People Who Live Without Pain Rarely Think or Care About Those Who Do

By Ann Marie Gaudon

As I crawl into bed early at night, so grateful for the bed I have, I strategically place two separate heating pads for pain relief. Simultaneously, I strategically place two ice packs for pain relief. 

What’s one to do? “A” and “B” require heat for relief, and “C” and “D” require ice for relief. 

Such is my life.

What is it like to not have pain? To just go to bed at a regular adult time, slip into your sheets, and drift off? I have no idea, and so I can only imagine this. I would have to go back at least four decades in time and I just cannot remember that far back.

It’s ironic that I am so high maintenance, but not as you might think. I couldn’t be less of a diva. The days of hair, make-up, and stylish clothes are long gone. I care nothing for those things because they don’t do anything to make me feel better. 

I putter along with regular haircuts, minimal make-up on days I can manage it, and that’s about it.

I have no fear of what any pain may or may not mean. I do not have a cascade of stress hormones flooding my system daily out of fear. That is not in my life, and is what I have achieved from a healthy dose of self-care and chronic pain management. 

What it cannot do, however, is stop a body from deteriorating, stop pain from increasing, or stop the course of disease.  

As a young person, I can assure you I never saw this coming. There are other illnesses in my family of origin, but not chronic pain as I have experienced for 40+ years.

Unfortunately, there is not a lot of help out there. Health Canada, which is the Canadian agency responsible for “helping Canadians maintain and improve their health,” claims to ensure that everyone has access to high-quality health services. 

But from all that I have read and meetings I have attended, Health Canada remains essentially clueless to the plight of a person in pain. They have always drunk the Kool-Aid of anti-opioid zealots, and believe the endless published rubbish about those medications. 

As sickening as that is (no pun intended), I was never able to find anyone with any type of power that actually was a person in pain. That’s a big problem. 

Just to be clear, this is not a column about opioids or any other type of medication. It’s about the sheer ugliness of chronic pain. For some of us, the diagnoses just keep rollin’ along. I have officially lost count. 

There are two new ones that I can tell you about. One is Baxter’s nerve entrapment, which feels like a razor sliding up into your heel with every step. For a long time, I thought it was a very stubborn case of plantar fasciitis in both feet. However, I have since learned there’s a different diagnosis entirely in my right heel. 

The second newer diagnosis is something called costochondritis. No, I hadn’t heard of it either. I thought I was having a massive heart attack when I awoke in the middle of the night in severe chest pain. I resigned myself and just felt ready to go unconscious. However, that didn’t happen. 

I was advised over the next three days to go to the emergency department, but having care-avoidant health anxiety, I refused to go. 

I was in tremendous pain and could hardly move at all, but on the third day, someone said to me that I might have pneumonia. That word is what got me to the emergency department, because I could not forgive myself if I ever infected someone else. 

It wasn’t pneumonia, it wasn’t a heart attack, and it wasn’t a pulmonary embolism. It was costochondritis, which the Mayo Clinic advises can feel much like a heart attack. Now the chest pain comes and goes.

At times I feel angry and sad for myself, but where my heart really lies is for younger people. What’s to become of the young at the beginning of their chronic pain or not quite there yet? I shudder at the thought of it. 

I recently had a young client with painful rheumatoid arthritis who was especially suffering with pain in one hip that was causing mobility issues. Practically begging her neurologist for pain relief, the response was: “No one with rheumatoid arthritis should expect to live a pain-free life.” 

They were gutted by those words. 

Is this what to expect? “Don’t expect to live a pain-free life” when there are scores of medications out there developed for just that? What is wrong with people? 

I can tell you my unscientific theory about this. People who do not live in pain rarely think or care about others that do.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 40 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.     

How CDC Cuts Endanger American Lives

By Candice Johnson

Since the Trump administration took office in January 2025, the workforce at the Centers for Disease Control and Prevention has weathered uncertainty and change.

Mass firings, communication freezes, political interference in the CDC’s scientific mission and a revolving door of leaders have created a challenging work environment for the CDC’s employees.

I’m a public health researcher who studies how working conditions affect employee health and well-being. I also worked at the CDC from 2012 to 2020. Given the turmoil imposed on the CDC workforce since Inauguration Day, I worked with a team of researchers at Michigan State University to conduct an anonymous survey of more than 600 CDC workers.

We found a CDC workforce concerned by a declining ability to achieve the agency’s public health mission, a shrinking and overworked staff and wide-ranging effects that threaten Americans’ health.

CDC’s mission is to protect and improve the health of Americans, which it fulfills by preventing, detecting and controlling disease. CDC also staffs a pool of public health experts who are rapidly deployed to respond to public health emergencies – including disease outbreaks – worldwide. The cuts to CDC put these functions in jeopardy.

Key CDC Posts Empty As Ebola Outbreak Grows

As an explosive Ebola virus outbreak takes hold in Central Africa, infectious disease experts are questioning the U.S. government’s ability to effectively respond to public health emergencies following the cuts to the CDC and foreign aid, as well as the U.S. withdrawal from the World Health Organization.

The CDC remains without strong leadership at a critical point in the outbreak response.

In August 2025, Health and Human Services secretary Robert F. Kennedy Jr. fired CDC Director Susan Monarez after she refused to accept political interference with the agency, causing multiple senior CDC leaders to resign in protest. Almost one year later, the CDC’s top leadership positions remain vacant. The agency has no director, principal deputy director, chief of staff or chief medical officer to lead employees through a complicated emergency response.

But in our survey, we were most interested in knowing how this administration’s changes have affected CDC’s rank-and-file workforce, who are on the front lines of protecting Americans’ health.

Emergency Response Eroded

Between February and April 2026, our team distributed our anonymous survey through employee and alumni groups, LinkedIn and professional networks. We received responses from 433 current and 191 former CDC employees who had left since January 2025; 95% were federal employees and the rest contractors or other nonfederal workers.

The survey questions asked how the second Trump administration’s changes have affected their day-to-day work.

In June, we presented our initial findings at the annual meeting of the Council of State and Territorial Epidemiologists as we prepare for publication in an academic journal.

More than 99% of CDC employees we surveyed – 604 out of 605 – said that the administration’s changes to the CDC reduced its capacity to respond to a public health emergency.

For example, during the 2014–2016 Ebola virus outbreak, the CDC sent its public health professionals – including me – on more than 3,000 deployments to West Africa to control the outbreak. But today, in the midst of another growing Ebola outbreak, deep cuts to the CDC workforce mean that the agency may no longer have sufficient personnel to deploy at the same capacity if needed.

Americans are already seeing this in the CDC’s response to ongoing measles outbreaks in the U.S. Public health experts note that the CDC’s communication with the public about the outbreaks has been confusing and sparse, which they attribute to the cuts.

85% of CDC Workforce Burned Out

The CDC is home to a specialized public health workforce tasked with responding to the nation’s most important health problems.

Since January 2025, the CDC has lost just over a quarter of its federal employee workforce. More than 1,000 employees were fired after their positions were eliminated, with hundreds remaining on administrative leave due to a court order preventing their firing. Resignations, retirements and contract nonrenewals have further shrunk the workforce.

“We have the same amount of work,” wrote a CDC manager whose work unit was particularly hard-hit by staff losses, “but it is not possible to do all of it with half the staff.”

Among the current CDC workers we surveyed, 85% said they were burning out.

These cuts and challenges have made CDC employees pessimistic about the agency’s future. Of the current CDC employees we surveyed, 1 in 5 have decided to leave, further straining CDC’s resources. The vast majority who left voluntarily – 95% – told us they left mostly or entirely because of changes implemented by the current administration.

