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.

The Feds Are Pushing for Unprecedented Access to Your Medical Records 

By Jennifer Oliva

You might assume that what you tell a doctor stays between you, your physician and perhaps your insurer. But the reality is more complicated.

The Health Insurance Portability and Accountability Act, the federal privacy law that governs health information and is commonly known as HIPAA, is narrower than its reputation suggests. 

It regulates hospitals, physicians, insurers and their business associates, but not the health data you generate everywhere else: not the period-tracking application on your phone, the internet search you ran about a diagnosis, the DNA you mailed to a genealogy company or the wearable that counts your heartbeats.

Even the records HIPAA does cover can be shared, sold or handed to the government in ways that might surprise you.

This gap in protection matters more than ever because the U.S. government is pushing hard to gather health data domestically and abroad. This is happening even as a growing body of research shows that the safeguard which these efforts to collect data lean on – anonymizing data by removing identifying information to make it difficult to trace back to an individual – is far weaker than officials claim.

As a professor of law at Indiana University, I study health information privacy and medical data regulation, which includes tracing how sensitive health information moves among clinics, government agencies and law enforcement. As a co-investigator on a federally funded study about opioid prescribing, I rely on health data in my own research. I appreciate its value for science, and I also see the danger of collecting it without meaningful safeguards.

Limits of Medical Privacy

HIPAA gives you several rights: You can see your health records, demand corrections and expect that a covered provider will not casually disclose your information.

But the law also permits release of some information without your consent. A hospital fully bound by HIPAA may release certain types of records without your authorization and without telling you. 

There are roughly a dozen such categories. Information about treatment, payment and routine healthcare logistics require no sign-off. Neither does information released for public health reporting, law enforcement, judicial and administrative proceedings, health plan oversight, research or the broad catchall of essential government functions.

The statute is also thick with additional exceptions. In practice, much of your health information can be shared through these many open doors. And once data is sent outside the system covered by HIPAA, the HIPAA limits fall away.

For instance, prescription drug monitoring programs, which every state now operates, assemble detailed logs of who filled which controlled substance prescription and when. Federal law enforcement can often access these logs with a self-issued administrative subpoena – an order that doesn’t require a judge’s approval or oversight.

These programs have expanded beyond opioids into a dragnet that shares health data across state lines, exposing patients who seek reproductive or gender-affirming healthcare to surveillance far from home.

Health records can flow to many destinations under different rules. A given disclosure might feel more like a violation depending on who decides where it can go and who can then see it.

RFK Jr.’s Push to Access Health Records

Since the spring of 2025, Health and Human Services Secretary Robert F. Kennedy, Jr. has sought federal access to Americans’ medical records to investigate whether vaccines cause autism. The scientific community has studied this question for decades and has shown decisively that they do not.

According to KFF Health News, HHS has been courting state health information exchanges – the little-known systems that let hospitals and clinics swap detailed, identifiable patient records – and asking how those records might be used for vaccine research. 

One proposal floated by state organizations would give HHS data on 90% of Americans’ medical records by 2028. In Nebraska, millions of federal grant dollars have flowed to a statewide health information exchange nonprofit that has cooperated with the effort.

Large health datasets can be useful. Pooled records can expose drug side effects, track outbreaks and reveal disparities in care that smaller studies miss. Public health has always depended on some surrender of individual privacy for collective benefit.

The concern is not that the government should never collect health data. It is that meaningful safeguards have not kept pace with the scale of collection and capabilities of modern data analytics.

In seeking access to Americans’ medical records for a vaccine and autism study, HHS has declined to say how many states are involved, what data it collects, who can see it or how it will be protected.

University of Maryland school of medicine professor Dr. Omer Awan fact-checks Health and Human Services Secretary Robert F. Kennedy Jr.’s claims about COVID-19, vaccines and autism.

Building a comprehensive repository to chase a question that science has already answered inverts the logic of research. Usually a hypothesis justifies the data collected, rather than the reverse.

Collecting identifiable records for tens of millions of people in a single database also creates a target for breaches, secondary uses that no one consented to and abuses by current or future administrations with different priorities.

‘Anonymized’ Health Data Doesn’t Protect Your Privacy

Officials have offered reassurances that data will be aggregated and stripped of identifiers so no individual can be singled out.

Decades of computer science research undercuts that promise. A study published in Nature in June 2026 sharpened the point, showing that in this age of artificial intelligence, stripping identifiers from patient records to protect identity does not protect all patients equally.

The researchers audited AI diagnostic models trained on clinical data, including chest X-rays, electrocardiograms and electronic health records. They asked whether an outsider could tell if a particular person’s data had been used to build the model. 

For instance, confirming that someone’s record helped train a cancer-prediction tool can reveal that that person has cancer. This exploit is known as a membership inference attack.

The research team found that while the average risk of being identified from data stripped of identifying information often looked reassuringly low, some patients faced near-certain reidentification 

The burden fell unevenly: Underrepresented groups, sorted by race, insurance status or diagnosis, were most at risk. Those most exposed were frequently already most vulnerable to discrimination.

Researchers have long established that removing identifiers from rich datasets does not reliably protect the people in them, and that identification gets easier the more information you have. Today’s AI technology makes it possible to carry out these attacks remotely and quickly.

The U.S. government’s appetite for health data does not stop at the border. As ProPublica reported in June 2026, the State Department has been conditioning lifesaving aid to African nations on access to their citizens’ health data.

Under the Trump administration’s global health plan, Uganda agreed to give the United States real-time access to nine of its health data systems for seven years, including the central repository of the nation’s health information and the system managing individual electronic medical records, in exchange for up to US$1.7 billion over five years, a sum that shrinks each year and falls below prior U.S. support. 

Kenya struck a similar deal; Zambia, Zimbabwe and Ghana walked away from the initial terms.

