Managing Expectations Is Often Key to Chronic Pain Treatment

By Chris Seenan

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

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

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

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

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

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

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

Recognising Relief

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

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

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

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

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

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

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

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

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

Poor Communication Hinders Treatment 

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

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

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

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

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

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

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

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

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

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

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

By Crystal Lindell

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

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

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

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

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

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

SAM NELSON

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

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

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

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

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

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

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

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

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

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

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

We Need To Talk About Suicide Risk From Untreated Chronic Pain

By Neen Monty

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

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

Why is this being ignored? Swept under the rug?

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

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

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

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

• 0.017% to 0.256% per year

• Around 0.014% annually at lower doses

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

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

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

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

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

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

Studies suggest:

• 5–14% of chronic pain patients attempt suicide

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

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

Take a good look.

It’s not 0.014 percent. Or 0.25 percent.

It’s five to fourteen percent.

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

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

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

But uncontrolled pain is devastating. It destroys lives.

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

Uncontrolled pain causes:

• hopelessness

• isolation

• sleep deprivation

• loss of identity

• financial collapse

• disability

• relationship breakdown

• depression

• fear of the future

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

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

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

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

No one.

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

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

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

Because severe, relentless pain changes human psychology.

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

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

For years? Or decades?

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

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

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

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

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

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

It makes no sense, not logically, not medically.

But it is true.

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

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

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

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

But the pain does not disappear.

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

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

Imagine applying that logic anywhere else in medicine.

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

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

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

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

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

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

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

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

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

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

It is ideology.

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

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

But untreated and undertreated pain is doing harm.

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

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

An earlier death.

One that happens quieter.

One that is easier to ignore.

One that can be separated from lack of treatment.

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

One that leaves no scandalous headline.

One that policymakers do not have to feel responsible for.

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

So only one becomes politically inconvenient.

Neen Monty is a patient advocate in Australia who lives with rheumatoid arthritis and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a progressive neurological disease that attacks the nerves.

Neen is dedicated to challenging misinformation and promoting access to safe, effective pain relief. For more information on chronic pain, the science, the politics and the lived experience, got to Pain Patient Advocacy Australia. You can also subscribe to Neen’s free newsletter on Substack, “Arthritic Chick on Chronic Pain.”

Why Chronic Pain Patients Often Pretend to Be Healthy

By Crystal Lindell

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

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

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

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

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

But it’s fun while it lasts.

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

I’m TOTALLY HEALTHY!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Downside to Powering Through Pain

By Crystal Lindell

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

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

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

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

I was swimming in wins after I took it.

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

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

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

I am also completely exhausted.

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

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

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

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

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

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

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

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

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

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

How to Dress When You Go to the Doctor

By Crystal Lindell

I always wear mascara when I go to the doctor. 

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

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

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

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

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

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

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

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

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

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

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

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

EDS Means a Life Filled With Ankle Sprains

By Crystal Lindell

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

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

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

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

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

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

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

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

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

I genuinely thought that I was an idiot.

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

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

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

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

“Ummm. Yes!  How did you know?”

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

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

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

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

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

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

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

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

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

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

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

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

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

Ohio Nursing Homes Dump Patients at Homeless Shelters

By Crystal Lindell

A woman at a Columbus, Ohio nursing home who was suffering from a painful leg fracture, diabetes, and other health problems was dumped by the staff at a homeless shelter because she drank a beer in her room.

That’s according to a 2023 inspector’s report by the Centers for Medicare and Medicaid Services (CMS), which found other disturbing incidents of Ohio nursing homes discharging older and medically fragile residents to homeless shelters.  

The Columbus nursing home, Eastland Rehabilitation and Nursing Center, told CMS it tried to get the woman into a rehabilitation program for substance use but they couldn’t find a bed. 

At the time of her discharge, she was using a walker, incontinent, and carrying a large bag of medications, according to a news report from Ohio-based Signal. 

And the story only gets worse.