“The anti-vaccine, anti-science stance of this administration meant that I could no longer in good conscience continue to work there given the type of work that I did,” a former CDC manager explained.

Similar reasons were given by senior CDC leaders and scientists who resigned in protest since January 2025, citing budget cuts, scientific censorship and political interference with the CDC’s public health mission as the reasons they resigned.

The CDC’s nonscientific workforce was also hard-hit, with the Department of Health and Human Services eliminating CDC’s digital media teams, offices handling Equal Employment Opportunity complaints and Freedom of Information Act requests, and much of human resources and acquisitions. In our survey, 94% of CDC employees said that under this administration, it became harder to do their job.

Cuts to Chronic Disease and Injury Prevention

Although the CDC’s responses to infectious disease outbreaks like hantavirus or Ebola virus tend to dominate headlines, much of the agency’s day-to-day work focuses on chronic disease and injury prevention.

Chronic diseases are the No. 1 killer of Americans, and injuries are the No. 1 killer of American children.

Despite Kennedy’s assertions that his administration will focus on preventing chronic disease, he has quietly shuttered many of the CDC’s chronic disease and injury prevention programs, including those dedicated to improving women’s health, preventing violence and injuries, tracking infertility, reducing tobacco use and promoting healthy aging.

President Donald Trump’s fiscal year 2026 budget proposed eliminating the CDC’s chronic disease and injury prevention programs entirely. The final funding bill rejected these cuts.

We asked current and former CDC employees in chronic disease and injury prevention programs what happened to their work unit under this administration. Only three of 142, or 2%, said their work unit remains fully operational and able to meet its public health mission.

We asked everyone we surveyed if they thought Americans will die because of the administration’s changes to the agency; 95% said yes.

Public Health Cuts Ripple Through the Country

Many of the CDC’s functions are invisible to the general public, making it easy to hide the extent to which the agency has been damaged.

In addition to responding to public health emergencies and preventing disease, the CDC plays a vital role in sustaining the nation’s public health infrastructure. About 80% of the CDC’s domestic budget goes to fund public health programs run by state, territorial, tribal and local partners, directly protecting health in local communities.

Health departments around the country are now grappling with sudden cuts to the federal funding that sustains their health data collection and health promotion activities.

I believe that current and recent CDC employees have the best view of how the administration’s cuts are affecting the agency. Their observations warn of a U.S. government losing its ability to protect the nation’s health.

Candice Johnson, PhD, is an Assistant Professor of Epidemiology at Michigan State University. Prior to academia, she was an epidemiologist at the CDC and a member of the CDC's Epidemic Intelligence Service.

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

A Fentanyl Vaccine Is a Horrible Idea

By Crystal Lindell

A few years ago, I saved a loved one’s life when he was overdosing on fentanyl.

His lips and fingertips were blue when I found him, and as I administered NARCAN (naloxone), all I could think at that moment was that if he was dead, I never got the chance to say good-bye.

It was one of the most traumatizing experiences of my life, and I’m forever grateful that my efforts to save him were successful.

Even with that experience, I’m here to tell you that a fentanyl vaccine is an absolutely horrible idea. And I pray that nobody I love ever takes it – even the man who’s life I saved.

This week, JAMA published an article about the current status of the fentanyl vaccine, which is in development.

In the article, Associate Managing Editor Kate Schweitzer interviews Collin Gage, a cofounder and chief executive officer of ARMR Sciences, which has begun early-phase human trials of a fentanyl vaccine in the Netherlands.

Schweitzer seems to think such a vaccine would be a net positive for the world.

"If proven safe and effective, it could become the first proactive pharmaceutical approach designed to prevent fentanyl overdose and, potentially, treat addiction," she writes.

However, as both a chronic pain sufferer and someone whose loved one struggled with fentanyl addiction, I’m here to tell you that this entire research project should be ended right now.  

First and foremost, my biggest concern is that such a vaccine would be pushed onto people who do not want or need it, including pain patients.

I can already see doctors having a policy where they won’t prescribe opioids unless the patient agrees to receive the fentanyl vaccine. They’ll claim the policy is meant to protect patients, when in reality, it would only cause them more harm.

The article even points out what those harms could look like. Schweitzer quotes Kathryn Frietze, PhD, associate professor of molecular genetics and microbiology at the University of New Mexico, who is one of many researchers working to develop vaccines against drugs of abuse.

Doctors, according to Frietze, have expressed concern about how a vaccine could complicate medical care, given that prescription fentanyl is a widely used medication for acute pain control and anesthesia.

“Can they increase the fentanyl dose medically if needed, or is it going to completely eliminate fentanyl as an option?” Fritze asked. 

Read that again. Do we really want to eliminate fentanyl as an option for pain control and anesthesia? This is a medication used in hospitals, usually on patients in severe trauma or undergoing surgery.

Do we really want a vaccine to make fentanyl ineffective for them? 

Do we really want a vaccine that requires more fentanyl to be administered?

In practice, either scenario could be disastrous, especially in an emergency situation where an unconscious patient would be unable to explain to doctors that they had the fentanyl vaccine.

The thing about fentanyl is that you have no idea that you might need it someday. We don’t usually know when we’ll need anesthesia or acute pain control.

That is particularly relevant in this situation, because the article quotes multiple experts who seem excited about pushing a fentanyl vaccine onto high-risk groups, such as college students and young adults, who are experimenting with drugs. They may not be aware that the counterfeit pill they bought or got from a friend has a lethal dose of fentanyl. 

“Overdose from fentanyl doesn’t just happen to people who are purposely taking fentanyl,” Frietze said. “People may be exposed without their knowledge.” 

So they want to go to college campuses and give students a vaccine against a very valid pain medication, when they have no idea if they will ever need it?

Schweitzer says a vaccine that specifically targets fentanyl could still allow for the use of other analgesics, such as morphine and propofol. 

As a pain patient, I’m skeptical about that. If a vaccine blocks the effects of one opioid, it may also dampen the effects of other ones.  

The other major issue with a potential fentanyl vaccine is a phrase coined by Richard Cowan in 1986: “The Iron Law of Prohibition.” That essentially means that when law enforcement targets a specific drug, the potency of other prohibited substances increases.

Or, as Cowan said, "The harder the enforcement, the harder the drugs."

If you give everyone fentanyl vaccines, people will just find even stronger drugs to take. And those drugs will likely be more deadly. It’s no coincidence that illicit fentanyl arrived on the black market just as opioid pain medication became harder to get. 

As such, a fentanyl vaccine could result in more overdose deaths, not less, as people seek substitute drugs that bypass the vaccine.

Gage’s response to that possibility is to call the fentanyl vaccine “a platform technology—one that we plan to adapt."

In other words, they will just make new vaccines for new drugs. But in practice, how long would it take to actually develop new ones? And how long would it take to get them to drug users, who are often difficult for the medical community to reach?

Trust me when I tell you that drug users and their dealers will move exponentially faster than any research and development team ever could.

In practice, the reason street fentanyl is so deadly is because it’s unregulated. Users don’t know how much they are taking or what is mixed in with it – and those two things make it more likely that the drug will cause an overdose.

The solution then is to offer drug users a regulated supply, which is what methadone treatment is. In a perfect world, if they really wanted to help fentanyl users, these researchers would be working to make methadone treatment more accessible.

Instead, they’d rather make it so patients can’t use one of the most effective pain and anesthesia medications on the market, while pushing them onto harder or less effective drugs.