The U.S. government has promised that the data will be aggregated and anonymized, but privacy experts warn that the agreements are vague and omit standard limits on how much data is taken and how it can be used. A Ugandan digital rights lawyer called the choice his country faced the essence of digital colonialism: Accept the deal and risk exploitation, or refuse it and watch people die.

Domestic records collection and foreign data-for-aid deals rest on the same faith that anonymization neutralizes the risk of pooling sensitive health data.

The evidence says otherwise. This does not mean health data should never be gathered or studied, but I believe that the reassurances deserve skepticism, the safeguards deserve scrutiny, and the people whose bodies generated the data deserve a say. To safeguard privacy, a government seeking sensitive medical records should have to show why it needs them and how the safeguards it relies on hold up.

Privacy law was built for a world where data resided in filing cabinets. Governments from Kalamazoo to Kampala now operate in a world where even an anonymized digital record can point back to you.

Jennifer Oliva, JD, is a Professor of Law at Indiana University.

Oliva’s research and teaching interests include health law and policy, privacy law, evidence, torts, and complex litigation. She also serves on the Science & Policy Advisory Council of the National Pain Advocacy Center (NPAC).

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

Are Women Who Use Walking Canes Faking Disability? A UK Columnist Thinks So

By Crystal Lindell

When I was still working full-time in the corporate world, I often had to go to trade conferences where I’d spend 12-hour days walking a show floor the size of multiple football fields.

I have hypermobile Ehlers-Danlos Syndrome and intercostal neuralgia, so even with very strong pain medication, it was often too much for me.

I knew that using a walking aid, like a cane or even an electric scooter, would have made the whole experience easier, but I never used them. I feared rude comments and judgements from all the professional interactions I had slated during my many meetings.

Instead, I suffered through it, barely able to keep myself upright by the end of my travels.

It didn’t have to be that way. I could have used a walking stick, a cane, or a scooter. It was only the very valid fear of social judgment and stigma that kept those tools from me.

Unfortunately, despite the fact that this happened years ago, the repulsion toward young women using mobility aids is still alive and well.

Recently, Kathleen Stock wrote a disparaging column for The Times (UK) titled, "Why are Young Women Using Walking Sticks?" (You can get a pay-wall free link here).

Stock wrote about the “disproportionate number of Gen Z females” using walking sticks or canes to get around. She dismissed it as some kind of pity play by shallow young women who are trying to draw attention.  

“The message sent to onlookers is about a life spent in pain; though what kind of pain, exactly, remains unclear,” Stock wrote. “Rather than it being cruel to say this, in fact, it is cruel not to. We owe it to potentially able-bodied young people to challenge their tendencies to neuroticism and fear; to get them out into the world as functioning adults, wherever that is possible. For their sake, we need to help them ditch the props, and — quite literally — to stand on their own two feet.” 

Stock’s only proof of this is that she has supposedly seen groups of young women “leaning on a walking stick as they edge gingerly along.”  She claimed there were hundreds of TikTok videos instructing people how to live life with mobility aids.

Even taking her assertion at face value, one could be forgiven for assuming Stock may want to explore the very valid causes that could be leading more women to need mobility aids.

Causes like the mass disabling pandemic we’ve been dealing with since 2020, or the fact that climate change is making chronic illness symptoms worse. Or that our healthcare system doesn’t work very well.

But no, Stock doesn’t bother with any of that. Instead, she accuses the women of catching the dreaded virus of "social contagion."

“When you dig into their explanations, a few officially medical-sounding words tend to recur: postural tachycardia, joint hypermobility, fibromyalgia, chronic fatigue,” she writes. “What these syndromes all share is a set of non-specific symptoms, versions of which are familiar to all of us: dizziness, a racing heart, exhaustion, brain fog, muscle pain. And of course, many of these are also symptoms of anxiety, the defining emotion of teenage years.”

I was personally unaware that anxiety could cause things like joint hypermobility, but umm, ok. Let’s see where she goes with this. 

Stock adds, “Could it be, then, that some are taking a cue from internet influencers, overanalyzing normal experiences and talking themselves into a disabled state?”

Why are we even still having this conversion in 2026? Imagine saying that about people who need reading glasses, hearing aids, or wheelchairs.

Even if her assertion is true – that more young women are using walking canes – who cares? It doesn’t impact anyone else at all when someone uses a cane! 

Stock seems to think that using a walking aid will “make you different, special, excused from the pressures of life, pleasingly fussed over by strangers.”

It’s such a gross statement with zero basis in reality.

One day, if she lives long enough, Stock will also need a mobility aid. Then she will immediately find out how much nonsense she was spouting.

As someone who has used various types of mobility aids like crutches and even electric scooters, I can confirm that zero people “pleasantly fuss” over you in such cases. And while you may stand out as “different,” it’s only in the worst possible way. 

Most people still hate having to see anything that reminds them of the frailty of the human body. Some will angrily make you aware of that fact as soon as they see your walking boot.

For its part, the Ehlers-Danlos Society offered a much more eloquent response than I could summon about Stocks’ drivel. They rightly point out how damaging columns like this are in major media publications.

"Every day we hear from people around the world who are challenged for using accessible parking, questioned about their need for mobility aids, told they are too young to be disabled, or have their symptoms dismissed because they do not fit assumptions about what illness or disability should look like,” the society said in a statement. “These experiences contribute to delayed diagnosis, barriers to healthcare, discrimination, and poorer quality of life.”

The bottom line is, whether you need a walking aid, wheelchair or reading glasses, you should be able to use them in peace, without sneering judgement from people like Kathleen Stock.

The Lifesaving Legacy of Dr. Forest Tennant

By Pat Anson

Humanitarian. Philanthropist. Author. Historian. Friend.

Those are some of the words that come to mind when I think of Dr. Forest Tennant, who died Thursday from complications of kidney failure. He was 85.

Here are a few other words that describe him: Real estate investor. Mayor. Professor. Civic Leader. Veteran.

