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/. 

Millions of Americans Go Uninsured After ACA Subsidies Cut

By Andrew Jones, Kaiser Health News

Year after year, Ross and Rebecca Tobiassen saw their healthcare costs rise, having relied on the Affordable Care Act (ACA) for federally subsidized health insurance since its start in 2014. Year after year, the couple in western North Carolina kept their coverage, believing the peace of mind was worth the cost.

But in December, that changed. The Tobiassens decided to cancel their insurance when Rebecca saw the cost of their monthly premiums would jump from $130 to more than $550.

“It makes no sense,” she said. “It’s not worth it anymore.”

The couple own and are the only employees of a small auto shop just west of Appalachian State University in the North Carolina mountains.

Rebecca worries about her husband, whose work as a mechanic can be dangerous. A spring once shot a metal ball joint into their garage wall like a gun. A heavy object crushed Ross’ thumb.

In 2020, Ross became mostly blind in one eye after repeatedly getting metal shards in it and developing an infection in his cornea.

The Tobiassens are among the Americans who canceled their ACA coverage after Congress allowed enhanced tax credits that helped pay for insurance plans to expire at the end of 2025.

Rebecca and ross Tobiassen

The Tobiassens benefited from those tax credits — like millions of other enrollees expected to drop or be dropped from their coverage as the year progresses, unable to keep up with the higher costs.

Established by the Biden administration’s American Rescue Plan Act during the covid pandemic, the expanded subsidies reduced monthly premiums for many families and prompted a tidal wave of new sign-ups, doubling ACA enrollment to about 24 million.

The Centers for Medicare & Medicaid Services is expected to soon release complete data on how many people are no longer covered under the ACA, but an early analysis from KFF, citing Wakely Consulting Group research, showed enrollment could drop from over 22 million at the end of 2025 to as low as 16.5 million in 2026. 

In North Carolina, individual ACA sign-ups for 2026 were down 22% compared with the year before, a greater drop than any other state, amounting to a decrease of more than 213,000 people, according to enrollment data. While the Tobiassens’ two teenage daughters remain on Medicaid, Rebecca said the new prices showed that the federal government doesn’t care about families like hers.

“We’ve known that you don’t care about us,” she said, “but you’re making it plain and simple now.”

The couple’s insurance hadn’t helped them cover all their medical needs. When the pain from Ross’ eye infection worsened five years ago, Rebecca insisted he go to a specialist, who told them that fixing the eye through cornea replacement surgery would cost them up to $30,000 and require Ross to take six months off.

Ross chose a less expensive treatment to kill nerves in the eye instead.

The couple know they’re taking a risk by not being insured. If something were to happen, they could face an enormous medical bill.

Ross, 47, said the blindness in the one eye doesn’t significantly affect his job. He works long hours, sometimes into the night to keep up with demand.

“I try not to think about it too much,” he said. “I just work.”

‘Don’t Get Hurt. Don’t Get Sick’

Katie Alexander oversees volunteers for Pisgah Legal Services, a western North Carolina nonprofit that helps low-income people secure health insurance. Alexander has helped North Carolina and Tennessee residents try to get ACA marketplace plans since Obamacare’s launch. She said she’s never seen anything like this year. 

Nearly 100 Pisgah clients, out of about 700 that Alexander’s team worked with during open enrollment, decided to drop insurance this year, and many others chose cheaper ACA plans with less coverage, Alexander said. 

Alexander said the people who have dropped their coverage include Lyft and Uber drivers. They’re trying to start their own businesses. They are artists and people who can work only part-time, because they’re chronically ill. Some are unable to get insurance through their employers, or they make too much to be on Medicaid.

“Even for folks who don’t have chronic illnesses,” Alexander said, “there’s just this nagging at the back of your mind, kind of constantly, of: ‘Don’t get hurt. Don’t get sick. Because you can’t afford that.’”

ACA premiums and deductibles steadily increased for years starting in 2022, then spiked during the enrollment period for 2026 plans, according to data analyzed by KFF. The Tobiassens have seen every dip and rise in plan costs since 2014 when the plans launched. They joined immediately and paid about $30 a month, Rebecca Tobiassen said.  

“You actually felt like you were benefiting,” she said.

But through the years as the marketplace became more expensive, the couple made concessions, switching at one point from a silver plan — historically the most popular — to a bronze. The plan mostly provided for the couple’s basic needs.

As they saw their deductibles and premiums rise over more than a decade, Rebecca feared the day would come when they could no longer afford even the cheapest plan.

