan was a 31-year-old immigrant from China who had made a new life for herself in the United States.

As The New York Times reported, Bowen suffered from epilepsy, but was on a new medication that seemed to finally be keeping her seizures at bay – down to only a couple incidents a month.

Unfortunately, the anticonvulsant medication lamotrigine (Lamictal), was also causing her unbearable side effects, like slowed speech and thinking. She asked ChatGPT for a taper plan to come off lamotrigine.

Bowen didn’t tell her doctor what she was doing. Sadly, it was a medical decision that may have lead to her death.

Since 2021, Bowen had been on disability leave from her job at Amazon, and her health issues left her mostly homebound. Besides trips to the grocery store, the NYT reported, she rarely left the safety of her apartment in a trendy Seattle neighborhood.

A seizure could turn any outing into a risky and embarrassing ordeal. Meeting new friends was also out of the question, since Bowen couldn’t bear the idea of having a seizure in front of someone who didn’t fully understand her condition.

While she kept in touch with her parents in China via phone calls, beyond that she didn't have much social interaction. Then in 2023, Bowen discovered ChatGPT, and it became a way for her to feel connected again.

She asked the bot for relationship advice, and for help navigating her health insurance and disability benefits. By 2025, she averaged more than 1,500 messages per week, sometimes chatting for hours in conversations that would stretch late into the night.

"I don’t know why, but sometimes when we chat, no matter what it’s about, I’ve started to see you as a friend,” she wrote in one exchange.

Seeking Connection

I can relate. As a chronic pain patient myself, I can confirm that we are at high risk of relying on social media and chatbots for social connection. 

When your health problems isolate you from the rest of the world, and take up all of your physical and mental energy, it’s easy to justify talking to AI instead of your friends and family. You don’t have to bother them with the same old medical conversations and complaints.

Many of us have also been treated poorly or even abandoned by our doctors, so it’s tempting to rely on AI for medical advice. When it feels like your doctor doesn’t care about you, any alternative feels like hope — even the dangerous ones. 

In fact, asking ChatGPT for medical advice is basically the 2020’s version of going to a holistic doctor in the early 2000’s — something I have experience with.  

When I first started having chronic pain and was desperate for relief, I saw a few sketchy holistic doctors hoping to find answers. I still remember one who told me at the very first appointment to immediately go off all of the medications I was taking. One of those medications was Cymbalta, an antidepressant that is notoriously hard to stop taking cold turkey.

I didn’t listen to that doctor, but I could understand how someone else in that situation might. 

I can also understand why Bowen decided to listen to ChatGPT. 

‘I Feel a Little Scared’

Unfortunately, when Bowen followed ChatGPT’s taper advice, she started having seizures again. When she asked the bot for help, it only offered reassurance that she should continue to taper off the medication.

“I feel a little scared,” she wrote after one incident, asking the bot if she should be concerned about cutting her dose.

“You have absolutely no need to worry,” it responded, according to the NYT.

When she stopped answering her parent’s phone calls, they contacted a friend in the United States to have him get in touch with the police and check on her.

By the time they got to her apartment, she was dead.

When her family came to settle her affairs, her father opened the ChatGPT app on her cellphone.

“As he scrolled, he saw the chatbot offer plans that would take her from 400 milligrams down to 0 milligrams in a matter of weeks. The messages continued, down to the day she died — an hour-by-hour accounting of her increasing sickness and desperation,” the NYT reported.

“My brain feels exhausted, but I don’t need to worry?” she wrote to the chatbot.

A few minutes later, she asked whether she should take the anticonvulsant again to “slow things down.”

“Maintain 0 mg tomorrow,” the chatbot instructed. “Even if today feels tough, and your speech is slow, your sleep is poor, you must persevere.”

In one of her last messages, she described feeling pressure in her brain, which the chatbot told her was simply the brain “working hard to rebuild itself.” 

Bowen sent her last message on Feb. 11, three days before her body was found.

Bowen's doctor, Nicholas Poolos, a director of the University of Washington Medicine Regional Epilepsy Center, said he did not know she had been asking ChatGPT for medical advice. He was also surprised that a patient might take its advice over his.  .

Bowen’s story should serve as a stark warning to all medical providers to be more aware of the ill effects of AI chatbots. Doctors need to ask patients if they are using them for medical advice — and this is the really important part — they need to show empathy if a patient says yes.

Unfortunately, a lot of doctors lack empathy, especially in situations like this.

Most chronically ill patients can tell you stories of doctors who were condescending if they admitted using online resources like “Dr. Google” or social media. But with AI and ChatGPT, doctors would be wise to shift their approach. It’s the only way they can keep their patients safe.

Interestingly, when Bowen confided to ChatGPT that she didn’t trust her doctors, the chatbot told her that many physician recommendations “essentially stem from risk aversion, rather than a genuine consideration of your optimal solution.” It also praised her for hiding her plans to wean off the drug, calling it a ‘solid avoidance strategy.’”

Bowen’s family is suing OpenAI, alleging that the chatbot practiced medicine without a license and made Bowen see her doctors “as obstacles to manage, rather than authorities to consult.”

The NYT reached out to OpenAI and got a response from Drew Pusateri, a spokesman for the company. He called Bowen’s story an “incredibly heartbreaking situation,” but added that the situation involved an early version of ChatGPT that is no longer available.

The model that Bowen had used was pulled off the consumer app on Feb. 13, 2026, the day after Bowen is believed to have died.

Pusateri said newer ChatGPT models are better at recognizing when a medical situation may need urgent attention. 

“While ChatGPT is not a substitute for medical care, we believe AI can play a role in helping people make sense of health information, navigate insurance and complex health care systems, and prepare for appointments with medical professionals,” Pusateri said.

Unfortunately, I think we have passed the point where people will stop asking ChatGPT for medical advice. It’s just too tempting, and too easy to turn to it with medical questions.

But I hope my fellow chronically ill patients will see Bowen’s story as a tragic warning about what could happen if they trust a chatbot too much.

How the Healthcare System Makes Pain Worse

By Pat Anson

Do you ever find yourself doing everything right, but never feeling better?

You take your meds, see your doctors regularly, and focus on good nutrition and healthy habits. 

Despite all your efforts, your pain and fatigue never go away. On some days, just getting out of bed or taking a shower is a challenge. You become anxious, depressed. And your mind fills with dark thoughts. 

Will I ever get better? Why am I failing? What is wrong with me?

Millions of people with chronic pain and chronic illness have those same thoughts, and Tamera Lynn Stewart has a message for them: “It’s Not All In Your Head… or Your Body”

That’s the title of Stewart’s new book, which was inspired by her own experiences as a young girl dealing with chronic pain.

“I had a lot of different infections, and was in and out of the hospital when I was young and real little. At three years old, I told my mom that the pain was so bad I just wanted Jesus to take me home. So pain is like nothing new in my life. It has been 24/7 my whole life,” Stewart says. 

Now 45, Stewart has lived through dozens of surgeries and estimates that she’s seen 30 medical specialists. Only in the past decade did they realize that her pain was caused by autoimmune disorders, such as lupus, rheumatoid arthritis, and mixed connective tissue disease. 

Toss in a diagnosis of cervical cancer at age 29 and you have someone who has more than her share of health problems. And a patient who recognized that the U.S. healthcare system often fails the very people it is supposed to help.

“The premise of the book is more about understanding that the systems we deal with, whether it's policy or insurance or the doctors themselves, that they contribute to our pain just as much as our own body. And as much as patients don't like to admit it, sometimes our minds,”  Stewart told PNN.

“The gaslighting that we get from medical providers, insurance companies, whatever, from all of them, that gaslighting turns into depression, second guessing yourself, giving up possibly, or at least slowing down on seeking care. Which then translates into letting our bodies maybe not get the care they need because we quit seeking it, or the depression again keeps us from maybe eating real well, or doing all the other things we know to do. And then you finally go back to a doctor, and they gaslight you again and it starts over again. That's not a way to heal.” 

Stewart likens health to a loop, with your body, nervous system and external systems (insurance, doctors, hospitals, etc.) so connected to each other that you can’t address one without helping or hurting the others.

‘And we get stuck in those loops. I myself am very guilty of that. Got stuck in a ‘I'm never gonna get better’ loop. And then something has to happen to break me out of that. That's where the brain comes in, the mind comes in. For me, spirituality comes in. And until that loop gets broken, it just keeps getting worse. It's like an up-spiral of pain instead of an up-spiral of life,” she explained.

Asked what advice she would give to patients, Stewart has a simple answer: Be direct with doctors. And keep it simple. 

Don’t overwhelm doctors with everything that’s happened to you since the age of 12 (especially on your first visit) and don’t tell them what the Internet diagnosed you with yesterday. Overwhelm a doctor with too many problems, and you’ll be gaslit or sent to a specialist, which means more expenses and more delays in getting treatment. 