Forest Tennant was many things to many people, but he is best known for his long career as a doctor, which made him one of the world’s leading experts in pain management and substance abuse treatment. His commitment to thousands of chronic pain sufferers – including many who were turned away by other doctors – made Forest a beloved figure in the pain community.

“I will be forever grateful to Dr. Tennant,” says Anne Fuqua, who lives with adhesive arachnoiditis (AA) and other painful conditions. “I wouldn't be here today without the treatment I received from Dr. Tennant. Beyond prescribing opioids, he was able to find the cause for things that other doctors had not and then treat them successfully. Dr. Tennant will always be a hero in my eyes.”

AA is a progressive inflammatory spinal disease that causes severe intractable pain and profound functional decline. Without effective treatment, patients face a lifetime of disability, with very little quality of life.

But thanks to Tennant’s willingness to prescribe opioids and his innovative therapies using hormones and neurosteroids, many AA patients are now able to live happy, productive lives.

In that sense, Tennant really was a lifesaver. Becoming his patient was a seminal moment for AA patients, who often traveled long distances to his small pain clinic in West Covina, California, which Forest and his wife Miriam essentially operated as a charity.  

Forest, Anne and miriam

“It is difficult to fully express our deep gratitude to Dr. Forest Tennant, whose exceptional care saved my son’s life along with many others,” said Ingrid Hollis, who collaborated with Tennant on many projects. “We are profoundly grateful for the hope and healing provided our son at a time when we had exhausted all other options. 

“Over this past decade, his support and expertise were a constant presence in our lives, and we tried to give back by offering him support and guidance in his research and writing endeavors. We will miss his almost daily phone calls to discuss projects and ideas. What a delight and honor this was all these years. Collaborating with him on numerous writing projects and conferences throughout the years was such a privilege and responsibility we didn’t take lightly.”  

Tennant’s compassion for patients turned him into a target. In 2018, he retired from clinical practice after his clinic and home were raided by DEA agents who were suspicious about his prescribing and the distances patients traveled to see him. Tennant was accused of running a “drug trafficking organization” by a rookie DEA investigator, but was never charged with a crime. On the advice of counsel and his doctors, Tennant thought it best to retire.

“It’s hard to continue operating when they never closed my case, and so I’m going to retire and move on,” Tennant said at the time. ““We very much regret this situation as the clinic is filled with patients we consider beloved family and friends.” 

Tennant stopped practicing medicine, but continued his groundbreaking research into AA and other intractable pain conditions. He wrote several books on diverse topics such as Elvis Presley and John F. Kennedy, and was a PNN columnist. Forest and Miriam also redoubled the efforts of their foundation, renaming it Arachnoiditis Hope.

Although he was in poor health over the last few months, Tennant continued to write, appear in podcasts and counsel pain patients, sometimes from his hospital bed.

One of his proudest achievements came a few weeks ago, when he was able to get the first study of a successful arachnoiditis treatment published in a peer-reviewed medical journal. 

Remarkably, Tennant also wrote another book, “Subduing the Inflammation of Adhesive Arachnoidtis: Secret to Relief and Recovery.” The handbook is designed to educate doctors and patients about the benefits of using hormones to restore damaged nerve tissue.  

Even in his final days, Tennant was sharing his knowledge and compassion for the sickest among us.

“This humble physician from Kansas devoted his career to alleviating the pain and suffering of people all over the world (65 countries).  He lovingly answered several hundred emails a month personally. Treating each person as a special individual worthy of respect and the best care and advice he could offer,” the Arachnoiditis Hope staff said in a statement.

“All of us at Arachnoiditis Hope feel privileged to have known and worked with this great man.  Dr. Forest Tennant set an example not only for all of us, but for medical practitioners everywhere to do their utmost best to help relieve the suffering of those in pain in their community.”

‘He Gave Us All Hope’

There are many wonderful tributes online to Forest and Miriam, posted by the patients they helped save.

“He gave us all hope when we could not find it anywhere. When our own doctors either didn’t care or wouldn’t listen, Dr. Tennant gave us a voice. Without Dr. Tennant, many of us would not be alive today, me included,” wrote Denise Domnick-Molohon. “The day he accepted me as his patient was one of the very best days of my entire life.”

“I was one of his patients for about 10 years and he profoundly changed my life. Because of him, I am able to be a very active person again — a social worker with a relatively normal life these days. His care was a miracle to me at a time when it felt like nobody gave a damn if I lived or died,” said Heather Grace. 

“Dr. Forest Tennant was a mentor, my friend, and someone I loved like a grandfather. What I will remember most is that he listened,” wrote Sarah Lewis, a registered nurse who lives with AA. 

“He never dismissed me or made me feel my voice mattered less. He listened, encouraged me to think bigger… But what Forest left me was more than knowledge. He left me ambition. The ambition to keep asking questions, keep challenging old assumptions, and keep pushing until adhesive arachnoiditis is understood in mainstream medicine.”

Forest Tennant was indeed a good listener. He was also non-judgemental, inquisitive and generous to a fault. If it wasn’t for his encouragement and financial support, Pain News Network probably would have stopped publishing years ago. It was a privilege to be called his friend.

Do you have a story to share about Dr. Tennant? Please leave a comment below.

How ‘Toxic Narratives’ Fueled the Opioid Crisis

By Pat Anson

Dr. Lynn Webster has a unique perspective on the opioid crisis. As a pain management expert and prolific researcher, Webster was elected by his peers as president of the American Academy of Pain Medicine (AAPM) and developed the first Opioid Risk Tool, a questionnaire designed to assess a pain sufferer’s risk of opioid abuse.

Like many other doctors involved in pain management, Webster was also named as a defendant in dozens of lawsuits, alleging he was a “key opinion leader” in helping drug companies use deceptive tactics to market opioids – allegations that Webster says are inaccurate and misleading.