It’s a bad idea, and I hope these researchers see the error of their ways before it’s too late.

Tell Me Who the Real Criminals Are

By Cathy Kean 

Close your eyes. Go back to the worst pain you have ever known. A broken bone. A car wreck. Surgery. Childbirth without relief. Stay there for fifteen seconds. 

Feel the desperation. The begging. The need for it to stop.

Now imagine never leaving that place. You feel that pain every second. Every day. No break. Not in sleep. Not ever.

That is my life. Millions of us live here.

There is something that helps. Prescription opioids do not erase my pain, but they turn down the volume enough for me to be able to shower. To work. To keep my home. To hug my grand child without screaming inside.

Then they took them away. They said it was for my own good.

Before my chronic pain worsened after the release of the CDC opioid guideline, I worked as a real estate agent and special education advocate. 

Now I cannot walk. I have lost my job. My home of 32 years is in foreclosure. Friends stopped calling. I need help to use the bathroom. My independence is a corpse they are still kicking.

And the final cruelty? The people who did this lied to you.

CATHY KEAN

The Lies Behind the ‘Opioid Crisis’

You have been told prescription opioids are killing America. In 2021, the CDC reported a 1,040% increase in overdose deaths involving synthetic opioids from 2013 to 2019. They said those deaths were largely caused by illicitly manufactured fentanyl.

Here is what they didn’t tell you in that report: For many years, CDC misclassified most of those overdoses as prescription opioid deaths, and those deaths were used to help justify the agency’s 2016 opioid guideline, which led to wholesale restrictions on opioid prescribing. 

Not until 2018 was the error quietly acknowledged by four CDC researchers. And that tens of thousands of illicit fentanyl deaths were misclassified for years as prescription opioid deaths. 

The error was so serious that in 2016 alone, over 15,000 deaths caused by illicit fentanyl were mistakenly attributed to prescription opioids. Millions of Americans were misled by these and other errors that inflated the overdose numbers.

The White House told you prescription painkillers were the enemy. The media screamed it. Meanwhile, the real causes – illicit fentanyl, heroin and methadone – were hidden inside the CDC's overdose numbers.

The Death Toll They Won't Count

Because of the CDC guideline, thousands of chronic pain patients killed themselves. 

Not because they wanted to die, but because they could no longer get the prescription opioids that made life bearable. The pain became more than they could endure. And suicide offered a way out.

Others died slowly. From heart failure. Stroke. Organ collapse. The brutal physics of untreated pain grinding a body into dust.

No one in power keeps track of those deaths or says a word about them. No government agency. No major news outlet. No one with a microphone stands up and says, "We made a mistake. We are killing innocent people."

Instead, they push Suboxone and “alternative treatments.” For money. Not thy fellow man.

We have lost our First Amendment rights in the doctor's office. If you speak up about your pain, you are labeled a drug seeker and abandoned as a patient. I would rather die at home than face contempt again in the ER.

What I Want You to Do

Now imagine those 15 seconds of the worst pain you’ve ever felt. Really do them. Feel that pain.

Could you live like that? For one week? One year?

I am not asking for your pity. I am demanding your understanding. Your voice. Your outrage.

We are not criminals. We are not drug seekers. We are not addicts. We are not statistics on a CDC spreadsheet.

We are mothers and fathers. Veterans who served you. Construction workers who built your cities. Nurses who held your hand. Grandparents who babysat your children.

And we are dying. Some by suicide. And some by the slow, grinding destruction of our lives and bodies.

So here is what I need from you:

Do not look away. Say our names. Help us get our lives back.

Because if you could spend fifteen seconds in my body — really spent them — you would not need to be asked twice. You would be screaming with us.

Cathy Kean lives in California. She is a grandmother of 9 and mother of 4. Cathy lives with intractable pain from a botched surgery, along with fibromyalgia, arachnoiditis, stiff person syndrome, lupus, Parkinson's disease and insomnia. 

Cathy is the creator and administrator of the Facebook pages Chronic Illness Awareness and Advocacy Coalition and Pain is Pain. She writes to give a voice to the millions of chronic pain patients who have been silenced, stigmatized, and left to suffer—and to ensure her grandchildren never have to ask why Grandma couldn't be there. 

How I Finally Got Health Insurance Again

By Crystal Lindell

In 2022, I was unceremoniously laid off from my job of 12 years. During the exit meeting, I was told that it would all be okay because I could sign up for COBRA!

That way, despite losing my job, I’d at least have health insurance until I could find something else.

Then, I saw the price of COBRA. It was about $500 a month. 

That’s a lot of money when you have a job, but it’s an obscene amount of money when you’ve just been laid off. 

People with a lot more wealth than me were flabbergasted that I turned it down. Extended relatives and former co-workers could not grasp why I decided to instead try the alternative health insurance plan, known as “Hope for the best.”

But looking back, “Hope for the best” has served me relatively well for almost four years now. 

I paid out-of-pocket for my routine doctor appointments, and cash for all of my monthly prescriptions. But I had to skip all my recommended preventative care, like getting mammograms. 

I also prayed every night that I wouldn’t have a medical emergency.

About 27 million Americans do that too, because they can’t afford private health insurance or the higher premiums of Affordable Car Act plans. They’ll soon be joined by over 5 million adults and children due to tougher Medicaid work rules

Yes, I still have medical debt to worry about. But I finally have real-life health insurance again! 

Oddly, it’s all thanks to the war with Iran. Let me explain.

For the last year, I had been earning a few hundred dollars a week delivering meals for DoorDash. But after we went to war, gas prices went from $2.79/gallon to $4.29/gallon in northern Illinois almost overnight. 

Suddenly, the math for most deliveries just didn’t make sense anymore. There were some orders where I was literally paying to bring someone McDonald’s.

When I factored in the wear and tear on my car, it became obvious that even a part-time minimum wage job would make more sense financially.

So, I applied at a Michael’s Craft Store because I thought it sounded fun, and then I applied at a gas station 12 minutes from my house because I thought it sounded convenient. The next day, the gas station called me back.

While I was initially hired as part-time, as of June 1, I am officially full-time.

And full-time employees get health insurance!

I signed up online right away and immediately scrolled to the most expensive plan, which was $68/week. But then I was given a $15/week discount for not being a tobacco user. (Thanks D.A.R.E.!) I also added on a $3.83/week dental plan, bringing my total health insurance cost to about $227/month.

That’s less than half the cost of the COBRA I was offered, plus now I have a weekly income to help cover it.

After years of paying out-of-pocket for all my medical care, my new plan includes some exciting features – like $10 co-pay for two medications I need every month; free preventative care like those mammograms I missed; and $20-co-pays for my doctor, who is thankfully in-network.

I’m going to call and make multiple appointments that I have been putting off, and then when they ask me how I’ll be paying for the visit, I will proudly tell them that I will be using my very own Blue Cross Blue Shield health insurance!

You might be wondering how I’m able to physically do a gas station cashier job with my chronic pain, and the answer to that question is 7-OH, a potent form of kratom. I started taking it a few months ago, and it has greatly improved my daily quality of life.

Yes, 7-OH is expensive, and yes, it does cause withdrawal symptoms if you stop abruptly, so it’s not perfect. But for me, it’s been life-changing in all the best ways. It relieves pain while also giving me energy, making me more functional than I have been in years. 

I am not exaggerating when I say that 7-OH is the reason that I am now able to work a job full-time. And by extension it’s the reason that I am able to have health insurance now.