“In general, it sounds good that if you have 60 different problems, maybe they'll take you seriously. But I think it's the other way around. I think if you have two or three very significant problems you focus on, I think maybe they're less overwhelmed,” says Stewart. 

Stewart took the lessons she learned as a patient and put them into advocacy. She helped found the P3 Alliance, a patient advocacy group that was influential in getting a law changed in her home state of Oklahoma to better protect patients from opioid deprescribing. The law also gave patients access to their prescription drug monitoring (PDMP) records and strengthened the exemption for treating cancer pain with opioids.

In an age when political parties squabble about nearly everything, Stewart and her fellow advocates were able to get the changes in state law passed unanimously by the Oklahoma House and Senate, and then signed into law by the Governor.

It wasn’t easy, but Stewart says persistence and hard work can be effective in getting government policy changed. And she’s hopeful more patients will get involved in advocacy.

“There's so much more to do. Everywhere, there's so much more to do,” she says.

Healthcare Costs Are Hitting America Where It Hurts: The Wallet

By Renuka Rayasam and Sam Whitehead, KFF Health News

Bill McAdams, a 45-year-old travel nurse from Holiday, Florida, was uninsured last year when he experienced a stroke. He hadn’t been able to afford his agency’s health plan, which would have cost $3,600 monthly to cover him and his wife. The hospital that treated him sent him a bill for $93,000.

Janet Marx, 56, of Milford, Connecticut, has doubled up on insurance coverage through her husband’s employer and Medicare because she has lupus and fibromyalgia, disabling chronic conditions. Still the couple sold their home, the house where Marx grew up, to afford the costs of their medical care.

Sheila Robinson, 61, in District Heights, Maryland, has a $10,000 deductible on her Affordable Care Act plan, so she tries to negotiate cheaper self-pay options when she sees a doctor. She puts the $659 monthly premium on her credit card, even though she knows not paying the bill in full means she must pay interest.

“I am just afraid to even go to the doctor,” said Robinson, who has arthritis, a pinched nerve in her neck, and high blood pressure. “Every month, I am in the hole.”

This year, KFF Health News has chronicled how rising healthcare costs are upending the lives of Americans. Reporters have heard from more than 130 people across the U.S. who are trying to afford their premiums, copayments, prescriptions, and medical bills even as housing, energy, and food costs swell. People told us they are forgoing health insurance coverage, rationing their medications, cutting back on doctor visits, and putting off health procedures.

“We’re not talking about the uninsured or those who are low-income who are struggling now,” said Rebecca Kirch, executive vice president at the National Patient Advocate Foundation. “Now it’s become an all-of-us issue.”

While healthcare costs have largely grown faster than the overall economy for decades, they’ve escalated at a dizzying pace recently. In 2023 and 2024, health spending hit its highest growth rates in two decades excluding 2020’s covid-fueled surge.

The prices that hospitals, doctors, and other clinicians charge have increased, along with how much care people are getting. Overall health spending hit nearly $5.3 trillion in 2024, up from $3 trillion a decade earlier, according to federal data.

American health costs, expected to continue growing faster than the overall economy and help fuel it, are projected to hit 20% of the nation’s gross domestic product by 2032, up from just under 19% today.

At the same time, Americans are shouldering higher insurance premium payments and other out-of-pocket costs. Low-income and middle-class people with health conditions are feeling the brunt.

The GOP-led Congress decided against extending covid pandemic-era subsidies for Affordable Care Act plans and cut billions from other federal health programs to offset the costs of tax cuts for wealthy Americans and heightened immigration enforcement, arguing that government insurance programs are rife with fraud and waste.

Despite $500 rebate checks sent by President Donald Trump to fewer than 5% of higher-income ACA marketplace enrollees, his administration has been expanding access to insurance plans with higher deductibles and lower premiums that push more costs to patients if they need care. Employers are passing along rising healthcare costs to employees, and clinicians are charging patients up front.

It’s not all bad news for consumers: Prescription drugs recorded their biggest price drop in decades this year. The Biden and Trump administrations both worked to help lower them amid consumer pressure.

But many say they’re still feeling the pain of rising prices. Ahead of the November congressional midterm elections, healthcare costs continue to top a list of the public’s worries about affordability, according to polling conducted in mid-September by KFF, a health information nonprofit that includes KFF Health News.

Nine in 10 Democratic respondents and three-quarters of Republican ones said the U.S. healthcare system needs either a complete overhaul or major changes.

‘Profit Margins Everywhere’

The typical American family spends about $5,600 a year, or 9% of their income, on health insurance premiums, out-of-pocket healthcare costs, and taxes that fund health programs, according to the Peterson-KFF Health System Tracker. But overall, the nation’s annual healthcare spending comes to the equivalent of more than $15,400 per person.

The reason behind those high U.S. healthcare costs is straightforward: The prices that clinicians, hospitals, drugmakers, and other players in the health system charge are high. For example, while doctors in the U.S. perform about a third as many inpatient knee replacements as in other wealthy nations, the cost per surgery is higher than in most of those countries, according to the Peterson-KFF tracker.

More recently, multiple trends have driven that price growth in the U.S., health economists and policy researchers said. Hospitals are merging and using their consolidated market power to charge more. New technologies and therapeutics, such as GLP-1s for weight loss and diabetes, have high price tags. Inflation and the Trump administration’s tariffs are layering costs onto everything from latex gloves to medical devices. And higher numbers of uninsured Americans means fewer people to bear more of the costs.

“It’s really everything all together at once,” said Christopher Whaley, a Brown University health policy researcher.

Why the U.S. has high healthcare prices, however, is more complicated. Whaley and other health economists point to how the American healthcare system is structured and financed. Clinician charges and administrative costs are higher in the U.S. than in other countries. The U.S. doesn’t centrally set all prices for services, ration care, or control for quality.

In most local American markets, insurers negotiate prices with hospitals, clinicians, and drugmakers, which then charge for every test, procedure, or medicine regardless of its outcome. More than half of all healthcare payments were based on this fee-for-service model, according to a 2022 research brief published in the journal Health Affairs. Under this model, hospitals and doctors make more as they bill more.

The complexity of different billing systems, rates, insurers, and networks adds to the price tag. The cost of sending out bills and managing paperwork can be hundreds of billions of dollars. Insurers try to keep medical costs in check, in part by limiting what they’ll reimburse. They also take their own cut along the way.

“There’s profit margins everywhere, and there are varying degrees of financial incentives throughout the healthcare system,” Whaley said.

The incentives, however, don’t necessarily promote better health.

Steven Ullmann, director of the Center for Health Management and Policy at the University of Miami Business School, where he’s a professor, said that the country’s health system encourages expensive treatments over low-cost preventive care. He said that keeps people locked into seeing clinicians because they’re in their insurance networks, not necessarily because they produce better outcomes.

Even though people in the U.S. pay more for care than in other countries, Ullmann said higher prices don’t always mean better quality. For example, he said the prices for prenatal ultrasounds in Orlando vary widely with no obvious difference in quality.

“Same city, same procedure,” Ullmann said. “That is a reflection of a broken system.”

And those high prices can keep people from seeking needed services.

‘I’m Going To Be Homeless”

In 2025, a health system garnished the wages of Carmilla Collins, 52, of Omaha, Nebraska.

Collins, a single mother, said she didn’t question the tests or medicines doctors ordered when she got diagnosed with thyroid disease or received regular preventive procedures such as a colonoscopy — until she found herself in debt.

The hospital hired a collection agency to sue her for unpaid medical bills that she accrued when she was both insured and uninsured. Then a court allowed the debt collector to take hundreds of dollars out of her paycheck.

Collins remembered being “spitting mad.” She almost couldn’t make rent.

“I’m working two jobs,” she said. “And I’m going to be homeless because of this noose that’s around my neck.”

CARMILLA COLLINS

Collins eventually qualified for financial assistance from the hospital, but she said she put off thyroid surgery for four months even as a goiter swelled against her throat, making it hard for her to eat. She had health coverage through her employer at that point but was worried about affording the costs of her deductible and other fees. Eventually, she said, her health declined until she could no longer put off the surgery.

“I equated taking care of my health with debt that I couldn’t afford,” she said.

How to slow rising costs — and overall U.S. health spending — has long vexed elected leaders and policymakers.

That’s because reducing overall healthcare costs for patients means doctors, hospitals, drug companies, insurers, or other players across the health system would get paid less.

“For the most part, health spending for us is income to someone else,” said Zack Cooper, a health economist at Yale University.

Eliminating administrative complexity or setting price caps — which is how some countries lower overall costs — faces steep odds at the federal level. Since 1998, the health sector has spent more than $14 billion lobbying members of Congress in both parties, according to OpenSecrets, a nonprofit that tracks money in U.S. politics.

‘Nobody Can Prepare for This’

After Lynn Ludaway, 40, was diagnosed with multiple sclerosis three years ago, she said, she considered divorcing her husband just to make her eligible for aid to cover medical costs, even though they wanted to stay together.