All of this happened over a decade ago, but many of the myths about the causes of the opioid crisis still persist today – what Webster calls “toxic narratives.” And they are still harming patients and doctors.

“A toxic narrative is a narrative that, when repeated continuously, can lead to harm. And the example here is that our opioid crisis was entirely due to excessive supply or overprescribing opioids,” Webster explains.

“As a result, the policies that were implemented led to patient abandonment, patients not having access to medicine, and in some cases patients committing suicide or going to the street to get more harmful substances. So it is a narrative that is incomplete, sometimes false, but it takes on such a hold that it leads to harmful outcomes.”

Dr. Webster and co-author Sarah Eichberg, PhD, recently released a new book called “Deconstructing Toxic Narratives: Data, Disparities, and a New Path Forward in the Opioid Crisis.”

As the name suggests, Webster and Eichberg analyze how we got to where we are today, with the pain of millions of patients going untreated, doctors reluctant to prescribe opioids, and an overdose crisis largely fueled by illicit fentanyl and stimulants, not pain medication.

Behind it all is the simple fact that many people who struggle with addiction are trying to escape from a changing and challenging world that doesn’t seem to have a place for them.  

These are complex issues that have been poorly explained by the media, regulators, politicians and litigators – who all latched onto the theme that opioid pain medication was the root cause for soaring rates of addiction and overdoses.

“Everyone wanted a simple answer. And if people want a simple answer, then pharmaceutical companies are a good target and physicians are a good target, and they're pretty identifiable,” Webster told PNN. “As I write in my book, it's easier to say something that is kind of interesting, sexy, and fits a narrative that people want to believe, and then it becomes repeated without any challenge or with very little challenge. It's a simple way to address a very complex problem, which has been harmful.”

Asked to explain who was most responsible for spreading this incomplete narrative, Webster identifies two: the Center for Disease Control and Prevention (CDC), which released its disastrous opioid prescribing guideline in 2016, and Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group that played an influential role in the drafting the CDC guideline.

“The CDC is very much responsible for initiating the narratives. I mean, the head of the CDC said this was a physician-driven crisis exclusively, and then the Surgeon General at the same time basically was focusing on physicians and overprescribing without taking a look at the more complex part of the problem,” says Webster.

“There are other organizations, like PROP, that continued that narrative because it fulfilled their belief. I don't think most of the people in PROP intentionally meant to harm people, but it led to harm because of the incomplete story that their position took.”

‘That’s How You Make Money’

Others with financial interests took advantage of the situation, such as medical device makers and drug companies who hurriedly developed and marketed “non-opioid” pain treatments that were often more expensive and don’t work nearly as well.

“I think it really gets back to a deeper issue, which is free market capitalism and the lack of guardrails, basically free market capitalism. I call it neoliberalism, and that started back in the 1980s, primarily where the incentive is to make money,” said Webster. “The money to be made on finding an alternative to opioids was certainly an incentive to create and help sustain the toxic narrative.

“We've learned that false narratives are reinforcing to the people who want to believe them, and that's how you make money. It is not that we've been able to convey more accurate stories or truth. It is a means by which people can elevate themselves, be promoted, and make money.”

Free market capitalism also extended to the news media, which discovered that the opioid crisis was catnip for readers, viewers and listeners.

“Without a doubt, that's what's happened. There are thousands of examples where people see what was written in the Washington Post, New York Times, Time Magazine, Newsweek, anywhere, and because of the stature of those platforms, people just assume everything that they said has been researched and is accurate. But it's not,” says Webster, who adds that it was common for news organizations to conflate illicit opioids with prescription opioids, without explaining the difference.  

“That was repeated in every publication that talked about this. I cannot think of an exception where they separated the two. And in fact, I remember reviewing a couple of medical journal articles for publications, academic publications, where they did the same thing.”

Webster and Eichberg’s book is deeply researched and fact-based. Chapters explore various aspects of the opioid crisis; from addiction trends, patient stigma, and the criminalization of medicine to socioeconomic factors, childhood trauma, and the CDC’s misclassification of illicit fentanyl.

In effect, they’re trying to set the record straight on decades of incomplete and inaccurate information – and hoping clinicians, researchers, journalists and public health experts will learn from a more nuanced view of the opioid crisis.  

“The way in which we have been addressing it is to look at how to reduce access to drugs. That’s not going to solve the problem. The only way that we can dramatically reduce harm is for us to look upstream, to look at those factors that really contribute to the vulnerability of people,” Webster explained.

“We're at a difficult time, you know. The country is divided politically, and that feeds into almost every topic. We want to be emotionally rewarded for our anger about different things, rather than trying to understand the nuance and the truth behind a topic, and that's very, very much true with regard to addiction and pain treatment.”

When a Pain Flare Steals a Special Day

By Crystal Lindell

Sunday was a boringly normal day for me — as someone who deals with chronic pain on a daily basis. 

When I woke up, it felt like someone had replaced my ligaments with concrete and I was being stabbed in the ribs. I limped to the bathroom. And for breakfast, I had four different pain-relieving drugs and a bottle of water.

After that, I laid back down and slept for another three hours.

I got up just long enough to eat lunch, which of course included a side of more pills. I grabbed my pillow and laid down on the couch in the living room, where I slept for another 2 hours.

It was a pretty routine pre-thunderstorm pain flare for me. Thankfully, I was off work, so I was able to spend the day resting.

The only problem was, Sunday was also my fiancé’s birthday.

He loves me. And he also deals with chronic pain. So he was more than happy to hang out with me on the couch all day while we watched bad 90’s movies.

He was also cool with going to pick up the toilet paper we needed and the Chinese food we got for dinner to celebrate his special day.

But I felt like crap about all of it.

I hate that I spent his entire birthday dealing with a pain flare.

He always does the dishes, and I wanted to do them for him on Sunday to give him a break, but I couldn’t. He also feeds all of the cats first thing every morning, and I wanted to do that for him as well. But again, I couldn’t.