The nursing home staff didn’t even bother to call the homeless shelter ahead of time to let them know that they were dropping her off. So when they left her at the homeless shelter, staff there initially refused to take her in “leaving her outside in the late-summer heat." They said they had their own 100-person-long waiting list.

According to the CMS inspector, “The [homeless shelter] staff member revealed Resident #83 was unclear of what was going on, scared, and not sure who dropped her off there.”

Eventually the homeless shelter let her into the lobby, gave her a glass of cold water and allowed her to come inside, while they called the fire department and a social worker. 

But after that, her story just… ends. None of the people involved have since been able to track her down. Administrators at Eastland did not return phone calls about the incident, according to the Signal. 

It’s a truly disgusting tale. And anyone who deals with chronic pain or other health issues should sympathize with the woman.

Medicare gives Eastland just two out of five stars in its nursing home ratings system, which is considered below average. The facility, which gets only one star for “health inspections” and “staffing,” has been fined four times over the last few years for over $300,000. 

It’s not a one-off situation either. CMS has faulted Eastland and six other Ohio nursing homes in the last few years for discharging residents to homeless shelters.

“We are starting to deal with it more and more. The facilities are so closely monitored on discharges, but yet they still try and send them to hospitals and not take them back. Or drop them off at homeless shelters,” Chip Wilkins, who heads Dayton’s Long Term Care Ombudsman program, told the Signal. 

It’s inhumane and upsetting that the only consequences the nursing homes seem to face for such a cruel act was a fine. It’s not nearly enough to deter them from doing it again. 

It’s tempting to believe that people like Resident #83 are in some outlier group. As though such a situation could never happen to you or me or someone we love. 

But the scenario is indicative of how some nursing homes treat their patients. It can happen when a resident behaves aggressively, has a substance use problem, or even if they lose their Medicare or Medicaid coverage. If you can’t pay your bills or cause too much trouble, you’re out.

Personally, I’m lucky enough to have family who I can live with now, and I’m also lucky enough that my health issues have not yet required skilled nursing care. But I’m well aware of my deteriorating body and how easily I too could end up in such a situation.

We are supposed to be human beings. We are supposed to care for each other. It shouldn’t matter if Resident #83 was drinking three 24-packs of beer a day. She still deserved medical care. All of us do.

Unless we start truly regulating medical providers to force them to actually care for their patients, situations like this will only get more common. And one day, it could happen to us or someone we love.

I have thought about Resident #83 many times since first reading the Signal article last week. I hope that she found somewhere to go. That some distant relative took her in, or that she was able to get a bed in a hospital or a different nursing home. But I know that the most likely outcome is that she died, alone and scared. 

It’s horrifying and it should never be allowed to happen.

Getting a Second Opinion From a Doctor Isn’t Always Practical

By Crystal Lindell

The first thing I did when I started dealing with debilitating chronic pain was go to the emergency room. The second thing I did was follow up with a local primary care physician.

But when nothing improved after a few months and multiple appointments with the doctor, I did what I had always been told to do in such a situation: I sought out a “second opinion.”

Alas, the second doctor wasn’t any help either. Neither were the third, fourth, or fifth.

If you’re dealing with any sort of complex health issue, odds are high that you’ve also had a bad experience with a doctor. Perhaps they dismissed your symptoms, refused to treat your pain, or maybe they were just plain mean.

A common refrain from healthy people in such a situation is: “Just get a second opinion.”

It comes across like common sense, especially in a consumer-culture where it’s smart to shop around. And while I wouldn’t advise against getting a second opinion – I have obviously done it myself on many occasions – there are some very important warnings that need to be included here.

One, getting a second opinion is both expensive and time consuming – assuming it’s even possible in the first place.

You can’t just leave your doctor’s office, walk next store and ask for a different doctor. You have to call around, find someone willing to take your insurance, and hope to get an appointment sometime in the next six months.  A lot of people, understandably, just don’t have the resources for such a task, especially when they aren’t feeling well.