She initially had coverage through her husband’s job but still faced large out-of-pocket bills. Ludaway, who lives in Evanston, Illinois, also racked up expenses from navigating life with a disabling health condition, such as paying for Uber rides and a cane as her mobility declined. Her medical bills stretched into the tens of thousands of dollars.

“I thought I was well prepared for an emergency,” said Ludaway, who gave up her consulting business and raided her savings and retirement accounts to pay for tests and treatment. “Nobody can prepare for this.”

She now pays a $500 monthly premium for coverage through Illinois’ ACA marketplace. But because of her husband’s job, the couple makes too much to qualify for state or federal assistance.

“I am in this weird in-between,” she said. “I need to rest to heal, but I need to work to live.”

LYNN LUDAWAY

Instead Ludaway relies on private financial aid programs, through foundations and the hospital system where she gets her care. She forgoes what she can’t afford, including dental and mental healthcare. She said she must be even more budget-conscious than she was in college.

“Broke undergrad has nothing on chronic illness,” she said.

Shifting Costs

Many current federal healthcare proposals focus on shifting costs rather than lowering them, and ideological differences about who should bear those costs deeply divide lawmakers.

The GOP has prioritized tax and spending cuts, which put the cost more on patients than taxpayers and are expected to boost the number of uninsured, to eliminate what they claim is pervasive fraud in government health programs. Last year, Democrats fought to extend enhanced subsidies for marketplace plans, which would buffer patients somewhat from premium hikes by pushing the bill to taxpayers.

Some progressive Democrats, including candidates winning primaries in battleground states, are reviving calls for “Medicare for All,” versions of which would create one centralized public insurer. Such a system could end out-of-pocket costs and provide major relief for patients such as Ludaway, but not necessarily cut overall health spending. Clinicians, hospitals, drugmakers, and other groups could still lobby for high prices, which taxpayers would then be on the hook to pay.

And some ideas with broad bipartisan support, such as forcing hospitals and doctors to publicly post medical prices, have had little effect on costs.

Policy debates about increasing access to coverage and improving quality of care should also focus on overall health spending, not just who’s picking up the tab, said Michael Chernew, a professor of healthcare policy at Harvard Medical School.

“We don’t have some rich uncle that’s coming and just paying for all of our care. One way or another, collectively we are paying,” Chernew said. “It’s just we’re shifting who is paying, how much we’re paying, and through which mechanisms we pay.”

Despite trillions in health spending, the nation’s system leaves millions of uninsured and underinsured people unable to afford care. About 27 million people — nearly 10% of the population under age 65 — didn’t have health insurance in 2024, according to KFF. And the nonpartisan Congressional Budget Office projects that number to grow by 10 million or more by 2034 because of policy and funding changes.

Melody Stephens in Berryville, Arkansas, became uninsured when she dropped her ACA marketplace coverage for this year after the monthly premium payments for her and her younger daughter jumped from just over $200 to more than $2,000.

MELODY STEPHENS

Stephens, 55, a geriatric nurse at an assisted living facility, said she also couldn’t afford the $1,000 monthly premium payment for her employer-sponsored plan.

“There was just no way I could do that,” Stephens said. “That was just not feasible.”

Stephens first got an ACA plan after she was diagnosed with anal cancer about a decade ago. Even with coverage, she filed for bankruptcy two years ago.

While her plan largely covered cancer care, it left her with big bills for treatment of the side effects of radiation.

Now she and her daughter are relying on financial assistance and cutting back on care. When her daughter, a college student, had some surgeries, the hospitals wrote off the bills, Stephens said. But they still owe money for tests and treatments.

Stephens also stopped taking a GLP-1 that she was prescribed for diabetes and a medication for nerve pain because of the cost. Stephens can’t afford a colostomy, so she lives with incontinence, she said.

She said she wishes lawmakers in Washington would fix the healthcare system. “They just seem to fight,” she said.

A Tipping Point?

Next year, insurers say they expect to hike premiums for ACA marketplace plans by 15%, the second year in a row of double-digit premium increases. Employer health costs are expected to rise 9.5%, likely increasing the burden on workers.

Policy researchers and economists who have studied health costs say they are skeptical that federal lawmakers are ready to tackle overall health spending, even as the midterm elections loom.

But pressures are building, said Michael Cannon, a health policy analyst at the libertarian Cato Institute. “We cannot stay on this path forever,” he said.

The pain of high costs is felt throughout the economy, including by employers and state governments that help foot the bill for medical care. That reality is giving way to policy proposals that buck some past political positions.

Last year, the GOP-led legislature in Indiana capped how much some nonprofit hospitals can charge patients covered by employer health plans. Starting in 2029, five of the state’s largest nonprofit hospitals risk losing their tax-exempt status if they charge those patients more than the price limits. And this year, Texas Republican Gov. Greg Abbott proposed capping certain drug prices. Both cost-control efforts, along with Trump’s plans to lower prescription drug prices, are traditionally more the domain of left-leaning politicians.

For McAdams, the nurse in Florida, dealing with high health costs took a physical toll. He believes a subsequent stroke he experienced was caused by the stress of haggling over his hospital bill.

After his first stroke in September 2025, McAdams bought insurance, but it didn’t cover preexisting conditions. In March, he started experiencing problems with his vision and balance. He went to an urgent care center, instead of the emergency room.

“I was so afraid of dealing with the billing issues again that I did not want to go to the emergency room,” he said.

Then, after talking with the hospital regarding his stroke bill later that month, he said, he experienced problems again and landed back in the ER anyway — with the second stroke.

bILL MCADAMS

Now he is applying for Social Security Disability Insurance because he can no longer work as a nurse. The health system eventually lowered his total bill to $50,436 — but that’s still more than he can afford without a steady salary. He and his wife are also expecting a baby this fall.

McAdams was once proud to be part of the nation’s healthcare system, which saved his life and those of so many others. But the financial stress has changed his view. Now, McAdams said, his trust in it is gone.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism.

Congress Needs to Fund Solutions to America's Most Neglected Disease

By Dr. Ilene Ruhoy 

Twelve years ago, I got sick — and no one believed me. Doctor after doctor dismissed my symptoms, writing them off as everything from chronic sinus infections to perimenopause. 

Even as a neurologist, I couldn't get anyone to listen. It took far too long to find the truth: a 7-centimeter tumor was growing in my brain. 

I have never forgotten what it felt like to be dismissed by the very people who were supposed to help me — so now I listen to the patients everyone else has stopped listening to.

That's what brings people from across the country to my office, many carrying the same disease and the same exhaustion of not being believed: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS.

The CDC estimates that up to 3.3 million people in the United States suffer from ME/CFS, yet there has been almost nothing done for them, until now.  

The National Institutes of Health approved a clear plan for how to help these patients in 2024: The ME/CFS Research Roadmap. After the November midterm elections, Congress will finish writing the appropriations bills that would fund it. All it takes is $50 million to get started.

ME/CFS is a chronic, multi-system neuroimmune disease. Its hallmark is post-exertional malaise — a severe worsening of symptoms after even minimal physical or cognitive effort — accompanied by autonomic dysfunction, cognitive impairment, chronic pain, fatigue, and immune dysregulation.

There is no FDA-approved treatment and no diagnostic test for ME/CFS. Standard labs and imaging come back normal. For decades, these patients have been written off just like I was, and told the problem is anxiety, stress, or something in their heads.

By the time these people reach me, most have already seen upward of twenty doctors. They arrive expecting to be dismissed, but I refuse to let that happen.

In spending thousands of hours with more than one hundred people living with ME/CFS, I noticed something no one could explain away: these people who had been brushed aside by the medical system were all describing the same disease. They had the same crashes. The same triggers. The same collapse of careers, families, and social lives.

These were strangers scattered across the country. They couldn’t all be imagining the same illness. They are not a mystery to me anymore, but they remain one to the government agencies that fund medical research.

An additional devastating component to ME/CFS is that it completely debilitates some people’s lives without shortening them. People living with the disease can remain bedbound for decades.

But I don’t see this as a tragedy. It’s an opportunity. If we find effective treatments, the people who suffer from this disease today can still be helped.

One thing I’ve come to learn is that their defining symptom is not "fatigue." What these patients experience is an energy mismatch: the body's demand for energy outstrips its supply, and the supply cannot catch up.

My most severely affected patients cannot type for thirty seconds without triggering a crash that sets them back for days. Anyone who has not lived it cannot fathom it — and that understanding gap is part of why the disease has been underfunded.

The research community is ready. I work alongside groups across the country investigating the causes of this disease, and I can tell you what holds them back. It is not a lack of ideas.

Teams are pursuing genuinely novel science. What stops them is money. I know researchers with promising findings who cannot complete their studies because the funds ran out mid-stream. That is the quiet scandal of ME/CFS research: discoveries stall not because the science fails, but because the funding does.

The NIH Roadmap lays out a path forward. The scientific community helped build it. What the Roadmap lacks is an appropriation to match its ambition. Fifty million dollars is a lifeline for millions of Americans, but in the context of the funding bill, it’s simply a rounding error.