He loves going to play basketball at the court behind our house, but I couldn’t do that with him either.

It sucked. All of it.

Eventually, the thunderstorm came, the pain relieving drugs I was taking started working, and I was able to function a little bit – but by then it was 10 pm and my fiancé was ready for bed.

Part of the issue is that I’m also tapering down on 7-OH in anticipation of the upcoming ban. Before the ban was announced, I was able to take as much 7-OH as I needed on bad pain days.

But these days, I have to use it sparingly, if at all.  The goal is to get off of it before the DEA declares it an illegal Schedule One controlled substance. The only thing worse than losing access to 7-OH would be to also have to go off of it cold turkey.

But that means I’m losing days of my life again to pain. Sometimes, it’s just a random Tuesday that I lose, and it’s no big deal. 

But other times, it’s an “August 9th” that I lose – and then I miss out on a special day.

The Stress of Being Drug Tested by My Own Doctor

By Crystal Lindell

I went for one of my regularly scheduled appointments with my primary care physician yesterday, and as soon as I got there the nurse plopped a urine sample cup and a new drug contract on the table.

I had not been drug tested in a while, and actually started to wonder if they had seen the light and stopped doing them. Alas, that was not the case. 

Drug testing causes stress and anxiety for patients, even when we’re doing everything right. It also erodes the patient-provider relationship and makes it harder to be completely honest with them about our substance use.  

And then they also have the audacity to bill you for the privilege!

The whole thing gives criminal probation vibes so strong, I half expected a police officer to show up and watch me pee.

They also don’t tell you in advance what they are even testing for – or how the results might affect your care. Like, will they immediately cut you off if you test positive for kratom? Are they even testing for kratom?

What happens if you get a false positive? Do you get another chance to take a drug test? And who pays for it?

Asking anything like that in advance only makes you sound super suspicious. 

Mostly they want to make sure you are taking the drugs you are prescribed, but beyond that you have to hope you haven’t accidentally taken anything that could make you fail, like poppy seeds.

Thankfully, I passed. And when the results showed up in MyChart, I saw that they did not test for kratom. 

In addition to testing for stimulants and opioids, they also tested for naloxone and naltrexone – which was strange. Naloxone is used to reverse opioid overdoses, while naltrexone is primarily used to treat alcohol and opioid use disorders. 

It seems odd that they would check to see if either drug was in my urine, and I have no idea how my doctor would respond if they had turned up positive. Would he think I was having issues managing my opioid use? Or perhaps hiding an overdose from him? I really don’t know.

But peeing in the cup is only half the stress. They also have a new patient contract I had to sign, which lists 21 specific conditions for my treatment to continue.

No. 14 reads in part: “I will not ask for early refills. I understand that lost or stolen prescriptions will not be replaced.”

It ends with, “I will report stolen medicines right away to my clinician and to the police. This report does not mean that my stolen medicine(s) will be replaced.”

I was surprised to see that stolen prescriptions might not be replaced. Even with a police report?

That’s very disheartening to read, especially since I recently had my cell phone stolen, so I know how easy it is for a theft to occur.

No. 14 also includes a demand that I keep "my controlled medicines in a safe and secure place, such as a locked cabinet or safe."

No. 18 gives them permission to conduct pill counts: “I authorize my clinician to order counts of my controlled medicines to check that I am taking them properly. I agree to bring in my medicines in their original containers to be counted.”

What if I get robbed on the way to the doctor? What then? I’m just completely screwed for the rest of the month? Am I supposed to travel with my locked cabinet or safe in this hypothetical situation?

Then there’s No. 11, which reads: "I may not use emergency or urgent care visits to get more controlled medicine for my chronic pain. If I do, my clinician may decide to stop prescribing controlled medicines."

Early on in my chronic pain journey, I would often have horrible breakthrough pain that was only resolved when I went to the emergency room. They would give me a shot of Dilaudid to get the pain back under control.

Apparently, I’m no longer allowed to do that. It’s not a huge issue for me these days because my pain is now well controlled and I have learned lots of ways to manage it. But my heart goes out to other pain sufferers who may not be so lucky.

The contract also specifies in No. 8 that, "I will get my controlled medicines from one pharmacy."

God forbid there’s a drug shortage or the pharmacist tells me they’re out-of-stock, an all too common experience. I can’t go to another pharmacy?

I have been with my primary care physician for over a decade now, and we have a relatively strong relationship. So if I ever actually needed exceptions to any of these rules, I would hope that he would be accommodating. But that's a lot of faith to put in a doctor, and it’s not something most patients can count on.

While I understand that opioid hysteria has led a lot of providers to respond with drug tests and patient contracts over the last few years, I think it’s time we got rid of them.

If you actually want to know if your patient is using forbidden substances, or if they aren’t taking all of their prescribed medications, the best solution is the one nobody wants to do: Build a trust-based relationship with them so they feel comfortable telling you themselves!

As it stands, with urine drug screens and intimidating contracts that feel like criminal probation requirements, the only real result is that patients will see their doctors as cops. And everyone knows you never, ever talk to cops. 

Chronic Pain Can Happen to Anyone

By Crystal Lindell

There’s this thing about chronic pain that people without it like to ignore: It could happen to anyone.

When you’re still healthy, the very concept of “pain that never ends” feels impossible.

Unfortunately, not only is it possible, it’s likely.

Between injuries, illness, genetics and bad luck, you never know how long you’ll have your health. You could be in a car accident tomorrow that permanently damages your back. You could get cancer and the treatment permanently damages your nerves. You could fall off your bike. Stumble on a Lego. Slip on some ice. 

Suddenly, the body you thought you could count on doesn’t function like it used to. You can’t do the activities you once did, you have no energy, and the medical bills are piling up. Even the concept of time feels different because you’ve lost your stamina and simple tasks take forever.

In an instant, you could lose your job, your social life, and even your personality.  