Plus, when you do finally get in to see them, there’s a good chance they won’t be any help. So, you’re just out the time, the money, and the energy it took to get to their office.

Not to mention the fact that if you live in a rural area, a second opinion could be next to  impossible. There are many places in the United States where there literally is no second doctor within 100 miles to opine. 

Personally, I spent thousands of dollars traveling around the Midwest seeking out second opinions – including two fruitless trips to the Mayo Clinic. In the end, I was left with insurmountable medical debt and medical system burnout.

While I was eventually diagnosed with Ehlers-Danlos Syndrome, that did not happen because I sought a second opinion. It happened because multiple readers emailed me to suggest I look into it, so I brought it up to my doctor, and they sent me to a specialist to confirm it. 

Second opinions don’t just drain you though. There’s another, more hidden aspect to them as well. 

If you go to a different doctor to get a second opinion, you could be accused of something called “doctor shopping.”

The term is specifically used to dismiss patients who seek out second opinions, and most commonly, pain patients. 

It’s a code doctors use to frame a patient's desire for a second opinion as an effort to “score” opioid pain meds like a criminal.

Of course, in real life, if you’re actually dealing with horrible pain and the doctor you see is refusing to treat it, it makes total sense to look for a physician who will treat it. Any human in that situation would do the same thing. Pain refuses to be ignored. 

But common sense is not a factor if you are given the label of “doctor shopping” in your chart. Such a note will be used to dismiss all of your pain going forward.

Plus, in the age of easily transferable electronic health records, once anything like that gets put in your file, every doctor you visit will likely see it. 

So, while it’s entirely understandable that loved ones will often advise their sick family and friends to get a second opinion if they aren’t finding relief or answers from their doctor, it’s important to remember that it’s not always that simple. 

Of course, in a perfect world, patients wouldn’t even need to worry about second opinions, because the first doctor they saw would be kind, thorough and effective. We don’t live in that world though, so patients are left to navigate a lot of imperfect choices.

Doctor Faces Backlash After Claiming Four Chronic Illnesses Are Overdiagnosed

By Crystal Lindell

This week, a doctor on X (formerly Twitter) decided it was a good time to infuriate a bunch of patients with chronic illnesses.

Adam Gaffney, MD, a pulmonary and critical care doctor at Cambridge Health Alliance and Assistant Professor at Harvard Medical School, wrote this:

“Over-diagnosis / misdiagnosis / self-diagnosis of EDS, MCAS, POTS & Lyme is a real problem, and it would appear that there is little appetite by medical professionals to discuss this issue publicly.”

For those of you unfamiliar with the acronyms, EDS stands for Ehlers-Danlos syndrome,  MACS is Mast Cell Activation Syndrome, POTS is Postural Orthostatic Tachycardia Syndrome, and Lyme refers to Lyme disease. All four are serious chronic illnesses that are painful, can last a lifetime, and are difficult to diagnose and treat. 

I would link to Gaffney’s post itself, but amidst the backlash, he made his entire X account private. 

As of April 8 though, Gaffney had more than 20,000 followers, which is to say that this wasn’t some random provocateur on X/Twitter trying to stir up controversy by sharing his flawed viewpoint. Rather, it was a highly accomplished doctor with real influence. He teaches at Harvard!

Gaffney is not alone in his thinking. Indeed, any chronic illness patient will tell you that a lot of doctors feel this way. But those doctors are wrong, and I think it’s worth taking some time to discuss it, especially since I have EDS myself.

Gaffney’s post almost instantly went viral in the chronic illness community, and not in a good way. My X feed, which admittedly tends to include an outsized number of chronic illness patients, was filled with people pushing back.

DR. ADAM GAFFNEY / cha

Lorelei Lee (@MissLoreleiLee) wrote: 

“This is disgusting to say at a time when so many sick people are suffering because of the constant dismissal by doctors undertrained in these types of illness, overworked by a dysfunctional healthcare system, & seeing increased numbers in the wake of a debilitating pandemic.” 