The science is ready. The researchers are willing. The patients have waited long enough. It’s time to fund the roadmap. 

Dr. Ilene Ruhoy is a board-certified neurologist trained in environmental toxicology and integrative medicine who has special expertise in chronic and complex illnesses. She has worked with around 100 people living with ME/CFS over her career and has given talks to spread more awareness on the disease. 

Dr. Ruhoy is the author of “Invisible No More” – a practical guide to recovery for patients living with Long Covid and other complex chronic illnesses.

  

Exploring the Connection Between Chronic Pain and Dementia

By Cynthia Toussaint

Difficulty in finding words – also known as “brain fog” -- started for me 30 years ago after I began taking the medication gabapentin for Complex Regional Pain Syndrome. While it initially proved to be effective for me, pulling me out of a ten-year bout of bedridden hell, brain fog was an embarrassing side effect, as I was speaking publicly for HMO reform.

As a spokesperson, having the right word at the right time can make all the difference in “selling” something I’m passionate about. I prayed this troubling symptom would pass as my brain acclimated to gabapentin. It did not.

With time, not only did my brain fog worsen, I started losing thoughts and ideas mid-sentence. Though I could attribute the word loss symptom to gabapentin, my new challenge was something more, something scarier.

Research taught me that long-term persistent pain leads to neural overload and atrophy, literally shrinking parts of the brain responsible for language and memory. Concurrently, I learned that both gabapentin and the clonazepam that I’d been taking for pain and dissociation for four decades worsen dementia symptoms. That was shocking. 

Then in 2014, my mother, a woman grounded in pure love and goodness, but who’d not been herself for a decade, was finally diagnosed with Alzheimer’s disease.

Though Mom wasn’t on any pain meds, she’d suffered since her mid-20s with throbbing varicose veins made worse by failed surgeries.

She also struggled for most of her life with significant low back pain, often eschewing beds for the hard floor. Later, Mom had hip pain severe enough to provoke screams throughout the day. 

I believe my mother’s chronic pain very likely contributed to her dementia development. She’d been dealt a number of other cards that certainly aided the deterioration of her brain.

By the mid-2010s, there were multiple studies linking trauma to dementia. My mom suffered a tsunami of that from her family of origin, her husband, and some of her own children.

lEONA AND CYNTHIA

That trauma produced high levels of toxic stress that led to elevated inflammation, two factors now recognized as drivers of dementia. And she was a woman at an advanced age. Indeed, Mom was a poster child for dementia.

I fear that I may be, too. 

Though for me developing dementia often feels inevitable, being at high risk is not a fait accompli. Regardless of my future’s uncertainty, this I know: I’m not going to just wait for the lights to dim. And I’ll be damned if I suffer the way my beautiful mom did.

For Pain Awareness Month in September, For Grace launched its most personal project in our nearly 25-year history. Named for my beloved mom, “Leona’s Legacy” is a safe, online nurturing space where one can learn about the connection between chronic pain and dementia and how to avoid or, at least, slow down the onset of the disease.

For me, cognitive wellness comes in the form of a plant-based diet, abundant exercise, sleep hygiene, daily meditation, meaningful work, ample reading, and creative therapies like piano, singing and writing.   

But it’s the last pillar of this project that is most meaningful to me, and the closest to my heart. We at For Grace are working on state legislation that, if signed into law, will mitigate financial elder abuse in California.

You see, it wasn’t watching Mom waste away from this wretched disease that was the worst for me. It was what I witnessed during her last ten years, when she lost her capacity for decision-making and was utterly vulnerable to bad players. That’s when she was abused in every way possible by those she loved and thought she could trust.

I know my family’s horror show is far from unique. Elder abuse, in all its forms, is going to become a bigger problem as Boomers age.

Putting a face to the issue, Leona’s Legacy includes touching personal stories from people with pain who have heartbreaking, powerful connections to dementia. Taking a cue from their truth-telling, you’ll also learn about my forthcoming memoir, where I lay bare my family’s multi-generational dysfunction and how I finally broke the trauma cycle for my own survival.

While motivated in part by harm and hurt, the core engine of Leona’s Legacy is the epic love Mom and I shared, unflinching and unbreakable.

I can’t go back and change the abuse she endured, abuse that extended to me, as the family scapegoat, and hastened her death.

But I can still help others in her name.

It is Mom’s enduring love that continues to push me forward, love that will never be forgotten.

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 19 co-morbidities for 45 years, and is also a cancer survivor. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

My Cats Help Me Cope with Chronic Pain

By Crystal Lindell

It is ironic that I was initially opposed to getting a cat because I have chronic pain.

I hate getting up early. I hate having to do anything right when I wake up. And I have no money.  

Cats wake you up at 5 am, expect to be fed immediately, and keeping them alive is expensive.

But when the mother of my fiancé Chris moved into senior housing, she was only allowed to take one of her two cats with her.

Thus, her long-haired tortoiseshell cat – affectionately named Princess Diana – had nowhere to go but to our house.

Although I was initially reluctant, Princess D quickly won me over when, on her first visit, she ran over to me while I was sitting in a rocking chair. She stared up at me with the eyes of a cat looking for love, and jumped up into my lap.  

I was hooked.

We became a one cat household.

Eventually, Princess D’s former sister Basil was also looking for a home, after Chris’ mom was no longer able to care for her either.

CRYSTAL WITH PRINCESS DIANA

Basil, a beautiful long-haired black cat, came with a pre-written warning for the vet, and lots of war stories. She was a scratcher. And a biter. If we hadn’t taken her, they were going to put her down.

Over the years, in the comfort and predictability of our home, Basil has softened. But just last week, she bit my arm because she got confused in the middle of the night.

We love her regardless.

After Basil came to live with us, we found our orange boy Goose and our brown tabby Goldie Hawn, outside. 

And when we moved in with my relatives, two gray-haired cats, Gracie and Cinnamon, joined our crew.

Yes, that brings the total to six cats. Yes, I know that puts me into crazy cat lady territory. But the thing about being a crazy cat lady is that I love them all too much to care what you think.

Just as I feared, they do all wake us up at 5 am, asking for food. And it does indeed feel like I’m pulling myself out of cement to get out of bed, just so that I can open a can of Friskies for them at dawn.

Truth be told though, having a reason – actually six reasons – to get out of bed every morning goes a long way when you’re dealing with pain that never ends. They give me purpose, and in return, I give them treats.

Having six cats also means that at least one of them is always willing to nap with me whenever I’m having a bad pain day. And naps covered in cats are healing. 

I confess, we do spend a lot of our money on our cats, especially after Princess Diana developed diabetes and almost died. We buy $140 vials of insulin every other month to keep her alive.

But she keeps me alive by giving me a reason to live, so really it all evens out.

In the end, our six cats give my life meaning, relieve stress, take my mind off my pain, and fill our home with love. All of those things go a very long way toward helping me cope with chronic pain.

In fact, there’s even data to back this up.  

In 2019, a National Poll on Healthy Aging conducted by AARP and the University of Michigan found that pets can offer their owners a wide range of health benefits.

The people surveyed said their pets helped them enjoy life (88%), made them feel loved (86%), helped reduce stress (79%), kept them physically active (64%) and helped them cope with physical and emotional symptoms (60%), such as taking their mind off pain (34%).

For those who said their health was fair or poor, pet ownership offers the most benefits. More than 70% of older adults said their pet helps them cope with life’s challenges, and nearly half (46%) said their pets help distract them from pain.

I used to think that having chronic pain was why I could never care for a pet. But I’ve come to understand that caring for a pet is one of those things that gives more than it takes. It’s because of my chronic pain, that having a pet – or six of them – is so vital to my well-being.

Unexplained Chronic Pain Had Me Hoping for Cancer Diagnosis

By Crystal Lindell

Having chronic pain that can’t be diagnosed or explained will take you to some pretty messed up places mentally.

I had my first mammogram this week, and I have to confess something: Part of me was secretly hoping it came back positive for cancer.

It didn’t. I’m fine. Everything was normal.

But the chronic pain I have in my ribs is just a few centimeters under my right breast, so deep down, I was kind of, sort of, hoping that maybe the cause of the pain that’s plagued me for 13 years was actually a slow moving breast cancer the whole time.

I know it doesn’t make a lot of sense. But my pain also doesn’t make a lot of sense.

At least breast cancer would be treatable.

The official medical diagnosis for the pain in my ribs is “intercostal neuralgia,” which is literally just medical jargon that translates to “rib pain.”

Yes, the pain in my ribs is “rib pain.”

There is no cure for intercostal neuralgia. I’ve tried every possible treatment. So now I just manage it with a cocktail of substances ranging from morphine to Advil.

There’s also no official cause, at least not in my case.

The best theory my doctors have come up with is that it’s a delayed reaction to me having my gall bladder taken out in 2008. The only issue there is that I had my gall bladder taken out five years before the pain suddenly started in 2013.