People spend decades trying to prevent such fates. They eat healthy, stay active, take vitamins, practice yoga -- all in an attempt to avoid the inevitable.  

Perhaps some of those efforts would be better spent making the world a better place for people living with chronic pain or chronic illness. After all, if you know it will likely happen to you, shouldn’t you prepare for the day you will join them?

There are so many ways society could better serve people with chronic pain and illness.

There’s the obvious ones, like universal healthcare and universal basic income. But there are also the things you don’t even notice when you’re still healthy. Things like a better public transit system for when you’re in too much pain to drive. Or government funded food delivery programs for when you’re in too much pain to cook.

There’s also the fight for better pain care. Access to opioid medication or even 7-OH might sound frivolous today, when you’re still walking around in a healthy body. But one day, when you need them, you’ll regret that it took so long for you to care.

I understand why people live in denial about their body’s eventual decline. It’s much easier to get through the day that way. But if you take the time to care about things like affordable healthcare and disability rights today, it will be that much easier to get through your painful tomorrows.

We should be building a world that plans for our bodies to age and get injured, instead of building a world around denial of that fact. It’s only when we truly accept our fate, that we can actually make our lives better.

Banning 7-OH Will Ruin My Life

 By Crystal Lindell

When I got the news that 7-OH will likely be illegal in the United States within the next month, I was on a break at the new job I was able to get because of 7-OH.

I opened my texts to see a message from PNN editor Pat Anson:

7-OH to be banned nationwide in early August according to DEA filings.”

He’s always been great at breaking news. 

When I saw the words though, I wanted to throw up. I started shaking and was overcome by a cold sweat. Then I fought back tears because I had to get back to work.  

I had to get over the shock and dissociate to get through the rest of my shift at the gas station where I work. I spent the next few hours legally selling customers cigarettes, beer, and lottery tickets. 

Then I went into my car and cried.  

7-OH has truly been a life-changing drug for me and many people I know and love.

I have intercostal neuralgia, which is nerve damage in my ribs. When you have the same thing in your face it’s called trigeminal neuralgia – which is colloquially called the “suicide disease” because so many people who have it kill themselves or want to.

As someone with the intercostal variety, I’m here to tell you that having that kind of pain in your ribs doesn’t make it any less horrible. I have long considered suicide as a potential treatment option.

For many years I was able to find some semblance of stability with a cocktail of opioid and OTC pain medications. I know how lucky I am to be among those who can still get an opioid prescription. But while the opioids have kept the suicidal-level pain at bay, they have never allowed me to actually live.

7-OH does that.

It’s not an exaggeration to say that it has given me my life back. It’s been even more effective than hydrocodone or morphine for me. It instantly treats my pain while also combating fatigue. 

Losing access to 7-OH will be devastating for me. 

I am worried I will no longer be able to work full-time, and that I will then lose the health insurance I only just got. Without work and insurance, I will be back to living below the poverty line, and relying on food pantries. 

But none of that has anything to do with why I think 7-OH should remain legal.

7-OH should remain legal because – as an adult – I should have the legal right to put whatever I want into my own body, and it is no one else’s business how I do that.

That’s it. That’s the only reason needed. Anything else is irrelevant.

This is a bodily autonomy issue. I should be the only one who controls my own body, especially my own medical decisions. 

Not to mention the fact that nicotine and alcohol are legal despite the fact that they are both very addictive and sometimes deadly. Why single 7-OH out? Especially considering how safe it is in comparison to those drugs. 

AKA Betrayal

What’s worse is the outright glee from some leaf kratom advocates, who think banning 7-OH will somehow let them be seen as the golden child.

I feel so betrayed by them. The American Kratom Association in particular pushed for this and they have made a deal with the devil. When 7-OH is banned nationwide, it’s likely that leaf kratom is next. It’s already happened in several states.

I will never again use a single kratom product from any of the companies that support the AKA.

For now, I plan to taper down and hopefully get off 7-OH without going into withdrawal. And I am going to look into different substances that may give me a similar effect. 

I’m also hopeful that the 7-OH manufacturers are working on new formulations of kratom alkaloids that will still be available after the ban. 

And I am clinging to the 1% chance that the DEA backtracks on this, as they did in 2016, after initially announcing plans to make mitragynine and 7-hydroxymitragynine illegal Schedule One drugs. 

I know we cannot count on that though.

Honestly, writing this column feels futile. I know it won’t do anything to stop the ban on 7-OH from coming. But I do feel it’s important to at least create a record of my objections. 

I want it plainly stated that a ban on 7-OH will be detrimental to my life, and to the lives of thousands of others who have found relief from this drug.

But how do I convince people to care about my life? Why do I even have to do so? Shouldn’t caring about other people’s well-being be something that comes naturally?

It’s degrading that I have to beg the world for pain relief. That I have to plead for a medication that allows me to live my life, work a job, care for my cats, love my fiancé, and aid my elderly relatives.

It disgusts and depresses me that we live in a country that would deny me those things.

Chronic Pain Made Kathie Lee Gifford Suicidal

By Crystal Lindell

Kathie Lee Gifford has revealed to People that while struggling with chronic pain, she wanted to die.

The retired singer and talk show host told the magazine that she remembers praying: "Lord, if this is all you have left for me, I want to go home.”

“I wanted to die a few times. I wasn't going to hurt myself. I wasn't going to kill myself. I just didn't want to be here — as blessed as I am," she said.

The 72-year old Gifford struggled with chronic pain due to a slew of health issues over the last couple years, including a total hip replacement. 

After that procedure, she then had to have another surgery after she fractured her hip again trying to play with her grandchildren.

There’s more. Gifford also broke her arm after rolling over it awkwardly one night. She had yet another bone break when she fell on uneven pavement. Then she realized her depth perception was off, so she had cataract surgery on her eyes.