While Barry Hunt (@BarryHunt008) wrote:

“Dear Adam,

When medicine takes a decade to name what’s destroying your life 

And calls you hysterical in the interim

"Self-diagnosis" isn’t the problem

It’s the solution.”

Of course, most patients with chronic illness already know the truth: the four ailments that Gaffney thinks are overdiagnosed actually tend to be under-diagnosed.  

Here is a 2025 study showing that of 429 patients who were eventually clinically diagnosed with hypermobile EDS, 405 of them experienced misdiagnosis in at least one of the five evaluated categories. They were told their symptoms were all in their head; that they were making it up; seeking attention; or labeled with Munchausen syndrome by proxy or some other factitious, made-up disorder.

Meanwhile, Dysautonomia International reports that – on average – it takes nearly six years for a patient to be correctly diagnosed with POTS.  And since COVID causes POTS, that means cases are rising and doctors need to adjust their thinking on how common it is. 

As for MCAS, the Mayo Clinic says that because MCAS has so many symptoms similar to other diseases, patients “can experience lengthy diagnostic delays while seeing various specialists to try to find answers."

And when it comes to Lyme disease, John Hopkins says many patients with Lyme are initially misdiagnosed because “early symptoms of fever, severe fatigue, and achiness are also common in many other illnesses."

Personally, it took me five years to get an EDS diagnosis after I first started suffering from chronic pain. And that 5-year span included two long trips to the Mayo Clinic, where it was missed both times.

All this despite the fact that one look at my over-extending elbows should have immediately put EDS on the radar of any doctor who saw me.

In the end, it was not a doctor, but PNN readers who led me down the right path, after multiple people emailed to encourage me to look into EDS.

EDS is also a dominant genetic gene, which means it runs rampant in my family. I’m sure that at least seven relatives on my mom’s side have it, but only one has been officially diagnosed besides me.

The ailments that Gaffney mentions also tend to be more likely to affect women, so it’s impossible to ignore the underlying misogyny in his assertions. Afterall, women are never sick, only hysterical and anxious.   

I also think part of this current hysteria about overdiagnosing illnesses is related to the fact that opioids and other controlled substances have been severely restricted in the last decade. The medications help people with EDS and chronic illnesses in general, and in the past patients may have just treated their symptoms and gone about their lives.  

Now though, people are forced to get an official diagnosis if they want any hope of using a controlled substance to help them get through the day.

In the end, I feel deep sorrow for Gaffney’s patients. 

My hope is that this whole ordeal will inspire him to reflect on where his thinking may be wrong. But I fear that instead, all the push-back will just make him double down. And he will just go on dismissing his patients and encouraging other doctors to do the same.  

GLP-1 Drugs Offer Real Hope for People With Pain or Addiction

By Dr. Lynn Webster

In Greek mythology, the goddess Panacea carried a potion that could heal any disease. It’s a seductive image, and it’s how GLP-1 drugs can start to feel as reports pile up about their potential in treating conditions besides diabetes and obesity.

A recent Washington Post article alludes to Panacea before describing the emerging signs that people living with pain or addiction might benefit from GLP-1s.  

The promise is real. So are the risks. If GLP-1s are going to move from metabolic medicine into the worlds of pain and substance use disorders, we should talk about them the way we would talk about any powerful new class: with evidence, not mythology.

What We Know About GLP-1s and Pain

The most solid pain evidence so far involves knee osteoarthritis — a condition where weight, inflammation, and function are tightly linked. In a 68-week placebo-controlled trial, once-weekly semaglutide (Ozempic, Wegovy) injections in people with obesity and moderate knee osteoarthritis produced significantly greater reductions in body weight — along with significant improvements in pain scores and better physical function.  

That is meaningful. But it doesn’t automatically make semaglutide a “pain drug.” Weight reduction can relieve joint pain, and metabolic improvements may dampen inflammation. Researchers are still sorting out what portion of the pain relief is caused by weight loss alone.  