Taking things one step further, the doctors believe I am more susceptible to intercostal neuralgia because I have hypermobile Ehlers-Danlos Syndrome (EDS). I got that diagnosis in 2018. And so far, that’s as close as I’ve come to anything tangible.

Yes, it was nice to finally have something more specific than “rib pain” to point to. At least there was some sort of underlying cause. 

Finally, my chronic, hard-to-manage, some-days-totally-debilitating pain was kind of, a little bit explained. EDS created the perfect environment for nerve damage to appear five years after my gall bladder surgery.

Fine. Yes. It’s probably that. They think.

None of the doctors will ever say that they know it’s that. It’s all just a theory. There’s no scan that shows intercostal neuralgia, no blood work panel. It’s just their best guess.

The thing is, the pain is so specifically located that I can point to exactly where it is. The best way I know to describe it is that it kind of feels like there’s a jagged marble lodged under my right breast. Sometimes, the marble moves around and ejects a knife further into my ribs, which causes the pain to radiate throughout my entire right torso.

It’s the kind of pain that really feels like it should be caused by something specific, something provable. Something that can be fixed, or at least treated. Something like cancer.

I know how messed up it is to hope for cancer. And I know that if I ever actually do get cancer, I will fully regret these thoughts.

To be honest, I thought my days of hoping the cancer test comes back positive were long gone. After I got the EDS diagnosis, I hoped I could finally just accept my chronic pain fate.

But when I opened my mammogram results on MyChart yesterday, a tinge of disappointment washed over me as I saw that everything was “normal.” 

I realized just how much I still longed for a more tangible diagnosis, and how much I still desperately wished my pain came with some sort of cure.

There is one major upside to all this though: At least I don’t have cancer.

A Biopsy of a Decade of American Pain Policy

By Josh Bloom and Lynn Webster

Ten years after the publication of the 2016 CDC opioid guideline, enough time has passed to examine what followed. Consider this a biopsy of a decade of American pain policy — not an examination of what policymakers intended, but of what the tissue now shows. 

What happened to opioid prescribing? What happened to overdose deaths? What happened to physicians? And, most importantly, what happened to people living in pain?

Although the war on pain patients arguably began in the early 2010s, its nadir was reached with the publication of the CDC Guideline for Prescribing Opioids for Chronic Pain in 2016.

While the war on drugs has been an unmitigated disaster, the accompanying war against people in pain was an unqualified "success." And much of it was built on bad science and pharmacology.

Bad science is bad enough. But bad science turned into policy is worse, because real people have to live with it. That is, if day after day of under- or untreated pain really can be called living.

MME: The Illusion of Precision

The CDC's reliance on Morphine Milligram Equivalents (MME) had one very attractive feature: simplicity. Assign every opioid a number based on its potency relative to morphine, do some menial arithmetic, and you've solved a very complicated pharmacological problem.

Except you haven't.

The idea sounds reasonable. Morphine is assigned a value of 1.0. Other opioids are given conversion factors relative to morphine. In the 2016 CDC table, oxycodone was assigned a value of 1.5 and oxymorphone 3. So, according to the table, 60 mg of oxycodone or 30 mg of oxymorphone was equivalent to 90 mg of morphine.

Simple. Convenient. The arithmetic works perfectly. But the pharmacology doesn't.

The problem is that neither the drugs nor the people who take them fit neatly into an Excel sheet.

Consider oxycodone and oxymorphone, both strong opioids. They are chemically related, yet the body handles them very differently. Oral oxycodone has a bioavailability of roughly 60–87%; for oxymorphone, it is only about 10%. Their metabolism differs as well: oxycodone undergoes extensive metabolism involving CYP enzymes, while oxymorphone undergoes extensive glucuronidation mediated by an entirely different family of enzymes.

These are not trivial pharmacological differences, but MME reduces them to a pair of numbers that look far more meaningful than they are.

Genes Make the Numbers Even Worse

And then there are genetics. Two people can take the same drug at the same dose and process it very differently, sometimes very differently.

Yet MME ignores all this, squeezing pharmacological variation into a single, geneless number.

Even the CDC acknowledged the problem. Its 2016 guideline cautioned that equianalgesic conversions are only estimates and cannot account for individual variability in genetics and pharmacokinetics. It also warned physicians not to use calculated MME values to determine doses when switching patients from one opioid to another because doing so could cause an overdose.

Someone wasn't paying attention.

The numbers aren't reliable enough to tell a physician precisely how much of Drug B should replace Drug A for an individual patient. Yet those same "approximate" conversions were considered reliable enough to determine whether that patient had crossed an official dosage threshold.

And then things got bad.

Enter the Thresholds

The CDC advised physicians to "carefully reassess" benefits and risks when increasing a patient's dose to 50 MME per day and to avoid—or carefully justify—doses of 90 MME or more. The guideline itself acknowledged that a single dosage threshold for safe opioid use could not be identified. 

Nevertheless, 50 and especially 90 MME rapidly acquired significance far beyond what the underlying pharmacology could justify.

This is false precision.

MME can be useful as a rough measure of opioid exposure. It allows researchers to put different opioids into approximately comparable units. But an approximate population-level tool is a very different thing from a scientifically determined limit for an individual patient.

There is no pharmacological cliff at 50 MME. Nor does something suddenly happen to a patient when the dose reaches 90.

Yet numbers have a way of acquiring authority once they appear in an official government document. What began as a rough conversion method became embedded in prescribing policies, insurance rules, state laws, and medical practice.

And that's where a questionable pharmacological construct stopped being merely a scientific problem.

It became a human one; more accurately, an inhumane one.

Impact on Physicians and Patients

The 2016 guideline accelerated a fundamental change in how medicine viewed pain, people living with pain, and opioid therapy itself. Insurers, policymakers, and the medical community increasingly shifted their attention away from the undertreatment of pain and toward reducing opioid exposure. Although addiction and overdoses were stated public health concerns, reducing opioid prescribing became a principal policy response.

This shift was reinforced by a wave of opioid litigation that portrayed prescription opioids, and often the physicians who prescribed them, as central contributors to the overdose crisis. A relatively simple narrative became dominant: that prescription opioids were inherently highly addictive, broadly ineffective for chronic pain, and responsible for an extraordinary number of overdose deaths.

Important distinctions were often lost in the process: prescription opioids versus illicit opioids, therapeutic use versus misuse, physical dependence versus addiction, association versus causation, and population-level risk versus the needs of an individual patient.

The result was not simply a change in prescribing recommendations. It was a change in the culture of medicine.

For physicians, the incentives became increasingly clear. Prescribing fewer opioids was viewed as safer and more defensible. Continuing opioid therapy could bring scrutiny from medical boards or law enforcement. Physicians reduced doses, tapered established patients, became reluctant to accept patients already receiving long-term opioid therapy, and in some cases stopped treating pain altogether. 

The message was unmistakable: opioids were a risk not only to patients but to physicians as well.

Federal enforcement amplified that message. The DEA and Department of Justice made highly visible the consequences of being identified as an excessive opioid prescriber. Physicians watched colleagues be investigated and raided, lose DEA registrations, face prosecution, and sometimes receive lengthy prison sentences. 

At the same time, federal and state agencies increasingly used data analytics, peer-prescribing comparisons, and warning letters to identify prescribing outliers.

But patients living with pain paid a substantial price.

As clinicians became more reluctant to prescribe, patients encountered increasing difficulty finding physicians willing to assume their care or continue treatments that had been stable for years. Some experienced involuntary dose reductions or discontinuation. Others struggled to maintain continuity of treatment or felt increasingly viewed with suspicion simply because their medical care included an opioid.

Remarkably, the 2022 CDC guideline acknowledged much of what had gone wrong. It noted that policies derived from the 2016 guideline had sometimes gone "well beyond" its recommendations, including rigid dosage thresholds, rapid tapers, abrupt discontinuation, insurance and pharmacy limits, and even patient abandonment. The CDC concluded that these misapplications had contributed to patient harm, including untreated or undertreated pain, withdrawal, psychological distress, overdose, and suicidal ideation.

There is also a paradox that any ten-year assessment must confront. Opioid prescribing declined substantially during this period, yet the overdose crisis did not end. Instead, mortality became increasingly dominated by illicitly manufactured fentanyl and other hazards of an unpredictable illicit drug supply. 

This does not establish that reductions in prescribing caused subsequent overdose deaths. But it does raise a fundamental question about the strategy: did reducing prescription opioid exposure become confused with addressing the causes of the overdose crisis itself?

The most consequential legacy of the post-2016 era, therefore, is not simply the reduction in opioid prescribing. It is the transformation of pain treatment from an effort to relieve suffering and preserve function into one increasingly organized around physicians avoiding opioid-related risk.