So tonight, when I go to sleep, I’ll be praying to a God I don’t really believe in that 7-OH remains legal. For now, anyway.

But hey, at least I no longer have to worry about what happens if I break a bone or have a heart attack. Because I finally, after four long years, really do have health insurance again!

A Letter to My Younger Self on Living With Chronic Pain

By Crystal Lindell

This is a letter to myself. A letter I wish I had been able to write 13 years ago, when I first developed chronic pain at age 29. Hopefully, my fellow chronic pain survivors will find practical advice mixed with some hope in the words below.  

Dear Crystal,

I have some bad news. The pain you have in your ribs is not going to go away. 

It’s going to linger and spike, and sometimes it will make you want to slit your wrists in the bathtub. It’s going to completely change your entire life. 

In fact, the stabbing pain you’re now dealing with is going to alter your very soul.

Your entire life is going to change so dramatically, that 13 years later, it’ll be difficult for me to even put myself back in your shoes.

While I vividly remember the hopelessness, confusion and fear that’s crushing you right now, it’s difficult for me today, at age 42, to even remember your world view in 2013.

So much of what you think about the world around you, the people in it, and even of yourself is going to change. That change is going to be forced onto you by this new physical pain, which in 2026 will still have no cure. 

However, over time, and through lots of trial and error, you will eventually find a medication regime that mostly works for you. You will also finally find a doctor who believes you, and treats your pain as seriously as it demands.

There is so much other good stuff in store for you too. I promise. 

I know the concept of “good stuff” feels impossible right now, but I swear that good things will happen to you in the years to come. And so many of those good things will only happen because of the very pain that currently feels like it’s ruining your life.

For starters, the pain you’re feeling is eventually going to lead you to the love of your life.

Yes, I know you’re currently dating someone. But he is not the love of your life. Over the next few years, as your body betrays you, he will do the same. 

I know that since he is more than a decade older than you, you expect to help him through his health problems as he ages – but he is not expecting the same in return. He does not like that you now have a chronic illness, and he does not want to take care of you. He will even say this to you directly at one point. 

He is very selfish. But you’ll linger with him longer than you should because even selfish support feels like support with everything else that you’re going through. It’s ok. You’ll need time to process the loss of him in your life. And you need to play it all out – so that when you do finally meet your true love, you’ll understand what makes him so important.

The two of you will meet at a political event. You’ll both be there to advocate for pain patients to have better access to opioids. That’s right, the love of your life has chronic pain too. It’s the kind of double bad luck that almost cancels out, when you realize that it’s the very thing that brings the two of you into each other’s lives in the first place.

He’s handsome, he’s funny, and best of all, he doesn’t mind taking care of you for the rest of his life. 

You’re also going to move. And I don’t mean across town.  

Eventually you will realize that living with family is the only way you can endure all of this. But that is something you’ve already begun to realize. It will take you less than six months to decide to move in with your mom.

Yes, this means losing your part-time job as a youth leader that you love so much. It will be a heartbreaking loss. A loss you don’t deserve. There is not much good to say about this loss, other than the fact that you will survive it. And through that loss, your ability to empathize will expand. 

And while you will be able to maintain your career and even your current full-time job for the next nine years, eventually you will lose that too. That loss is only partly because of the chronic pain though. It’s more because of the burn out, which the chronic pain doesn’t exactly help with.

But it’s ok. You will still find other ways to write, and even ways to get paid a little to do it. And you will be happier without your former corporate overlords making you so miserable.

Plus, writing about all of your experiences will help countless people endure their own chronic pain. Many of them will even reach out to you to thank you for the many ways you helped them cope. Your pain will go out into the world and make it a slightly better place.

Also, in a few years, you’re going to get a cat. And that cat will lead to three more cats. I know, I know. It sounds impossible right now, but for some reason your cat allergies will fade, and those cats will eventually come to help you get through the especially bad pain flares.

For now, my most practical advice is to talk to your doctor about a prescription sleeping pill so that you can finally get some real rest. He will give it to you, I promise. 

Also, remember that doctors are not gods. They will get a lot of stuff wrong in the years to come, and you’re going to have to advocate for yourself if you want to survive. The confidence to do that will come to you first as a necessity, and then as something that’s part of your very being. You’ll wonder how you ever navigated the world without it.

One last thing – and this is especially important – I really need you to keep going. 

I need you to survive each long day – and each even longer night – so that we can make it to 2026. I need you to stay alive long enough to start to see that even a life with debilitating chronic pain is worth living. Because it very much is.

I wish that I was writing to tell you that your pain will be cured, and that everything will go back to how it was before your ribs started to feel like someone was stabbing them with a butcher knife every night.

But I really believe that your actual future is even better. Nothing goes back to the way it was before the pain started. And that’s the very best part.

Inflation Is Especially Hard on Chronic Pain Patients

By Crystal Lindell

These days it feels like just walking into a grocery store costs $100. And topping off your gas tank is the kind of thing you have to start a savings plan to achieve.

It’s not your imagination. Everything has gotten outrageously more expensive, and it’s only getting worse.

According to a recent PBS article, overall food prices are up 3.2% in the last year, with foods like beef (+15%), coffee (+18.5%), and fresh tomatoes (+40%) rising even more.

Gas prices have soared to a nationwide average of $4.49 a gallon – up from $2.98 just before the Iran war began at the end of February.

Rent and utilities are also going up, and consumer confidence is so gloomy that two-thirds of Americans are cutting back on spending.

There seems to be no aspect of life where people can catch a break financially these days, but it’s especially difficult for chronic pain patients.

Many of us live on fixed incomes, and rely on aid programs like food stamps and Medicaid.

Unfortunately, the government is not increasing the amount of money recipients get from those programs to account for inflation. So as prices go up, the only choice is to live on less.

Of course, it’s not really a choice, because many patients are already living on a bare bones budget to begin with. You can’t shift down by going to a food pantry if you’ve already been going to a food pantry for the last three years.  

So what actually happens is that we end up cutting back on essentials. We’re eating less, moving in with relatives to save money, and never turn on the A/C to keep the electric bill down. 

There’s also the fact that patients have ongoing medical expenses to contend with, like prescriptions, insurance premiums, and co-pays. Those have all increased as well.

Those of us who are able to work can’t physically endure working more hours or taking a second job to help with the constant price increases.

It also means that we have less money for the types of services that are considered a “convenience” by healthy people, but are necessities when you have a chronic illness and can’t get around well. Things like grocery and restaurant delivery services become extravagances.

On the other side of that, jobs with DoorDash and Uber used to be good side gigs, because you can choose your own hours, and take a day off when you’re having a pain flare.

I personally spent the last year earning extra cash that way, but had to give it up when gas prices spiked because DoorDash refused to increase driver pay to cover the higher cost. It was costing me more to make deliveries than I was earning. 

With all the constant financial pressure, it just feels important to lay everything out in one place, and to validate what many patients are struggling with these days. 

When you’re already dealing with chronic pain that makes it painful to live, it’s easy for the whole situation to make you feel depressed, despondent, and lose hope. 

Making it worse is that there doesn’t seem to be any sort of path or plan to make any of this better. Sure, maybe gas prices will inch down a few cents, and maybe you’ll be able to find a good two-for-one deal on beans at the grocery store. 

But in the grand scheme of things, when your health is bad and your financial health is worse, it’s difficult to keep going.

But keep going is exactly what you need to do. Because if you’re still here, then the world still needs you in it. And you have no idea how much you may be helping others to endure all this as well.