Outside osteoarthritis, the evidence is thinner. Preclinical studies suggest GLP-1 receptor agonists may reduce neuropathic pain through anti-inflammatory and neuroprotective effects.  

One promising real-world signal comes from fibromyalgia. A large analysis of over 96,000 patients found GLP-1 use associated with significantly lower odds of needing an opioid prescription or of being diagnosed with chronic pain and/or fatigue.   

These observational data are hypothesis-generating, but require confirmation in future studies. More rigorous randomized trials for fibromyalgia, diabetic neuropathy, and other chronic pain syndromes are needed.

What We Know About GLP-1s and Addiction

Here the signal is surprisingly strong — but still preliminary. The evidence so far suggests that GLP-1s appear to modulate reward pathways in the brain that shape craving and compulsive drug use.

A large 2026 observational study of over 600,000 U.S. veterans with type 2 diabetes found that GLP-1s were associated with lower risk of developing substance use disorders (SUDs) involving alcohol, cannabis, cocaine, nicotine or opioids. Among those with preexisting SUDs, GLP-1s were linked to lower risks of emergency room visits, hospitalizations, mortality, overdose, and suicidal thoughts or attempts.

Observational data can’t prove causation, but the consistency across substances and outcomes provides a strong rationale for clinical trials.

We also have randomized evidence in alcohol use disorder. A small Phase 2 trial of 48 adults with alcohol use disorder found that once-weekly semaglutides reduced drinking and cravings over nine weeks compared with placebo.

More research is underway. A recent systematic review identified 33 registered trials looking at GLP-1s for SUDs, predominantly for alcohol and nicotine, but with growing interest in opioid and stimulant SUDs.  

The Risks We Can’t Minimize

The common side effects of GLP-1s — nausea, vomiting, diarrhea, constipation and appetite suppression — are often manageable, but they can be therapy-ending. That matters, because many GLP-1 benefits appear to fade when treatment stops.

In pain and addiction care, “stop-start” patterns are common when insurance coverage shifts or supply is disrupted. Those interruptions are often risky.

A 2026 Washington University School of Medicine analysis of veterans with type 2 diabetes found that even brief interruptions of GLP-1 treatment -- as little as six months -- were associated with higher risk of heart attack, stroke, and death compared with continuous use. The risks rise even further the longer the gap, with up to 22% higher risk of a major cardiovascular event after two years off therapy.  

More concerning are rare but serious complications. Reports of severe delayed gastric emptying (stomach paralysis) remain a clinical concern. Cohort studies have also reported an association between semaglutides and neuropathy in patients with diabetes, although causality remains debated and the absolute risks are low.  

Emerging observational data have raised questions about musculoskeletal safety, with special relevance for people already limited by pain. Some analyses link GLP-1 use to modest reductions in bone mineral density and possible increases in osteoporosis or fracture risk in older adults. Tendon injuries have also appeared in some patients with obesity.  

These findings need replication. Because GLP-1s can slow stomach emptying, clinicians must plan around procedures. The American Society of Anesthesiologists recommends individualized perioperative strategies, including temporary liquid diets for some higher-risk patients.

A Measured Path Forward

GLP-1s may end up helping people with pain and addiction — and if they do, that would be a genuine advance. But we should not rush from “promising” to “proven,” or expand GLP-1 use without a clear plan for monitoring and safety.

Panacea was a Greek myth about curing everything. The modern task — identifying who benefits, who is harmed, and how to use powerful medicines in ways that reduce suffering without creating new forms of it — is harder.

That will require larger, dedicated randomized trials in addiction, targeted studies in pain syndromes beyond knee osteoarthritis, longer-term musculoskeletal safety data, and honest communication about both the promise and the risks of GLP-1s.

Lynn R. Webster, MD, is Senior Fellow at the Center for U.S. Policy and is co-author of the forthcoming book, “Deconstructing Toxic Narratives: Data, Disparities, and a New Path Forward in the Opioid Crisis,” to be published by Springer Nature.