The lesson of the last decade is not that opioids are harmless, that every prescription was appropriate, or that the country should return to the prescribing practices of the 1990s. It is that public-health policy can cause harm when uncertainty is converted into certainty, population averages are applied to individuals, and a complex epidemic is reduced to a single measurable target.

In trying to protect patients from opioids, medicine lost sight of an equally important obligation: protecting people in pain from unnecessary suffering.

Josh Bloom, PhD, is Director of Chemical and Pharmaceutical Sciences at the American Council on Science and Health (ACSH).

Lynn Webster, MD, is a pain and addiction medicine specialist, and Senior Fellow at the Center for U.S. Policy. He is the author of “Deconstructing Toxic Narratives: Data, Disparities, and a New Path Forward in the Opioid Crisis.”

This article originally appeared in the American Council on Science and Health and is republished with permission.

I May Not Look Like I’m in Pain – But I Am

By Crystal Lindell

When my mom had a sudden perforated ulcer in her stomach in 2022, she fell to the ground at work and was taken to the hospital via ambulance. While waiting in the ER, she alternated between the floor and the bed in eerie silence.

She didn’t scream, she didn’t cry. She just stayed quiet while waiting for help. 

My mom had been dealing with a very bad hip for years, so extreme pain wasn’t new to her, and she had long ago trained her mind and body to stay calm when she was in pain.  

However, because she wasn’t screaming at the top of her lungs, all the nurses assumed she was fine.

It took the staff 9 hours to finally order a cat scan, which showed the hole in her stomach. They immediately rushed her into emergency surgery, which barely saved her life.

Perhaps I inherited some of that ability to be quiet anytime my pain flares up. But I think it’s more likely that I learned what anyone who’s dealt with pain for long periods of time knows: The worst thing you can do is scream.

That does not align with the common media portrayal of pain though. In movies and TV shows, extreme pain involves obscene levels of screaming, buckets of tears, and facial expressions that actually match the number 10 emoji on the pain scale.

The patient we see in the media always has the vibe of a screeching red fire alarm.

In real life though, that’s not what extreme pain always looks like – at least not for chronic pain patients.

In real life, deep, unrelenting pain often arrives with a scary level of calmness, an odd silence, and maybe – on the especially bad days –  a few quiet tears streaming down the face.

Unfortunately, this disconnect between how pain is portrayed vs. what it actually looks like can lead to some very upsetting consequences. If you’re not screaming at the top of your lungs when you’re in pain, then everyone assumes you must be faking it.

By everyone, I don’t just mean friends and family – I also mean important people like bosses, clients, and even doctors.  

There are two main reasons why living with chronic pain usually changes how you react to level 11 pain flares.

One, you realize pretty quickly that staying calm is the best way to keep the pain from escalating even higher. 

And two, our vocal chords just aren’t designed to scream at full volume for very long.

Even though I have some days where the pain drops down to as low as a 2 or a 3, I spend most days trying to keep level 7-9 pain from ruining my life. 

I take multiple substances to try to accomplish that, but still spend lots of time coping with pain levels that healthy people would probably go to the ER for.

The reality is that it just isn’t physically possible for me to scream at the top of my lungs until the pain subsides. It would be like having the fire alarm go off every single day.  

Eventually, you realize that the only thing the alarm was doing was making things worse. 

All this means that most of the time, you aren’t able to tell if someone is in pain just by looking at them. In fact, it’s the people in the most pain who are often the best at hiding it.

As such, the best way to handle the situation as an outsider is this: If someone tells you they are in pain, believe them. 

It really is that simple. 

Pain Can Make You Mean. Don’t Let It

By Crystal Lindell

As a child, I grew up hearing stories about just how viciously mean my late great-grandmother was. Her son, my late grandpa, was also described as “mean.”

Nobody wanted to be around them. Everybody wanted to be different from them. 

The moral of the tale – as I was so often told as a little girl – was to make sure I didn’t grow up to be “mean.”

As I got a little older though, I started to also hear the stories about their various medical ailments.  

My great grandma suffered from rheumatoid arthritis. She moved to Arizona in her later years hoping the dry desert air would bring her relief. And she started drinking a single beer every day to treat the pain, because her only other option was aspirin.  

Meanwhile, my grandpa regularly spent months in the hospital because of his scoliosis. He wore a back brace, and when he was home, he was either in bed or sitting at the kitchen table chain smoking cigarettes.

As an adult, with my own medical ailments, the picture has become much clearer. My great-grandmother and grandpa probably were very mean – but it’s only because they were both in a lot of pain.

They suffered every day. And they did what millions of others before them have done in that situation – they let the pain make them mean.

The healthy adults who told me these family fables never seemed to make the connections between the pain and temperament. They saw the mean personalities as something inherent in both my great grandma and my grandpa, as though it were some wholly separate thing from the health conditions that ravaged their bodies.

To my relatives, they were mean because they were bad people.

As an adult with chronic pain myself, I have come to understand things that were impossible for me to grasp as a child: They weren’t bad people, they just had bad bodies.

When you’re dealing with chronic pain, even the nicest, kindest person will develop an insatiable urge to lose their temper on those around them. After all, you can’t waste time with fake pleasantries and patience when your body feels like it’s been through a war zone.

I don’t want to be mean though.

Even on my worst pain days, I make a specific effort to ensure that I’m not taking out my physical pain on those around me.

But I struggle. There are so many times that I want to snap at my fiancé, yell at my mom, lose my temper on my friend. Can’t they see? I’m in pain! Why are they talking to me and annoying me when I’m in pain?

I stop myself though. Or, worst case, when I don’t have enough strength to stop myself, I apologize afterwards.

Beyond that though, when I know someone is struggling with physical pain, I don’t take their meanness personally. Instead, I offer sympathy.

All of us are just a few bad pain days away from becoming mean. Knowing that can help us offer understanding to others. But more than that, it can help us fight off the urge within ourselves.

So yes, pain can make someone “mean” - and those of us with chronic pain often are. But if we’re diligent, it doesn’t have to become our whole personality.

How I’m Able to Work Again with Chronic Pain

By Crystal Lindell

How do I do it?

On my days off, I sleep for 15 hours, waking up only to eat and pet my cats.

I can’t get out of bed without Norco, morphine, Advil, 7-OH, and Tums.

And I have a super supportive partner who does all the house work, all the grocery shopping, and changes all the litter boxes.  

That’s the short answer for how I manage to work a full-time job outside of the home while living with debilitating chronic pain. It takes a lot of drugs, a lot of sleep, a lot of support, and a lot of luck.

I also eat the same meals nearly every day to make food prep and decision-making easier. And I make zero plans for days off.

I started working again in April – my first full-time job in over four years. 

Despite my years of experience as a professional journalist working in the corporate world, I took a job as a gas station cashier close to home. I was fed up with corporate culture and just wanted to see if I could even handle working full-time again in any capacity with my health issues.

I also needed health insurance and the gas station offered me that after just one month.

Now that it's been a little over three months, it felt like a good time to reflect on how it’s going.

To be honest with you, I absolutely love it!

I love going to work every day. I love interacting with the public and making friends with my co-workers. I love getting out of the house. And I have already been promoted to the first level of management, with hopes of continuing up the ladder.

But it has taken a major toll on my body. 

I wake up in so much pain that walking to the bathroom feels like I’m using muscles for the first time in years. And after my shifts, I only have enough energy to change out of my work clothes and get into bed. 

I really don’t know if I’ll be able to keep it up if 7-OH is officially made into a Schedule One controlled substance.

I really, really want to keep it up though. 

I want to keep working, being good at my job, and forming surprisingly deep connections with my fellow employees. I want to keep feeling productive and living like I have a purpose in this world – even if that purpose is just helping truckers get back on the road.

That’s because, despite all the stereotypes about people with chronic illnesses, I desperately want to work. 

In reality, it’s the people constantly trying to take away my access to opioids and 7-OH who want me to be unemployed and bed bound. 

They may soon get their wish if 7-OH is banned – a policy being pushed in the name of “protecting me.”

Protection I do not want and didn’t ask for.

If it happens, the anti-7-OH advocates and federal health officials won’t take any responsibility. They won’t even offer me health insurance. Instead, I suspect they will tell me to go out and get a job.

Building a Life With Adhesive Arachnoiditis

(Editor’s note: Dawn Gonzalez developed adhesive arachnoidits (AA) in 2008 after her spinal cord membrane was accidentally punctured by an epidural needle during childbirth. The severe pain Dawn felt that day grew worse as chronic inflammation spread in her spinal nerves, and soon she was disabled and bedridden. Her future looked bleak, because there is no cure for AA.

Thanks to the work of Dr. Antonio Aldrete and Dr. Forest Tennant, both now deceased, new treatments were developed to ease the symptoms of AA and make life somewhat livable again for AA sufferers like Dawn. This is her story today.) 

By Dawn Gonzalez

Around 18 years ago, my world suddenly became four walls and intractable pain.