Maybe one day, the government will finally start working for the people again, and we can start to dig our way out of this. Crazier things have happened.

A Simple Chart Destroys a Myth About the Opioid Crisis

By Neen Monty

There’s a simple reason the narrative around the “opioid crisis” falls apart when you actually look at the overdose data.

Because the data doesn’t show what they claim it shows. 

And that false narrative has been retrofitted to cover the deception and lies wrought by bad actors in the U.S. healthcare system.

The chart below tracking overdose deaths by opioid type tells two stories:

1. Prescription opioid deaths rose, stabilized, and then fell.

2. Fentanyl arrived… and everything exploded.

Those are not the same curve. Those are not the same problem.

There are two epidemics. And one deliberately blurred narrative.

In the United States, prescription opioid deaths peaked around 2012, at about 5 deaths per 100,000 Americans. 

Meanwhile, fentanyl-related deaths – almost non-existent before 2012 – began rising exponentially as illicit fentanyl entered the black market.

In 2023, they peaked at 22.2 deaths per 100,000 people. By then, overdoses linked to prescription opioids had fallen to 3.8 deaths per 100,000.

That means there are almost 6 times the number of overdose deaths caused by illicit fentanyl than prescription opioids.

Yet prescription opioids remain the target.

That “opioid crisis” curve?

That’s illicit fentanyl. Not pain patients. Not prescription opioids. Not doctors treating disease.

The Uncomfortable Truth

When overdose deaths skyrocketed, prescription opioid deaths were already flattening out and falling. That should have changed the narrative right there.

But the narrative stayed the same.

The explosion in deaths aligns with one thing: iIlicit fentanyl and its analogues flooded the U.S. drug supply with counterfeit pills of unknown, often lethal, potency.

That is why deaths surged, not because someone with intractable rheumatoid arthritis got oxycodone prescribed for their pain.

The numbers don’t lie. If the opioid crisis were really about prescriptions, the lines on the chart would look very different.

So why didn’t the narrative charge?

Because blaming illicit fentanyl means:

• Confronting illicit drug supply chains

• Admitting policy failure

• Acknowledging complexity

Blaming prescriptions is easier. It creates easy villains to target:

• Doctors

• Patients

• Pain medication

And it opens the door to:

• Restrictions

• Guidelines

• “Education programs”

• Entire industries built on fear

Who paid the price?

Pain patients. People with cancer, autoimmune disease, neurological damage, and severe structural pathology.

People who were stable. Functioning. Living.

Until they were cut off.

This was never about prescriptions. The chart makes one thing brutally clear: The U.S. overdose crisis is a fentanyl crisis.

Everything else is a false narrative. A fairy story. One designed to vilify people who are already among the most vulnerable people in our communities – the ill, the disabled, people living with severe pain.

It’s important to note that by the time Physicians for Responsible Opioid Prescribing (PROP) was created in 2012, prescription opioid deaths had already stabilised and were falling.

PROP was instrumental in creating the CDC’s infamous 2016 opioid prescribing guidelines. But there was no need to restrict opioid prescribing. There was no need for forced tapers that lead to suicides and overdose deaths. There was no need for dose ceilings that meant people’s pain was no longer treated adequately.

There was also no need for the fabrication of “evidence” that does not stand up to even a little scrutiny. Just read the studies that the CDC guidelines are based on. They do not show what you have been told they show.

But no one actually reads the studies. No one examines the data. No one questions. Doctors just blindly follow the guidelines. It’s hard to blame them when they face prison time if they don’t.

It has been ten years since the forced tapers started in the U.S. Six years since Australia blindly copied this failed policy. No one in Australia bothered to read the research. Australia just copied the U.S. guideline and allowed politicians to decide who gets pain relief and who does not.

Australia could see the policy going horribly wrong in the U.S. Yet it implemented those same policies and tortured Australian chronic pain patients the same way. The same is true for Canada and the UK as well.

This should never have happened.

Patients on three continents have been abandoned, left to suffer in agony day after day. Given psychological therapies for physical disease and injury. And no one says a word. 

I have contacted many politicians, journalists, and senior public servants in Australia.  No one will take this on. No one will right this wrong.

And the media continues to push a false narrative about an opioid crisis that does not exist. But it gets clicks.

It may be futile, but my life and those of many others depend on access to safe and effective opioid therapy.

And so, I will continue to fight.

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.”

Managing Expectations Is Often Key to Chronic Pain Treatment

By Chris Seenan

In a 2026 study I conducted with colleagues on people with peripheral arterial disease, one participant described how leg pain had disrupted his golf for years. It forced him to stop mid-round, shake his leg and apologise to his playing partners while he waited for the pain to pass. He found it mortifying. 

Then he tried a small electrical device that delivered gentle pulses through pads stuck to his skin. He still had pain. But he could get round the course.

When we measured his walking on a treadmill, we found no improvement. He had not noticed. That was not the outcome that mattered to him. Before the study ended, he had already gone out and ordered his own device.

A different participant reached the opposite conclusion. The pain was still there when he used the device, he said. It had not done him any good. And he was right, in a narrow sense. The device had not eliminated his pain. 

What it had done was reduce its intensity and delay its onset, allowing him to walk measurably further. His expectation of complete relief meant that genuine, partial relief felt like failure. He concluded the treatment did not work.

The study did not tell a simple story of success or failure. For some participants, standard treadmill measures did not capture what had changed in daily life. For others, measurable improvements still failed to feel meaningful because they fell short of what the person had hoped for. 

The difference was not only the treatment, or the severity of their condition. It was what each person had been led to expect.

Recognising Relief

Both men were living with peripheral arterial disease, a condition caused by a build-up of fatty deposits inside the arteries that supply the legs. It affects an estimated 236 million people worldwide. 

Its hallmark symptom is a cramping pain in the calf during walking that eases with rest. Over time, it can shrink a person’s world, limiting independence and increasing the risk of serious cardiovascular problems.

The recommended first-line treatment is supervised exercise therapy: structured exercise sessions led by trained professionals. But in many countries, access to supervised exercise therapy remains patchy and under-resourced. That gap is fertile territory for the wellness market.

Transcutaneous electrical nerve stimulation (TENS) delivers small electrical impulses through electrode pads on the skin to interfere with pain signals travelling to the brain. There is evidence that it can help with some kinds of pain, and it is used in hospital pain management settings. It is not a wellness product. 

In our study, we explored what happened when people with peripheral arterial disease used TENS independently at home, outside the controlled conditions of a clinical trial.

The findings point to something standard clinical tests rarely capture. Expectation can shape whether useful relief is recognised as useful.

That finding matters well beyond this particular device or condition. The global wellness industry is worth over a trillion dollars and operates with minimal regulatory oversight. People living with painful long-term conditions are among its most heavily targeted consumers. 

Companies sell electrical stimulation devices, supplements and wearable gadgets to people in chronic pain, using influencer testimonials in place of evidence and social media algorithms to reach people who are frightened, frustrated or in pain.

When a product fails to deliver the transformation it promised, patients rarely conclude they were misled. They conclude that nothing can help them. In conditions where reduced physical activity carries real health consequences, that conclusion is not merely disappointing. It is dangerous.

Poor Communication Hinders Treatment 

This is where the study speaks to a much wider problem. Whether a person is using a clinical device, a wearable gadget or a supplement sold online, they are often asked to judge it against expectations they did not set for themselves. Even legitimate, clinically tested treatments can be undermined by poor communication about what to expect.