The Fear Mongering Over Tiger Woods’ Hydrocodone

By Crystal Lindell

Famed Golfer Tiger Woods was involved in a rollover car accident this week.

While the crash was likely caused because he was reportedly looking at his phone and changing the radio station when it happened, something else has taken up nearly all the coverage of the event: Two hydrocodone tablets.

Police said Woods failed a sobriety test at the scene and that they found two hydrocodone tablets on him at the time of the accident. The pills were marked “M367” which means they were likely 10mg hydrocodone and 325mg acetaminophen combination tablets, commonly known as a generic form of Norco or Vicodin.  

For context, hydrocodone is a Schedule Two controlled substance. A 10mg tablet is equal to 10 morphine milligram equivalents (MME). The CDC recommends caution when taking daily doses that exceed 50 MME. 

A hydrocodone tablet is routinely given out for post-operative pain or extensive dental work, such as wisdom tooth removal. I think anyone who’s ever had an out-patient surgery is probably familiar with the medication.

For chronic pain patients who already have a tolerance to opioids, hydrocodone is typically something that can be taken to reduce pain while also performing routine daily tasks, like cleaning the house and working. In fact, I took one right before writing this column.

It’s very likely that Tiger Woods takes them for chronic pain, seeing as how he has had multiple back surgeries. As such, he likely has a tolerance. 

That’s not to say that taking a couple hydrocodone couldn’t cause impaired driving and lead to a crash. It most definitely could. Especially if the reason Woods had two hydrocodone on him was because he had taken a bunch more.

It’s just that the way the media has covered the accident and the two pills would make you think he was basically found with two pounds of street fentanyl on him.

The Palm Beach Post ran a story headlined, "What is hydrocodone? Tiger Woods had the pills during DUI arrest.” In it, they write: 

“Hydrocodone is an opioid used to treat severe, chronic pain. The medication has a high risk of addiction and misuse with some of its most common side effects including dizziness, loss of consciousness and severe tiredness.”

I mean, yes, technically that’s true-ish. Hydrocodone is indeed used to treat severe chronic pain, but they left out “among other things.” Most people who take hydrocodone for chronic pain build up a tolerance and have no severe side effects, especially “loss of consciousness.”

Meanwhile, the New York Post ran a story headlined, "The dangerous risks of the pills found in Tiger Woods’ pocket in DUI arrest"

The article was especially egregious. In it, they write:

“While the drug is prescribed to treat chronic pain or manage pain after surgery or injury, using it is not without risks — and serious ones at that.

A highly addictive opioid, hydrocodone is in the same class as oxycodone, morphine and fentanyl — with a high enough risk of abuse that prescriptions have dropped by as much as a third since their peak in 2011.”

Trying to equate hydrocodone to fentanyl isn’t just disingenuous, it’s also potentially harmful to pain sufferers..

For those who don’t really know what hydrocodone is, that kind of messaging means a pain medication that will almost certainly be prescribed to them or a loved one at some point will become something to avoid. They may not take it when they need it. Or they may shame a loved one for taking it when they need it.

Not to mention how harmful coverage like this is to chronic pain patients in general, who have been trying to fight the stigma around opioid medications for years now.

There is legitimate concern that media stories like this will make already overly-cautious doctors even more hesitant to prescribe hydrocodone to patients who really need it.

On Reddit you can already find chronic pain patients worried about the ramifications of this type of coverage. One user referred to the New York Post article as, "Just another opportunity to demonize opioids and chronic pain patients."

Another poster lamented: "I see my PM (pain management) physician on Friday. I'm sure this will be a topic he'll bring up. Sigh..."

In another Reddit thread, a user writes:

“Everyone knows that people who take opioids long term get used to the effects of the opioids as their tolerance grows and you learn to have a pretty normal life and do things like work, go to school, and yes… drive. I mean, are we supposed to lock ourselves in our houses and never come out again and just wither away? No, we still have a life.”