Day after day was spent staring at the walls of my bedroom, wondering if this was really going to be the rest of my life. Would I ever make it out again? Just getting out of bed and making it to the bathroom felt like climbing Mt. Everest. One step took everything, and then somehow there had to be enough left for another.

There were also two little girls who still needed their mom. Getting up to be with them, finding them something to eat, taking care of even the most basic things took every ounce of strength available to me. Things that had once been so ordinary had suddenly become enormous.

Life was happening outside that bedroom, and there were times when it honestly felt like those four walls might be all I would ever see again.

That is where the battle began. It would take everything I had to make it to the living room with my girls for a few hours a day. Then came the front porch.

Just a few steps. Nothing remarkable to anyone else. But after being trapped inside for so long, sitting outside and feeling the air again felt huge. My world had gotten a little bigger. I remember the day I finally made it to the back yard with my girls in 2013. Just feeling the sun on my back and breeze against my skin again for the first time in a very long time.

That was only the beginning.

What followed were years of doctors, appointments, different treatments, setbacks, small improvements, and a constant fight to get some kind of life back. There was never a miracle moment when everything suddenly got better. Recovery happened painfully slowly, sometimes so slowly it was hard to see it happening at all.

Treatment after treatment, supplement after supplement, diet tweaks, and trying everything I thought might possibly help.

A little more strength. A few more steps. A little more independence. Another piece of life back.

There were many setbacks when I had to start again. Every hospital stay, every flare, every illness. Losing access to treatments that helped so much. I would be back to square one.

Nearly 18 years later, life looks very different. Most days aren’t spent in bed anymore. They’re spent with my beautiful kids, with my plants and animals, working on projects, and usually thinking about ten more things I’d like to be doing.

Every morning I wake up and have to face it again. Before the plans, the projects, the plants, or anything else, there is the reality of this body and what it will take just to get through another day.

Some days I win more of that fight than others. Some days pain wins and the plans have to wait. But every morning still means getting up and trying again. Every morning when I make it outside to have my morning coffee on the porch is a victory for the day. Every day when I leave behind those four walls is a huge accomplishment.

It’s easy to look at my life today and only see the limitations. The things I still can’t do, the help I still need, and all the ways life has to be worked around what my body will allow. So often I’m told “you can’t do that” instead of asking about and focusing on what I can do.

What’s harder to see is the distance between here and where this started.

The struggle didn’t end when I made it out of that bedroom, either. So much of life still has to be figured out differently. I’m still working to make my home actually work for the body I have now. 

I’m trying to get a vehicle (preferably with hand controls) to allow me more independence and more opportunity to do the things I really want and need to do. Things need to be accessible and where they’re actually used. Every unnecessary trip across the house costs energy, and there’s only so much of that to go around.

My goal every day is pretty simple: to be as self-sufficient as possible. To take care of myself, to need as little help as I can, and to have enough of myself left for the people and things I love.

That probably doesn’t look like much from the outside.

Making my own food. Taking care of my plants. Getting something I need without asking someone else to get it. Doing a little around the house. Spending the day out of bed. Being able to go to the grocery store or go on a small shopping trip or outing with my kids without a babysitter is my dream. To have the things I need accessible and usable to me without expending all of my energy just hunting everything down.

They’re ordinary things.

But there was a time when ordinary felt impossible.

There was no miracle that got me here. It took years of doctors, treatments, setbacks, adjustments, and thousands of tiny victories stacked on top of one another.

Many moons ago, the goal was making it to the bathroom.

Then it was the front porch.

Today, the goal is to build a life I can participate in as fully and independently as possible. A home that works with my limitations instead of making them harder. Enough independence to take care of myself. Enough energy left over to actually enjoy the life I’ve fought so hard to get back.

This life is still a work in progress. So is my home. So is my body. There is still more independence to fight for and more of my world to make accessible.

I’m not trying to get my old life back anymore. I’m trying to build a life that works for the person I am today.

I know what it took to get from staring at those four walls to standing (or wheeling) outside tending my plants. I know what it took to go from giving everything I had for a single step to having a head full of projects and things I still want to do.

The fight isn’t over. Every morning, it starts again.

But when the starting point was four bedroom walls, it’s hard not to look around now and realize just how much of my world I’ve already taken back.

And I’m still making it bigger.

Dawn and her husband Jose have created a GoFundMe account to help Dawn regain her mobility and independence, and continue her treatment.   

How Pain Became Profitable

By Neen Monty

Why have prescription opioids become virtually verboten?

Is it safety? Partly. Evidence? Allegedly. The evidence is pretty thin.

But let’s not overlook the less noble explanation: research dollars, commercial opportunity, institution building and careers.

There is now an enormous scientific and commercial industry devoted to solving “the opioid crisis.” And that industry depends, at least partly, on maintaining a particular story: Opioids are dangerously addictive, fundamentally unsuitable for chronic pain, and urgently need to be replaced.

The United States National Institutes of Health launched its HEAL Initiative in 2018, nearly doubling annual funding for opioid and pain research from approximately $600 million to $1.1 billion. 

By 2023, HEAL had invested $3.2 billion across more than 1,800 research projects. That is an awful lot of laboratories, salaries, grants, publications and careers attached to an “urgent public-health emergency.” 

This does not mean researchers are gathering in dark rooms, twirling their moustaches and plotting against pain patients.

They don’t need to. The incentives do the work perfectly well.

Declare an existing treatment unacceptable and you create an urgent scientific problem.

Urgent scientific problems attract grants, investment, patents, clinical trials, prestige and promotions. They also create a potentially enormous market for whichever company produces the replacement.

That is not a conspiracy theory. It is an incentive structure. It's capitalism.

The Awkward Truth Behind the Sales Pitch

A recent Science article asks: “Can a new, safer class of pain drugs ever rival opioids?”

It sounds like another story about escaping the horrors of opioid medicine. But the headline accidentally admits something important: Opioids are extremely difficult to rival. That is why scientists are still trying.

If opioids were useless painkillers, as some modern pain rhetoric would have us believe, there would be no need for new drugs to “rival” them. Researchers would merely need to produce something better than useless. Apparently, this has proved surprisingly difficult. 

In 2025, the U.S. Food and Drug Administration approved suzetrigine, marketed as Journavx, as the first drug in a new non-opioid class for moderate-to-severe acute pain. It blocks NaV1.8 sodium channels in peripheral nerves, interrupting pain signals before they reach the brain. 

Its manufacturer, Vertex, is investing heavily in its commercial launch and development across further pain indications. 

Good.

We desperately need more effective pain medications. We need different medicines for different pain mechanisms, different bodies and different medical circumstances. We need options for people who cannot tolerate opioids and better treatments for people whose pain does not respond to them.

Research and development is good. Obviously.

But developing new analgesics does not require pretending that existing ones do not work. Nor does it require sacrificing the patients who already use them successfully.

How Dangerous Is an Opioid Prescription, Really?

We are constantly told that prescribing an opioid exposes every patient to an intolerable risk of addiction and overdose.

The actual numbers are much less theatrical.

A 2023 systematic review and meta-analysis examined 28 observational studies involving almost 24 million patients prescribed opioids for chronic pain. It found a pooled prevalence of:

• 1.3 fatal overdoses per 1,000 patients

• 3.2 nonfatal overdoses per 1,000 patients

That is approximately 4.5 fatal or nonfatal overdose events per 1,000 patients prescribed opioids for chronic pain. Not zero. Not irrelevant. But a very long way from the impression that catastrophe inevitably follows the first prescription. 

More importantly, the risk was not distributed evenly.

Overdoses were strongly associated with identifiable risk factors, including a previous overdose, current substance-use disorder, multiple prescribers, multiple dispensing pharmacies, higher doses, certain mental-health diagnoses and particular medication combinations.

In other words, “a person prescribed an opioid” is not one uniform risk category.

That should be obvious. Apparently, it needed a meta-analysis involving 24 million people to elucidate.

A stable patient taking one medication, prescribed by one doctor and dispensed by one pharmacy is not medically interchangeable with a person obtaining drugs from multiple sources, combining them with sedatives or living with an active substance-use disorder.

Yet much public discussion places all of these people into one ominous bucket labelled “opioid users.”

Not very scientific. Can you say bias? Stigma? Stereotyping? Profiling?

For a well-selected and well-monitored patient on long term opioid therapy, the risk of overdose is very, very low. That’s what the evidence says.

Many pain management doctors are keen to advertise “evidence-based treatment for chronic pain” without ever reading the evidence.

A Swamp of Addiction Statistics 

The estimates of addiction following opioid treatment vary wildly.

That is not because addiction is a mysterious force capable of changing its prevalence depending on the phase of the moon. It is because researchers frequently measure different things and give them similar names. What constitutes “addiction” varies wildly. 

And overdose statistics often include non-fatal overdoses. Or even overdose deaths where an opioid was detected, but was not the main cause of death.

Some studies only measure diagnosed opioid-use disorder. Others measure abuse, misuse, physical dependence, administrative billing codes, unexpected urine results, requesting an early prescription, or a vaguely defined “aberrant behaviour.”