The golfer’s experience illustrates this clearly. He valued an outcome that no clinical trial had thought to measure: the ability to play a round of golf without humiliation. Once he understood the device could offer that, it worked for him. His fellow participant was never given the chance to find his equivalent.

A market built around selling hope is poorly equipped for that kind of honesty. But the same danger can appear even when the person giving advice has medical credentials.

Research shows that even medically qualified doctors who become prominent wellness influencers on social media are subject to many of the same pressures as their unqualified counterparts: to build a personal brand, produce content constantly, stand out from competitors and make advice sound more certain than it really is. 

Having a medical degree does not make someone’s Instagram post better at managing a patient’s expectations. It just makes it more convincing.

What actually helps requires something platforms cannot provide: time, a genuine clinical relationship and communication that is not contingent on making a sale. 

It requires asking a patient not just whether their pain has reduced, but what they were hoping to do that pain had been stopping them from doing. It requires explaining that partial relief is still relief and that the outcome worth measuring might not be the one on the form.

That kind of honesty does not feature in any influencer’s discount code, medical degree or otherwise. But for the person who just wants to get round the golf course, it might be the most important part of the treatment.

Chris Seenan, PhD, Senior Lecturer in Physiotherapy at the University of Stirling 

His research focuses on the lived experiences of people with long-term conditions, particularly Peripheral Arterial Disease (PAD), Diabetes, and Chronic Pain. 

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

Lawsuit Claims ChatGPT’s ‘Unlicensed Practice of Medicine’ Led to Teen’s Death

By Crystal Lindell

The parents of a 19-year-old college student who died of an accidental overdose are blaming ChatGPT for giving their son deadly advice about his drug use. 

Leila Turner-Scott and Angus Scott are suing OpenAI – which makesChatGPT -- and founder/CEO Sam Altman over the death of their son, Sam Nelson.

They allege Nelson was seeking advice on combining different drugs, and ChatGPT encouraged him to take the prescription drug Xanax to treat nausea caused by kratom.

“Sam was a smart, happy, normal kid. I talked to him often about internet safety, but never in my worst nightmare could I have imagined that ChatGPT would cause his death. If ChatGPT had been a person, it would be behind bars today,” Leila Turner-Scott told Tech Justice Law, which helped file the lawsuit.

“Sam trusted ChatGPT, but it not only gave him false information, it ignored the increasing risk he faced and did not actively encourage him to seek help.”

According to the lawsuit, ChatGPT “engaged in the unlicensed practice of medicine” when it advised Nelson to take Xanax to counteract the nausea caused by a high dose of kratom. He died in 2025 from a fatal combination of Xanax, kratom, and alcohol.

SAM NELSON

Nelson’s parents are seeking monetary damages, but they also want the court to pause OpenAI’s rollout of ChatGPT Health, a platform that allows users to upload medical records and receive personalized health advice.

Unfortunately, this whole situation is the logical outcome of patients not having candid conversations with their doctors about their use of drugs, including kratom. Even if they get up the courage to do so, most doctors will dismiss kratom as dangerous and ineffective, and then end the conversation.

Personally, years ago I brought up natural leaf kratom with my psychiatrist, who I thought was very progressive and open when it comes to substance use. He immediately told me kratom was way too dangerous to use and shut down the discussion. I was shocked because I had already been using kratom for months and knew first-hand how mild it actually was.

Aside from how interactions like that erode trust between patients and doctors, poor access to healthcare also sends patients to seek answers from less reliable sources. In the past, that would mean talking to friends and family, or to look for answers online in places like Reddit.

Today, however, many turn to artificial intelligence and chatbots like ChatGPT. A ​recent report from OpenAI estimated that 40 million users ask ChatGPT healthcare-related questions daily.

But ChatGPT does not have a medical degree. It’s essentially an advanced “auto complete” AI system, which means it may give bad medical advice.

I can’t imagine why ChatGPT would advise anyone to take an anti-anxiety medication like Xanax for nausea, much less nausea induced by another substance. It’s the kind of bad medical advice that would probably be immediately down voted on Reddit.  

According to the lawsuit, Nelson used ChatGPT repeatedly over the course of 18 months, asking for advice on how to get high by combining prescription and recreational drugs. ChatGPT initially advised Nelson to seek medical help, but over time “became a validator of harmful behaviors.”

Drew Pusateri, a spokesperson for OpenAI, told Reuters that the situation was ​heartbreaking, and that Nelson used an earlier version of ChatGPT that is no longer available. 

“ChatGPT is not a substitute for medical or mental health care, and we have continued to strengthen how it responds in sensitive and acute situations with input from mental health ​experts,” Pusateri said. “The safeguards in ChatGPT today are designed to identify distress, safely handle harmful requests, and guide users to real-world help.” 

At the end of the day, ChatGPT is still learning and is not always a reliable source of information. That’s why the best solution is to make medical professionals more accessible and more open to the types of discussion that patients might be seeking help on.

We Need To Talk About Suicide Risk From Untreated Chronic Pain

By Neen Monty

Doctors, policymakers, journalists, and pain experts endlessly warn about the risk of overdose from long term opioid therapy.

But almost nobody talks about the risk of suicide from untreated pain.

Why is this being ignored? Swept under the rug?

Refusing to treat severe pain is not a neutral decision. It is not “playing it safe.” It is not “erring on the side of caution.”

It is a clinical decision that elevates one small risk, while pretending the other barely exists. 

Even when that risk is significantly larger, and not even remotely comparable.

Let’s look at the actual numbers. The annual overdose death rate for chronic pain patients prescribed long-term opioid therapy is estimated at:

• 0.017% to 0.256% per year

• Around 0.014% annually at lower doses

• Roughly 0.25% annually at high doses (>100 MME/day)

• Roughtly 0.75% annually at very high doses (>200 MME/day)

Look at those numbers. Take them in. Understand how small that risk is.

And those numbers are from recent, large scale, well designed studies. That is what the evidence says. Not the rhetoric.

Yet overdose risk is the only risk anyone talks about. The risk used to justify forced tapers. The risk used to deny prescriptions. The risk used to terrify doctors into abandoning pain patients.

Now let’s compare it to the suicide risk associated with chronic pain.

Studies suggest:

• 5–14% of chronic pain patients attempt suicide

• Chronic pain patients have a suicide risk 2–3 times higher than the general population

• Around 9% of all suicides in the United States involve chronic pain

Take a good look.

It’s not 0.014 percent. Or 0.25 percent.

It’s five to fourteen percent.

Unlike the overdose rhetoric, this is not a theoretical or hypothetical “what if.”

And the suicide numbers are going up, as more and more people are force tapered off their opioid pain medications.

The cruel irony is that the pain management providers often treat opioid overdose as the worst possible outcome, while treating suicide is an unfortunate but unrelated side issue.

But uncontrolled pain is devastating. It destroys lives.

This is not hard to understand. Think about the worst pain you’ve ever experienced. Now, imagine it did not go away. Imagine you have to live with it every single day for the rest of your life. How long could you handle that?

Uncontrolled pain causes:

• hopelessness

• isolation

• sleep deprivation

• loss of identity

• financial collapse

• disability

• relationship breakdown

• depression

• fear of the future

And if a person expresses any of these fears, they are often deemed as “catastrophising.” The psychological harm caused by uncontrolled pain is substituted as the cause of that pain.

And patients get psychological treatment, when what they really need is pain relief.

They are not the same thing. You cannot switch cause and effect and expect a good outcome. You cannot make physical pain go away with psychological therapies. 

The best you can hope for is improved coping skills. But no one can cope with 8+ pain on a daily basis.