It’s disappointing to see the news media jump on any chance to continue demonizing opioids. Reporters should know better by now. 

One day, they themselves will likely need Norco or Vicodin for some sort of pain. And because of their own work, they may have trouble getting it. 

When You Have Chronic Pain, Every Day Is April Fool’s Day

By Crystal Lindell

When you’re a chronic pain patient, every single day can feel like you’re the butt of an April Fool’s Day joke: 

Think your doctor will actually help you? April Fool! 

Think your insurance will cover your medical bills? April Fool! 

Think you’ll be able to get your opioid prescription filled? April Fool! 

It’s never funny when you have these experiences, but they happen all too often.

When you first start enduring chronic pain, you’re hopeful that the medical system will provide answers and solutions. But as you work your way through the system, it eventually becomes clear that many of the things you probably thought were true just… aren’t. 

Think you’ll be able to get an appointment with a specialist in the next 12 months? April Fool!

Think your doctor will continue searching for answers after all your blood work came back “normal”? April Fool!

Think your prescriptions will be affordable? April Fool!

Of course, it’s not just the medical system. Many pain sufferers quickly find out that it’s also April Fool’s Day in the non-medical areas of their life, too. 

Think your job will provide accommodations? April Fool! 

Think your friends will treat you the same after you develop chronic pain? April Fool! 

Think you’ll be able to qualify for disability? April Fool!

Not to mention just trying to exist day to day. 

Think you’ll be able to shower every day? April Fool!

Think you’ll be able to keep your house clean? April Fool!

Think you’ll still be able to work as much as you did before? April Fool!

But the thing about people living chronic pain is that we are fast learners. We’re also resilient – because we don’t have any other choice. That means even when it becomes clear that life with chronic pain is just one cruel joke after another, we still keep going. 

So when you think about it, we’re the ones who really have the last laugh after all. 

Losing My Religion: How Chronic Pain Took My Faith

By Crystal Lindell

Next week is Holy Week, but I won’t be spending any of it in church.

It hasn’t always been that way. Before I developed chronic pain in 2013, I was quite devout.

In fact, in the years right before my health issues, I was even working as a paid youth leader for a Methodist Church.

I taught teens every Sunday; regularly gave sermons to the entire church; and led annual out-of-state mission trips. I was a regular at Bible Study; on the board of a local youth ministry organization; and spent multiple nights a week at church functions.

I read the Bible and prayed every night.

At the time, I assumed nothing could shake my faith in God. I really thought that I’d be part of The Church until I died.

And back then, I would have spent almost every night leading up to Easter at some sort of church service or event.

Not this year though. In fact, not for many years.

When I developed chronic pain, I became too sick to continue working as a youth leader, so I had to quit that role. And then I had to move in with my mom an hour and half away, so I also had to find a new church.

And I did try. I attended multiple churches in multiple denominations. But being in pain all the time made getting to Sunday morning services more trouble than it was worth.

Eventually, church faded from something I did to something I used to do.

I really did grapple with the loss though.

Looking back, two things really stopped me from ever fully going back to church..

The first was that I had felt very let down by the lack of support I received when I developed health problems. There were almost no accommodations made for me at church, and I was honestly a little bitter that they were so quick to accept my resignation from my role as youth leader.

Maybe this is a selfish thing to confess, but the Church as a community felt like it had failed me. I had invested so much into the Church – but when I needed something back, I felt ignored.

It was not just the Church as a community that I could no longer abide. My faith in God Himself was also badly damaged.

And to be honest, one of the things I kept coming back to was my jealousy of Jesus dying on the cross.

My whole life I heard about His great, suffering sacrifice. It was always relayed to me as the worst possible thing anyone could ever go through. Carrying the cross, nails through his hands (or wrists depending on your historical reference), and a literal crown of thorns.

Because Jesus died in pain, we got to live.

But then I developed chronic pain. And suddenly, Jesus being in pain for a day before his death seemed enviable.