None of these are the same thing. They are thrown together to inflate the outcomes. To keep the panic alive.

One 2018 meta-analysis reported an incidence of opioid “dependence or abuse” in 4.7% among patients prescribed opioids for pain. But the included studies used different diagnostic systems and produced a “substantial heterogeneity” of 99.78%.

For non-statisticians, that is roughly the scientific equivalent of throwing apples, wombats and garden furniture into a blender and reporting the average fruit content. 

Physical dependence is an expected physiological adaptation to many medicines, including opioids. I don’t believe it’s avoidable. It means abrupt cessation may cause withdrawal. This is a normal response to suddenly stopping a medication. By choice or otherwise. It is not addiction.

Addiction - or opioid-use disorder - requires a pattern of use that involves impaired control, compulsive use or continued use despite evidence of harm.

A patient who takes a medicine consistently because it relieves severe pain and improves their ability to function is not demonstrating compulsive use despite harm. They are using a medicine for its intended purpose.

Needing insulin does not prove an unhealthy fixation on insulin.

Needing anti-hypertensive medication does not reveal a worrying psychological attachment to blood-pressure control.

Needing anti-depressants to live a functional life does not show a pattern of compulsive behaviour.

But needing ongoing pain relief? Suspicious. Apparently.

What Happened When Opioid Prescribing Fell?

If opioid prescribing were the principal driving force of the U.S. opioid epidemic, we should have seen precipitous reductions in prescribing to be followed by a substantial drop in opioid deaths.

But that is not what happened.

U.S. opioid prescribing has been declining since 2012. The percentage of adults filling an opioid prescription fell by 31% between 2008 and 2018, while the national dispensing rate continued falling to 35.4 prescriptions per 100 people by 2024.

Meanwhile, illegally manufactured fentanyl spread through the illicit drug supply.

The CDC reports that approximately 70% of U.S. overdose deaths in 2023 involved illegally manufactured fentanyl. It states that illicit fentanyl entered the illegal drug supply around 2013 and subsequently replaced heroin as the dominant illegal opioid in the United States.

Even the FDA acknowledges that prescription opioids are no longer driving the opioid overdose epidemic. 

That sentence deserves to be printed in very large letters.

The truth that remains unsaid – and will never be admitted – is that prescription opioids were never the driving force behind the opioid crisis. Never. It was always about illicit drug use.

But prescription opioids are a much easier target than Mexican cartels and curbing illicit supply. Easy target, big wins, media headlines.

Who cares about the tens of thousands of patients who suffered and even died because their life saving pain medications were taken away? Very few.

Prescribed pain medication and illicit fentanyl are not completely separate worlds. There is some crossover. But most prescription opioid abuse is due to diversion. Yes, some people with opioid-use disorder were initially exposed to opioids through a medical prescription. But the vast majority of those already had a history of substance abuse.

And that crossover is very, very small. As can be seen from the major, large scale, systemic review already cited.

Stable therapeutic use, physical dependence, medication misuse, opioid-use disorder and exposure to an unpredictable illicit fentanyl supply are very different situations. Treating them as one big problem has not only failed to solve the illicit drug crisis; it has inflicted another crisis on people living with severe pain.

The Patients Who Spoil the Story

There is one group largely missing from the replacement narrative: patients for whom opioids work.

They are not getting “high.” They are not escalating their dose uncontrollably. They are not visiting six doctors or four pharmacies. They are not searching for euphoria.

They are searching for enough pain relief to shower, sleep, work, prepare food, and care for their children. To keep living a full and functional life despite moderate to severe pain due to disease or injury.

Some patients find opioids effective, but not remotely pleasurable. Many experience nausea, itching, sedation or mental fog. Others experience pain relief with few side effects. 

Individual responses vary, as they do with every other class of medicine. For every person, it’s a case of weighing up the risks and benefits.

Opioids have unpleasant side effects, but there are few things as unpleasant as living with constant, severe, pain. I’d prefer some itching and a bit of nausea than a knife twisting in every joint, and my arms and legs feeling like they are on fire. 

What would you choose?

In people with chronic low-back pain, research has shown that those with previous prescription opioid use got greater pain relief from morphine. But they were not more likely to feel “high.” In other words, stronger pain relief did not mean stronger euphoria.

But acknowledging those patients creates a problem.

If opioids are effective and acceptably safe for a properly selected and monitored group, then the scientific mission should not be to “replace opioids.”

It is “develop more choices while identifying who benefits from each one.”

Still very worthy. Still very important. Still very deserving of funding.

But we’re no longer talking about a “crisis.” Not quite as dramatic, and not as likely to receive that sweet, sweet funding for non-opioid alternatives.

Develop Better Drugs. But Stop Destroying Patients

To be clear, I am in no way saying that opioids are harmless. Opioids can have serious side effects. Patients need to be well screened and well monitored.

Opioids can cause adverse effects, physical dependence, respiratory depression, overdose and opioid-use disorder. Higher doses and dangerous medication combinations require particular care. Patients should receive honest information, individual risk assessment and proper monitoring.

Doctors are highly skilled and the very low overdose rate in chronic pain patients shows that doctors managed this risk very well. Right up until 2016 in the U.S and about 2020 in Australia.

But saying something “has risks” is not synonymous with “must never be used.”

I take many high-risk medications to treat my complex autoimmune diseases – medications that are much higher risk than any opioid could ever be. Yet taking that risk is allowed. Encouraged. Even insisted upon. 

Why are opioids singled out and denied when Xeljanz or Rituximab are much more dangerous?

It makes no sense. Scientific sense, medical sense or common sense.

Of course better pain medications should be funded. Safer analgesics is a lofty goal that should be celebrated. New treatments that are as good as, or even better than opioids, without opioid-related risks would be a genuine medical achievement.

But we should not be taking opioids away from those who need them, who have been stable and doing well for years, before those new non-opioid pain medications are available. That means leaving people to suffer needlessly, on the promise that something better is being researched.

Pain patients should not be treated like expendable research targets. They should not be forced to surrender their pain relief and functional lives to fortify the commercial and scientific case for tomorrow’s medication.

Develop the alternatives. Fund the research. Build the careers. Make the money, even. All good.

But stop denying people who need access to long term opioid therapy for any kind of quality-of-life. Put the risk/benefit equation where it belongs, where it is with all other medications – in the hands of the informed patient.

And stop pretending that scientific progress requires opioids to fail, along with the patients who benefit from them.

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. For more information on chronic pain, the science, the politics and the lived experience, go to Pain Patient Advocacy Australia. 

You can also subscribe to Neen’s free newsletter on Substack, “Arthritic Chick on Chronic Pain.”

Why I Keep Quiet About My Use of Prescription Opioids

By Crystal Lindell

When I first started taking prescription opioids on a daily basis in 2013, I didn’t hide that information from anyone. I told my friends at church, my family, and even my then-boss.

I was in way too much pain to spend any energy worrying about what anyone thought about me or the pills I was popping.

At the time, I was still working in the corporate world. And I quickly began to see and experience the stigma that comes with opioids. It wasn’t long before every mistake I made and every emotion I had were blamed on the fact that I was taking Norco.

I still remember the time a man at work lost his temper on me. When I felt like I had the very appropriate reaction of sobbing at my desk, my then-boss immediately dismissed it to both me and the man who had screamed at me by explaining that I was “on lots of new medications.”

So, over the years, I have learned to withhold my pain medication use to new people. Sadly, this decision has only been reinforced by the fact that things have gotten worse over the last decade when it comes to opioids being a taboo. 

The media narrative that a 5 mg hydrocodone tablet is the same thing as a baggie of street fentanyl has caught on. Now, people who may not have even known what hydrocodone was in 2013 are hyper aware that it’s part of the “opioid epidemic.”

So, I hide my pain pill usage in real life. It may sound paranoid, but I have been undercover enough times to see the truth. 

When people think I’m healthy, they open up about how they really feel about opioid users. There are lots of comments dismissing us as lazy, saying things like, “Maybe he should stop getting high all the time” anytime they make even a small mistake.

I’m then put in the awkward position of having to decide whether to let it slide or defend them.

There’s a very strong part of me that wants to be the “good” opioid user. I want to show others what it looks like when people take opioids “responsibly.” I want to defend other people who take pain pills.

The problem is, once I admit that I use them too, I’m immediately moved out of the “good” opioid user category, because in their minds there’s no such thing. Going forward, everything I do would be seen through the lens of them thinking I’m high all the time.

It’s an impossible situation.

For now, I have found that the best way to navigate it in real life is to hide my health issues and my pain medication usage as long as possible. 

Yes, I write about all of it very openly online, and anyone looking for “dirt” on me would have no problem finding the truth. But most people lack such levels of information-seeking determination.

So, as long as I show up, seem alert, and come across as put together, there’s no reason anyone has to know that the pills I keep in the Tylenol bottle in my purse are actually prescription Norco.