“Plans are unaffordable, no matter how you cut it,” said Risha Gidwani, a healthcare policy researcher at the University of Colorado Anschutz School of Medicine. “It’s just who is shouldering the unaffordability.” 

Gidwani and health economist Cheryl Damberg, in a study published earlier this year, found that most bronze plans, the cheapest ACA options for many, would be unaffordable without subsidies for the average person using the federal healthcare coverage.

Without subsidies, many families using these plans don’t make enough to afford premiums or deductibles, Gidwani’s research shows.

People who drop health insurance also change what’s known as the “risk pool,” Gidwani said, when a group of people share financial hazards. 

If healthier people drop out of the risk pool, fewer people subsidize the people who get sick, Gidwani said. That means premiums for the people who get sick will increase again in the future, she added.

“That becomes what we call a death spiral,” Gidwani said.

Even if the subsidies hadn’t expired, taxpayers would have borne an estimated $350 billion burden over the next decade to cover them, Gidwani’s study noted.

After dropping coverage they’d relied on for 11 years, the Tobiassens have no plans to return to the ACA marketplace. They looked into alternative options through a faith-based healthcare organization but decided to go without.

For now, they don’t have a plan B. They’ve set aside some money for a medical emergency. And if their savings run out, Rebecca Tobiassen said, they have a couple of last resorts to lean on: credit cards or family members.

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

I Hate When Doctors Insist on Physical Therapy for Chronic Pain

By Crystal Lindell

There is definitely an over-prescription crisis in this country, but it’s not about pills – it’s physical therapy referrals. 

While many doctors see it as an “easy” way to reduce their opioid prescribing, the only thing easy about it is how easy it is for them to write the referral and then immediately blame the patient for any lack of progress. 

In fact, I recently stumbled onto a discussion about physical therapy in the “Family Medicine” subreddit, where medical professionals, who’ve confirmed their credentials, were discussing just how much they love to push PT on patients and why. 

In the thread, a poster who claims to be a new physical therapist asked providers when they typically will prescribe it. 

A nurse practitioner responded with, "I only prescribe PT on days that end with Y." 

A physician's assistant said they prescribe physical therapy "as soon as [patients] open the door."

A medical doctor lamented, "I wish my patients took [physical therapy] more seriously because recovery for a lot of [musculoskeletal] and chronic pain takes work and they want the one shot fix."

Ironically, it really seems that it’s the doctors who are looking for a one-shot fix with their physical therapy referrals. As another doctor on the thread admits, they prescribe PT "for any pain, gait, chronic respiratory, chronic pulmonary, or weakness complaints."

As a long-time pain patient, the thread confirmed everything I assumed doctors thought about pain patients and physical therapy. But unless you’re recovering from a specific injury, like a bone break or surgery, physical therapy can be a huge waste of time and money. 

For patients, the reality is that physical therapy is a massive time commitment and a huge financial expense.

Way back before I even developed intercostal neuralgia in my ribs, I started having pain in my wrists, likely caused by years of undiagnosed Ehlers Danlos syndrome and typing for a living. The official diagnosis for me at the time was “tendonitis.”

As someone who writes for work, dealing with sudden wrist pain was causing me massive issues. There were days when the pain was so intense that I couldn’t even type up a column.

I was also younger and more naïve then, so at the time my only goal was to do everything my doctor told me to do. I genuinely believed that that was my best chance at getting better, and that he had my best interest at heart. 

So when he told me to take Advil and go to physical therapy three times a week, I happily agreed.

The only issue was that I had to miss a ton of work, use a bunch of gas to get to the appointments, pay for parking, and then also come up with the $30-per-session co-pay, which added up to almost $100 a week! Times that by four weeks, and suddenly you’re looking at a car payment, easy.

God forbid, you have a job where you can’t get time off during the limited business hours offered by physical therapists. Plus, there’s the issue of finding a babysitter if you have kids.

Maybe that’s not a lot of money to doctors, but to many patients it’s enough to put you into crushing debt and maybe even lead to you losing your job for missing too much work.

The worst part was that physical therapy did almost nothing to relieve my pain. The appointments themselves mostly consisted of the therapist massaging my wrists, which only helped in the moment. In truth, the most effective part was the wrist braces they gave me to sleep in, something my primary care doctor could have easily given me himself.

Many doctors seem to think that if a patient is “really” in pain, they will try anything to get better. And thus, if a patient is reluctant to spend a bunch of time and money on physical therapy, then the only logical conclusion is that they must be a drug-seeking junkie looking to get high.