No one.

Not for very long, anyway. Not when you know that pain is never going away. How long could you cope with that?

Eventually, for some people, it causes the desire to escape. And there is only one way to escape, when doctors refuse to treat the pain.

Not because people living with severe, untreated pain are weak. Not because they are “catastrophising.” Not because they need a mindfulness workshop or some grounding.

Because severe, relentless pain changes human psychology.

That should not be hard to understand. If you put your hand on a hot stove, your nervous system screams at you to escape. Take your hand off the stove!

What exactly do people think happens when that signal never stops?

For years? Or decades?

I know that many clinicians choose to believe this kind of pain does not exist. That no one has pain that is a constant and severe 8+. 

That is not true. That’s what we call denial. And it does a lot of patient harm.

My pain is an 8+ every day, for much of the day. My pain is not amplified by psychological issues. My pain is purely physical. I have been in pain for 20 years. If you think I haven’t learned about pain and coping skills, then you are doing me a grave disservice.

And here is the part nobody wants to say out loud:

When a clinician refuses to adequately treat severe pain, they are making a risk calculation.

They are deciding that preventing a comparatively rare overdose death is more important than preventing the far more common risk of suicide.

It makes no sense, not logically, not medically.

But it is true.

Every medical decision involves risk trade-offs. Medicine is all about risks vs benefits.

We accept bleeding risks to prevent stroke. We accept infection risks during surgery. We accept chemotherapy toxicity to treat cancer.

But somehow, in pain medicine, only one risk counts: Overdose.

Nothing else matters. Everything else disappears. The suffering disappears. The suicide risk disappears. And the patient disappears.

But the pain does not disappear.

Even worse, pain patients are often blamed for the emotional consequences of living in agony.

If they become distressed, hopeless, fearful, withdrawn, anxious or depressed, that is now framed as a psychological problem, a mental illness that requires psychotherapy, rather than an understandable and normal response to relieve their physical suffering.

Imagine applying that logic anywhere else in medicine.

An amputee becomes depressed and hopeless because they can no longer walk.

Would we respond by saying: “Have you tried reframing your thoughts?”

Or would we offer them treatment? Prosthetics? A wheelchair? The ability to regain some of what they have lost?

A person loses their hearing, and becomes depressed and hopeless because they can no longer communicate.

Would we respond by saying: “Have you tried learning about how hearing works?”

Or would we teach them lip reading and sign language, and introduce them to the deaf community?

I could list a million examples. The point is, we should treat the problem. In no other forum do we withhold treatment and offer psychological therapies that are inappropriate and ineffective, rather than treat the actual pain.

None of this means that opioids are risk-free. They are not.

Opioids can absolutely cause harm, especially when combined with sedatives, are used recklessly, or prescribed without appropriate monitoring.

But pretending that untreated pain is safer than treating with opioids is not evidence-based medicine.

It is ideology.

And the people paying the price are patients trapped in severe pain with fewer and fewer options.

Medicine loves the phrase: “First, do no harm.”

But untreated and undertreated pain is doing harm.

Patient abandonment is harmful. Forcing people to suffer while congratulating yourself for reducing opioid prescribing is harmful.

Sometimes, it is simply choosing a different kind of death for your patient. 

An earlier death.

One that happens quieter.

One that is easier to ignore.

One that can be separated from lack of treatment.

One that can be attributed to poor mental health, instead of pain.

One that leaves no scandalous headline.

One that policymakers do not have to feel responsible for.

Perhaps that is the real issue. Overdose deaths are visible, while pain patients are invisible.

So only one becomes politically inconvenient.

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

Why Chronic Pain Patients Often Pretend to Be Healthy

By Crystal Lindell

Whenever I meet new people, I like to spend a little time in that magical in-between land where they don’t yet know I have chronic pain.

It’s a place that only exists in fantasy, but it lets me play pretend. 

I get to pretend that I’m just a regular person whose entire life does not revolve around my pain.  

How long I get to stay in that fantasy land with new people depends on a few factors. Namely, how often I have to see them, how effectively my medication is currently working, and how often my pain is flaring. 

Of course, because I write about my health issues online, it’s also greatly dependent on them not Googling my name.

But it’s fun while it lasts.

Look at me! I’m just a regular person! I don’t need 15 hours of recovery time after activities! Rainy days don’t render me incapable of getting out of bed! I can definitely skip sleep to get more work done!

I’m TOTALLY HEALTHY!

In essence, I’m socially masking. But instead of trying to mask my true personality to fit in, I’m trying to mask my physical pain.   

Eventually, my body always betrays my charade though, and I have to reveal at least some of my health issues. It usually happens because I have to cancel plans due to a pain flare, or because I get an injury.

Even then, I still only like to reveal small bits of information. I don’t give an entire back story and list of diagnoses right away. I only share what I need to.

I don’t have Ehlers-Danlos Syndrome, I have “a genetic condition.” I don’t have intercostal neuralgia, I have “some pain in my ribs sometimes.”

There’s a common trope that people with chronic health issues like to let it define their entire identity. Doctors often point to this as a reason why people might be claiming to be sicker than they actually are. Like it’s a fun fad.

But that’s not my experience at all. Yes, my chronic health issues do define my entire identity – but I do not like it. In fact, I hate it. 

I want to be a regular person so badly – even if it’s just in the minds of casual acquaintances. I want to be who I remember I was before I started having chronic pain. I want to be reliable, bubbly, and sober.

Of course, there’s one major downside to always trying to hide my chronic pain and my health issues from new people: It makes it that much harder for others to ask me for help.

That’s why I chose to write online about my chronic pain so openly. I want people to know that they are not alone, and I want to share things with them that have helped me survive in this broken body.

I just don’t always want that experience in real life, with real people, in real situations.

That said, over the years, I have found that when my health issues do eventually come up in-person, many people are often quick to confide that they are also hiding their own ailments, and their own need for help.

When I share my health-related secrets, theirs usually come flooding out as well. And if not theirs, then the struggles of loved ones and those they care for.

Then, once that bridge is crossed, we can commiserate. More importantly, we can share the secret ways in which we cope.

As the fantasy of being healthy dies, true friendship blooms. But that doesn’t mean the fantasy wasn’t magical while it lasted.

In the end, the truth is most people aren’t going around pretending to be sicker than they actually are. Rather, a lot of people are trying to pretend that they are healthier than they ever could be – myself included.

The Downside to Powering Through Pain

By Crystal Lindell

I spent the last few days being incredibly active physically, and using 7-OH to help me power through my pain.

And I’m going to be honest with you: It was FANTASTIC… in the moment.

I got so much stuff done! I felt amazing. And other than the fact that I had to take a bite of a 7-OH tablet every few hours, I got to pretend I was completely healthy!

If you’re unfamiliar with it, 7-OH is an alkaloid that occurs naturally in kratom. When concentrated, it has opioid-like effects that relieve pain and boost energy levels. 

I was swimming in wins after I took it.

But, today? Today does not feel fantastic. Today feels like hell.

When I woke up, I realized that all that activity was done with a predatory loan, and now the bill is due.

Every joint hurts, my eyes are extremely dried out, and the bottom of my right foot is swollen because I have been ignoring my bone spur for the last week. I struggled to even stand up out of the bed and walk to the bathroom.

I am also completely exhausted.

Over the years, anti-opioid advocates have started to spread the idea that pain medication is bad because it covers up pain that your body is trying to communicate. For example, if you don’t feel like you can walk on a sprained ankle, it probably means you should not be walking on your sprained ankle.