Based on the types of injuries she had — including multiple broken bones — it sounds like she may have been struggling with accepting her aging body’s limitations.

It is crushing to realize that as our bodies age and deteriorate, we can’t do all the things we used to do when we were healthy.

Gifford said her pain made her self-isolate by staying home more, which made her remember something her late husband, NFL and broadcasting legend Frank Gifford, said before he died at age 84 in 2015.

"Frank said to me before he passed, 'When I go somewhere, I know what people are expecting from me. I want to be Frank Gifford when I go out,'" she recalled. "I want to be Kathie Lee, the person they expect. I don't want to disappoint people. But when you're in pain, it's so debilitating, and everything's a grimace.”

Indeed, as many chronic pain patients can relate, pain will turn you into a different person. It will  chip away at your personality, and all the things that you assumed made you who you were. Deciding it’s easier to just stay home and isolate themselves is an all too common reaction. 

“I've had emotional pain many times in my life, but never this chronic physical pain where you literally want to go home to Jesus," Gifford said about her darkest days.

That comparison of emotional pain to physical pain was especially interesting to read, and something I have definitely thought myself multiple times over the years. There is something about never ending physical pain that will make suicide feel almost welcome.

The way Gifford described her suicidal thoughts as a desire to “go home to Jesus” makes it seem like she gave it serious thought.

Gifford also talked about how chronic pain impacted her ability to be a grandmother, after she welcomed five grandchildren in three years.

"I couldn't carry them, I couldn't love on them, I couldn't run and play with them," she explained. "All I could do was sit there and sing and write silly songs with them."

As a chronic pain sufferer myself, it’s validating to hear that even the rich and famous are no match for the absolute hell that comes with daily pain.

You would think that having a net worth of tens of millions of dollars, as well as access to any treatment possible, would be enough to insulate them. But chronic pain will humble anyone it touches.

Gifford did say she was doing better these days, thanks to her surgeries, 6 days-a-week physical therapy, and stem cell therapy. She’s now able to run "all over the place" with her grandkids.

"They're all fantastic," she says. "I'm hoping, Lord willing, that I have many, many years with them."

Of course, many of us don’t have access to things like stem cells, physical therapy, or joint replacement surgery. Aside from how expensive all of those things are, they also require the ability to take time off work and lots of support from loved ones.

That’s why it is so inhumane for doctors and the government to withhold the one inexpensive treatment that works for many of us: opioids.  

Part of the thought process for refusing to prescribe opioids is basically that pain patients should just suck it up and deal with their pain. But even rich and famous celebrities -- with all the advantages in the world -- struggle with chronic pain.

We need to remember that chronic pain can have life-threatening consequences to our health, and it should be treated with the same urgency as heart disease, cancer or any other potentially fatal condition. 

Gifford is fortunate that she didn’t succumb to suicidal thoughts, but she also had endless resources to help her through it. The rest of us are not so lucky. Which is why we need access to treatments that actually work. 

3 Tips for Surviving Summer Heat with Chronic Pain

By Crystal Lindell

While the official summer season started June 21, here in northern Illinois it has definitely felt like summer for almost three months already.

And with summer weather comes lots of heat, humidity, and thunderstorms – all of which can be tough to deal with when you live with chronic pain.

But there are some things you can do that make surviving the hottest months of the year a little more bearable, even if your body is doing its best to make your life miserable.

1. Learn How Weather Impacts You

I can always feel when a summer thunderstorm is coming. All of my joints hurt more, and the intercostal neuralgia pain in my ribs becomes so intense that it’s difficult for me to stay upright. 

But then, when the rain finally falls, there’s a relief that often envelops my body, as though the swelling is being released.

One thing I have noticed is that when I talk to fellow chronic pain sufferers, many of them don’t even realize that their pain is flaring because storms are coming. The flare may begin when the sky is bright and clear, and the storm itself is still a few hours away.

Learning how weather impacts your body can be very helpful when it comes to predicting and navigating flare ups. Try keeping a diary, either digitally or on paper, of your pain flares. Then compare local weather patterns to the flares to see if they are storm-related. You can look up past weather patterns for your area on Weather Underground

When you get really confident in the patterns, you can start to look at the weekly weather forecast as a sort-of pain forecast, which can then help you better plan out your commitments. 

For example, perhaps you’ll schedule your lunch with friends when you know it’s not going to rain for a few days. Or you can reschedule your dentist appointment if you see a storm coming.

2. Embrace Rest on Sunny Days

I’m not sure how things go in the rest of the country, but here in the Midwest everyone feels the need to be as active as possible whenever the weather heats up. It’s because we spend most of the year dealing with freezing temperatures and snow.

There’s a Midwest guilt that comes over us if we ever feel like we are wasting a good weather day. It’s like we are worried that if we don’t show enough appreciation for 80 degrees, we’ll face the punishment of an early winter.

When you have chronic pain though, summer can be especially difficult to deal with. Changes in pressure and humidity can cause inflammation and increased pain, while the heat can be more difficult to tolerate.

So, even if it’s sunny outside, try to remember that rest is both helpful and necessary. It’s good to “waste” a sunny day inside with air conditioning, if that’s what you need to feel your best. 

3. Wear Compression Socks

Personally, I’m a fan of compression socks all year round, but when the temperatures get past about 75 degrees Fahrenheit, they become a staple in my outfits.

Heat is one of the main causes of fluid buildup in your ankles, which in turn causes swelling. It’s more likely to happen if you have certain health conditions, or take medications like gabapentin and NSAIDs.

Compression socks can make a world of difference, by reducing the amount of swelling you’ll experience on the days when you need to be on your feet more or when it’s just especially hot outside.

Plus, keeping your foot and ankle swelling down with compression socks also makes the recovery cycle easier to get ahead of. The less swelling you have, the faster it will go away.

Summertime isn’t always a day at the beach for chronic pain patients, but with a little bit of planning and a few accommodations, it can still offer lots of fun!