My pain had lingered for months, and eventually years. I wasn’t lucky enough to find relief through death. Instead, my body insisted on persisting despite the pain, forcing me to live in Hell while I was still on Earth.  

All of the reverence that pastors had tried to convey via the story of Jesus’ incredible suffering before his death on the cross now fell flat.

Instead of finding something worthy of worship, I was just envious.

After that, the whole idea of faith came crumbling down. I really hit a wall. A lot of people do and ask: How could a loving God allow so much suffering in the world? 

If He existed, He suddenly felt cruel to me. But then, maybe the answer was simple: He didn’t exist. 

To those who don’t have chronic pain, perhaps my reasons for eventually leaving the church and my faith sound self-centered or childish. But chronic pain changes your perspective of the world, whether you want it to or not.

It has shown me the reality of the human condition. And through sheer force of will I have used that new perspective to write about my experiences. I do it so that others, even in their worst moments, know that they are not alone.

Whatever doesn’t kill you can expand your understanding of your fellow human beings. If you are open to it, it can offer you a glimpse of a broader spectrum of what life on this cold planet is actually like.

Yes, I lost my faith, and my church. But I gained new understanding and more empathy. And maybe one day faith will find me again.

How Chronic Pain Makes Childcare Difficult

By Crystal Lindell

I can’t pick up my 21-month-old niece anymore.

Every time I give in to temptation and lift her, I hurt my back and have to take 2-3 days of rest to recover, lest I risk throwing out my back again. And that’s even if I’m just quickly lifting her out of the playpen.

It’s heartbreaking, and it’s just one small way that chronic pain makes it so difficult to care for her.

I’m not a mom, but I have loved and cared for many small children over the years, so I know first-hand just how difficult chronic pain makes childcare. Unfortunately, it’s a burden that is not often acknowledged.

The prevailing attitude tends to be that if you love a child, you should be able to push through any physical pain that you might have to care for them.

Even the companies that make things like cribs and high-chairs seem oblivious to the physical toll that caring for young children can take. As one of my friends, who herself has four children, recently told me: “Imagine lifting weights while bending over a railing and standing on your tip toes.”

No physical trainer in the world would suggest such a move. But if you want to get a baby out of a crib, and you’re even slightly below average height, it’s what you’ll have to do.

These days, my mom and I watch my niece 3-4 days a week because her parents are on overnight work schedules.

Over the last few weeks I had to stop picking her up at all. It’s not just sad because it’s the end of an era, but it’s also logistically difficult to deal with.

Anytime I need her lifted, I have to call for help and put that task on someone else. And toddlers actually need to be lifted all the time! It basically makes it impossible to watch her by myself for long periods.  

It’s just one of the ways having chronic pain impacts my ability to care for her.

Young children are, understandably, very needy. They need breakfast regardless of whether or not you’re dealing with a pain flare. They don’t care if you’re not getting enough sleep. And they want to play outside even if you’re feeling miserable.

Beyond the day-to-day, there’s also the wear and tear that caring for children does to your body. I’m pretty sure that lifting her up so often over the past few months is partly why I reached a place where my back could no longer handle it. 

Even caregivers who are healthy are likely damaging their joints by constantly picking up and holding a toddler.  

Thankfully, I live with other family members who are able to care for my niece when my body won’t allow it. But there are countless single caregivers out there who don’t have another adult around to help out when their body rebels.

It’s why community support is so important when it comes to raising children. My biggest piece of advice to all new parents is, if at all possible, to live within walking distance of someone you trust enough to watch your child.  

The physical toll of caregiving is one of the many reasons pain patients need access to pain medications. They make it possible for us work, do household chores, and help our families.

Some days, a low-dose hydrocodone is the only reason I’m able to physically endure caring for my niece. A lot of people still think people only want opioids so that they can avoid responsibility, but pain patients know the truth: We take them so that we can function.

Sadly though, even opioids can’t give me back the ability to pick up my niece again. My back just won’t allow it. But thankfully, she’s always happy to stand on a chair to give me a great big hug.