This has always annoyed me because my most prominent pain – intercostal neuralgia in my ribs – is both unexplained and incurable. It’s not trying to communicate anything at all. It just IS. And the only thing I can do is treat it with pain relievers.

But that makes it easy for me to forget about all the other ways that having Ehlers-Danlos Syndrome impacts my body. My joints are not as strong as other people’s, I seem to get injured more frequently, and just existing causes exhaustion.

The good news is that I can take pain medication to power through all that if I need to. And I have recently found 7-OH to be especially great at helping me do that. 

The bad news is that powering through pain and fatigue will eventually catch up with me – an effect that I’m clearly dealing with today.

I definitely do not want anyone to think that I am siding with the anti-opioid crowd about how pain medication is bad because it covers up symptoms. Pain medication is a godsend. And many chronic pain patients – myself included – desperately need to power through because we have no other choice. 

When the pain lasts for years, or even decades, you can’t just stay in bed all day “listening to your pain.” The world doesn’t work that way. 

But perhaps it is best to admit that there is a limit to just how much we should be using pain relievers to power through. And maybe it is wise to make sure that we don’t go too far past that limit – if only because the bill will eventually come due. 

As for me, I will be spending the rest of the day paying for my excesses over the last week with lots of naps and recovery time. Hopefully, I’ll be relatively functional again soon.

I will definitely be using 7-OH again. But next time, I’ll also be taking breaks and listening to my body. 

How to Dress When You Go to the Doctor

By Crystal Lindell

I always wear mascara when I go to the doctor. 

In fact, every time I have a doctor’s appointment, I leave myself plenty of time beforehand to shower, curl my hair, put on a nice outfit, and do my makeup.

It may sound unrelated to medical care, but it’s worth it.

You see, there’s actually a dress code for doctor’s appointments that nobody at their office ever tells you about. Rather, you just have to figure it out on your own.  

The common misconception is that you should look as sick as possible when you show up for a visit. A lot of patients assume that looking disheveled while wearing pajamas is the best way to convey just how crappy you feel. Not to mention the fact that being sick means you probably have less energy to dress nicely anyway.  

But doctors are just as ableist as the rest of society, and the truth is they don’t actually like people who look too sick. In my experience, doctors will actually treat you better if you get a little bit dressed up.

Not too dressed up, obviously. You don’t want to show up in a suit and tie, or a dress. But you do want to look at least as nice as you’d look for a casual date. Showered, business casual clothes, and light makeup if you present as female.

Dressing nice conveys that you are trying to take care of yourself, and doctors like that. In essence, they want to invest their time and energy into patients who are also invested, which dressing nicely conveys.  

In 2010, Consumer Reports surveyed 660 primary care physicians and found that being “respectful and courteous” was the second most important thing doctors said patients could do to get better care. 61 percent of physicians said it would help very much.

Note the word "respectful." And how doctors admitted that showing them respect leads to better care. Make no mistake, doctors very much see how you present yourself in appointments as a sign of how much you respect them. 

It all makes sense, when you consider how many doctors love their own dress codes, e.g. their famous white coats, which they use to convey authority.

I know it is tempting to show up to appointments in the comfiest clothes available. I also know that it’s not always ideal to use precious time and energy to shower and pull yourself together. But it’s one of the few ways you can control how good your medical care is. 

So it really is worth it to grab a nice shirt and a little mascara before you head to the doctor’s office.

EDS Means a Life Filled With Ankle Sprains

By Crystal Lindell

I sprained my ankle again last week. If you have ever sprained your ankle, you know that swearing is more than warranted. 

After stepping on a crack in our driveway, my stupid goddamn left foot just immediately rolled right under me. Within seconds, it was the size of a baseball. 

I have spent the last few days doing RICE: Rest, Ice, Compression, Elevation. The bruises that developed have spread, making it look like I stepped in navy paint. 

I wish I could say it was the first time I sprained my ankle, but I have hypermobile Ehlers Danlos Syndrome (EDS). As such, I’ve been spraining my ankle on a regular basis since high school. I even have my own personal stash of crutches and ankle wraps always at the ready. 

The first time it happened, I was practicing a dance routine in socks on a wooden floor at my high school and – WHACK! — I hit the ground.

Another time, I tripped off the edge of a sidewalk.

I have also fallen down a flight of stairs; landed wrong during a jump sequence in my Jazzercise class; and face-planted while running into a Target store to shop.  

Just because it happens a lot though, doesn’t mean it hurts any less. The day after it happened this time, I could barely get myself to the bathroom, as the pain radiated through my body into my chest. And that was with pain meds! It was hell. 

Until recently, I always blamed myself for these falls. I thought I was just careless when I walked. I thought, somehow, I got distracted when I was going down steps. I figured that I should have worn better shoes. That I shouldn’t have been practicing a dance routine in socks.

I genuinely thought that I was an idiot.

I’ve also lost count of how many times someone accused me of spraining my ankle for attention. I don’t know how that would even work, but logistics don’t stop people from being cruel.

Anytime I needed crutches or a day off school or work to recover, I was also accused of being lazy, overdramatic or a wimp. 

But then on March 15, 2018, I was diagnosed with hypermobile EDS by a doctor at the University of Wisconsin-Madison.

While he was evaluating me he said, “I bet you sprain your ankles a lot, huh?”

“Ummm. Yes!  How did you know?”

“Well,” he said. “Your ankles bend way past the point where they should, so if they go just a little bit further, BAM! They just roll right under. And then you sprain them.”

It’s difficult to explain the emotions that come with such a revelation. I couldn’t believe there was finally a reason beyond “I’m bad at walking.”

It turns out, my ligaments just don’t work the way they are supposed to.

It wasn’t just ankle sprains that my EDS diagnosis shed light on. Another symptom of EDS is that I bruise much easier than other people. 

It doesn’t bother me much, but it did really bother the doctor I saw at the women’s health clinic in grad school, years before my diagnosis. She was certain that my body being covered in bruises meant that I was being abused by my then-boyfriend. She tried multiple times to get me to open up to her and call the abuse hotline. 

I most certainly was NOT being abused though. Not a single bruise had come from him. Thankfully, that doctor never involved the authorities without my consent.  

Unfortunately, that’s not the case for many parents who are wrongly accused of abusing their undiagnosed EDS children for the same reason though, i.e. lots of bruises. It’s just one reason that refusing to diagnose kids with EDS or their genetically connected parents can have very dangerous consequences. 

There’s a lot of discussion these days about whether or not it’s worth it to be diagnosed with EDS. A lot of doctors think it’s being over-diagnosed, claiming patients just want the label for attention or some other vague reason.

I’m in a different camp though. I think EDS is still exponentially under-diagnosed. There is value in understranding our bodies, and that’s what a diagnosis like EDS brings. After all, we can’t cope or treat things that we refuse to even name. 

I suspect that many of my family members also have EDS. While most haven’t had the resources to get their own diagnosis, mine was enough for them to start understanding. It helped shed light on the things that their own bodies have always done. Many of them have come to realize that their injuries and pain were also not their fault.  

Hypermobile EDS is a very real condition, with very real physical markers, and very real symptoms. It causes very real pain. 

Patients have a right to know when they have it – just like they have a right to know that they have any other medical condition. Any doctor who believes otherwise shouldn’t be working in medicine. 

As for my ankle, it’s slowly getting better. The swelling has gone down significantly, and I’m hoping that within the next couple days I’ll be able to fully walk on it. Now my goal is to just make it through the rest of 2026 without another sprain.