But there’s a reason that pain medication, especially opioids, are so popular. They are known to be immediately effective, and they are very cheap compared to physical therapy. Plus, instead of forcing you to miss work, they actually allow you to go to work despite the pain.

Looking back, I do not think that I needed opioid medication for my wrist pain, so I’m not arguing for that. I’m just saying that I also did not need physical therapy. But, like many of the doctors on that Reddit thread, my physician had gotten into the habit of prescribing PT for almost anything. 

Unfortunately, that would not be the last time a doctor tried to push physical therapy onto me. It happened to me and my loved ones many times over the years. While I have seen it work for family members who had just had a major operation or an acute injury, I have rarely seen it help much with chronic pain.

Of course, there are certainly patients who have benefited from it, and physical therapy should definitely be an “easy” option for them. Unfortunately, insurance coverage of PT is often limited. My fiancé can’t get insurance to cover any more physical therapy for him, despite the fact that he does find the sessions to be beneficial for his chronic pain.

In essence, doctors will happily prescribe physical therapy, but that’s about where their concern ends. After that, you need to figure out the health insurance requirements, assuming you even have insurance. Then you have to come up with co-pays, transportation, time off work, potential babysitters, and the energy to go to PT appointments while also maintaining the rest of your responsibilities. 

That last one is something doctors often fail to consider. If you’re working one or more jobs, running a household, and trying to get through the week, adding in the time and emotional energy to go to physical therapy a few times a week can be almost impossible.

In short, there’s a long list of negative side effects that come with physical therapy. They start with the referral by your doctor. Physical therapy should not be used by them as a secret test that patients have to pass just to prove they’re not trying to score some hydrocodone. It also shouldn’t be used as a first-line treatment for patients who may greatly benefit from other treatments.

There were a couple people on that Reddit thread attempting to stick up for patients. One doctor said this: 

"To be fair, it's financially out of reach for many (most of my) patients. My low income patients can get 4 visits/year but finding a PT who can provide the low income service can be challenging. These same patients are getting a maximum income support of $1787/month (a 700 square foot basement apartment rents for about $1500/mo right now in our city, if you can find one).

Sometimes people don't make bad choices, they fail to have good choices to make."

The only problem with that response is that it still assumes that physical therapy is a “good” choice. As a patient, I’m not convinced that it is. In fact, sometimes it’s a bad one. 

How Chronic Pain Kills Your Independence

By Crystal Lindell

There’s a myth that I heard a lot as a little girl. That when I grow up and become a woman, the ultimate goal should be full independence.

Or as Destiny's Child famously sang in their 2000 anthem, Independent Woman: "I depend on me / All the women, who independent / Throw your hands up at me.”

But if you have a chronic illness or chronic pain, the reality is actually: I depend on me… and my fiancé, my mom, my grandma, my siblings, and my friends.

I have Ehlers-Danlos Syndrome (EDS). It’s a connective tissue disorder that I was born with, although I was not officially diagnosed until 2018. The only reason I was diagnosed then was because five years earlier, in 2013, I developed debilitating pain in my right ribs that would later be labeled by doctors as intercostal neuralgia.

Despite living most of my life without a diagnosis, the EDS has always been there, impacting my life. I just didn’t know that it was the cause of my clumsiness — and the countless injuries, sprained ankles, and crushing fatigue.

I remember when the symptoms made my life feel impossible to handle. Like the time I sprained my ankle in college. I remember going home after a long day of hobbling on crutches around campus, and having to drag myself up a flight of stairs to my walk-up studio. 

When I finally got into bed, I remember crying myself to sleep in pain and frustration, just begging the universe for help. 

These days, I recently started working outside the home again, a cashier job at a local gas station. Because of my chronic pain, there’s absolutely no way I could manage my life independently while also working there. I need help to pull it off.

My fiancé handles so many of the day-to-day tasks required to keep me functioning. Without him doing laundry, washing dishes, cleaning the bathroom, feeding the cats, cleaning the litter boxes, doing yard work, and countless other chores, I would never have enough energy to do  my job and handle the rest of my life.

At the end of the day, we all need people like that. And when you have a chronic illness or chronic pain, you need them even more urgently.  

I don’t even get to pretend I live an independent life. A dependent life was forced on me by my broken body. 

Over the years, I have come to realize that the ultimate goal is not independence. The ultimate goal is surrounding yourself with people who you can trust to help take care of you -- and who you love enough to take care of in return.

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.