What tips do you use to survive the hot summer months? Is your pain better or worse when the weather heats up? We’d love to hear from you in the comments below!

You Don’t Really Know What Chronic Pain Is Like Until You Have It

By Crystal Lindell

I was recently talking to two people who asked me about various pain treatments. One was an older woman and the other was a young man. 

When I mentioned kratom – because I could tell that at least one of them was desperate for help – they had two very different reactions. 

One was receptive, while the other was adamantly against it. But it may not be the ones you’d expect.The older woman immediately wanted to know more, while the young man – the much more stereotypical kratom user – was immediately against the idea.

And from their reactions, I could immediately discern which of the two was actually suffering from chronic pain – the older woman.

Because when you have pain that never goes away, you will try anything to find relief. It’s one of the many truths I have come to learn first-hand as a long-time chronic pain sufferer myself.

In fact, there is a lot about living with chronic pain that’s difficult to understand unless you have been through it.

The way it wears you down and damages every aspect of your life. How expensive it is. How much it impacts your relationships.

The special type of despair that comes from the fear that you might never get better.

I have learned just how hard it is for someone with chronic pain just to get out of bed everyday. How much of an accomplishment that is.  

I know that my fellow chronic pain sufferers have likely struggled with doctors and pharmacists and health insurance companies. That they have tried every medication and treatment they could access. And that they have probably contemplated even the most extreme “solution.”

I know that they probably never feel truly rested, because of the way chronic pain even infects your sacred sleep.

And I know what it’s like when loved ones become much less helpful, as they have to keep helping you into eternity. How quickly they lose patience with the situation. 

Or, as French author and chronic pain sufferer Alphonse Daudet once wrote, "Pain is always new to the sufferer, but loses its originality for those around him.”

There’s a bond that comes from the unique experience of shared suffering. A special level of empathy. Which is why I have such a special place in my heart for anyone else enduring chronic pain. 

But it’s nearly impossible to fully grasp life with chronic pain from the outside. 

My theory is that our brains are not set up to process even the concept of chronic pain in the abstract, because recognizing that it could happen to us would be too devastating to accept.

People who have had acute pain, from an injury, accident or surgery, might assume they know what it would be like. But they can only understand so much.

A lot of people like to pretend that if they had chronic pain, they would somehow manage it better than you can. 

They’d yoga their way out of it, or simply go to a chiropractor. They’d be more stoic, and less tired. They would never get frustrated, and they would still do all the activities they did before the chronic pain started.

They’d be wrong though.

You never know how you’ll actually handle chronic pain until you’re enduring it. It has a way of humbling you faster than you expect. Opening you up to trying treatments you thought you’d never consider, like kratom. 

In the end, none of us are as strong as we like to pretend we are. But when we are forced to confront our own weaknesses, we do have the opportunity to see just how strong others have been the whole time.

Doctor, the Patient Will See You Now

By Julie Titone

Have you ever gone to an appointment with a new doctor, hoping to meet Patch Adams, the true story of a compassionate and funny doctor played by the late Robin Williams in a 1998 movie?

Instead of Dr. Adams, you find Dr. Doom waiting in the exam room. 

My experience hasn’t been that extreme, but there are certainly physicians I wouldn’t recommend. Or revisit.

I say this in the wake of my annual checkup with a primary care doc who cheerfully answered my inevitable list of questions. She remembered that my mom is 102, and suggested I may have another 30 years ahead (oy). 

After four years, she knows me. When I asked if she would continue being my doctor as I age, she said, “I’m not going anywhere.” 

Good to know! Because finding and adjusting to a new healthcare provider can be fraught.

In fact, among those of us with adhesive arachnoiditis, there are few hotter topics than where to find someone willing to treat our chronic, uncommon and often debilitating form of spinal nerve damage. One man told me that a new doctor literally backed out of the exam room upon seeing the arachnoiditis diagnosis on his chart.

I’ve come to think of office visits as stage plays. The opening act —  that first appointment – features two characters who are wary of each other. 

Let’s say the patient has been disappointed by previous doctors and is worried about the cost of treatment. Her emotions are rubbed raw by unrelieved pain. On top of all that, she has little trust in what my pain specialist calls, with an ironic eye roll, “our health care system.” (One study determined that, from 2020 to 2024, public trust in doctors and hospitals plummeted from 71 to 40 percent.)

The doctor, meanwhile, has dealt with all manner of personalities and diagnoses that day, and has no idea what awaits behind the exam room door. He hasn’t had sufficient time to even read the patient’s lengthy chart because he was busy dealing with insurance companies, on top of a packed schedule.

There may be too much ego or too few communication skills present in an exam room. A doctor’s deep experience – in general, a good thing – can get in the way of seeing a patient as an individual who might differ significantly from previous patients with similar symptoms. 

I once saw a doctor who clearly was brilliant. She bombarded me with questions, but then didn’t give me time to properly answer them.

I do see improvement in doctors’ acceptance of patients who have done their own health research. We’ve come a long way since about 20 years ago, when I asked an informed question of a doctor who responded, “Oh, you’re one of those internet people.” 

In the case of rare diseases, patients are quite likely to know more about their condition than the physician does. That should be a chance for mutual problem solving, not wisecracks about Dr. Google.

Sure, there are genuine cases of “cyberchondria.” Some people are bound to misdiagnose themselves and catastrophize. But that seems like a lesser problem than having people show up at clinics totally uneducated on matters of health.

If I were a physician, I might relish the challenging cases. But I’m not sure I would have the emotional stamina that the job requires, especially if it involved seeing people in pain, day in and day out. Simply dealing with an endless parade of suffering humans could be taxing.

Let’s hope there are always doctors who get enough satisfaction out of helping people, so that they’re willing to put up with the downsides and stick with the profession. We need them.

Julie Titone is a journalist who frequently writes about health issues. Find her work at julietitone.substack.com/.