RIP Melissa Brooks: ‘It Starts with Pain and It Ends with Pain’

By Ann Marie Gaudon

Melissa Brooks wanted me to tell her story once she was dead. She wanted others in pain to know her experience in trying to access medically assisted death in Canada.

Melissa was in pain -- severe, intractable pain -- and if she met the criteria for Canada’s Medical Assistance in Dying (MAID) program, she’d be able to end her life with dignity and mercy.  Melissa suffered from multiple chronic conditions, was mostly wheelchair bound, and legally blind. Euthanasia is what she desired, but applying for MAID wasn’t easy.

“It starts with pain and it ends with pain. And there’s a bunch of medical system mess-ups in the middle,” Melissa told me.

Melissa was free with her words, so honest and articulate. She had different personas she’d use to tell people about her desire for death, because if she shared how deep her misery was, Melissa thought she’d lose friends. On the days she couldn’t hide her pain, she didn’t interact with people and expressed to me that this was a lonely place to be. Melissa felt that no one knew what she was going through.

“The quickest way to lose friends is to be honest about how much pain you’re in,” she said.

Curiously, once she requested MAID, Melissa felt a newness in her relationships. Her friends now knew they had a limited time to grieve and they no longer had to carry the “nitty gritty” of her for an extended time.

Most of our conversations happened as Melissa went through the strict process that MAID requires for medical assistance in dying to be granted.

I wrote a column about the many difficulties my friend Maggie Bristow had accessing MAID to end her life, after nearly three decades with chronic pain.

Melissa’s struggles with MAID were different. This intrigued me – what is going on here?  Why isn’t there a standard protocol? You meet the criteria and then you are approved. But that’s not what happened.

You need two doctors to assess your application for MAID. Melissa's first assessor pissed her off by repeatedly saying her medical condition was “complicated.”

Of course it was – all MAID cases are complicated.

MELISSA BROOKS AND HER SERVICE DOG, RUBY

“I’m complicated, my case is complicated, my pain is complicated. I think it’s medical BS and I almost fell for it, like I was asking for too much,” Melissa said. “I didn’t feel that complicated until these people were telling me that I was. I have been suffering for decades, my quality-of-life sucks, and I don’t want to do this anymore.”

‘A Moral Dilemma’

In 2016, Canada’s Parliament passed legislation that allows eligible adults to request medical assistance in dying. However, a person’s death had to be “reasonably foreseeable.” This was challenged and Parliament amended the legislation in 2020 to create the current two-track system.

MAID still requires a “grievous and irremediable medical condition,” but a reasonably foreseeable natural death is no longer necessary. If you’re likely to die soon, you’re on track one. If you aren’t and you still want an assisted death, you’re on track two.

With my friend Maggie Bristow, nothing was that simple. It took years for her request to be approved.

Melissa also went through struggles with MAID, with her first assessor questioning her mental well-being. The problem for them was that Melissa was not mentally ill.  The first assessor, not having found any reason to deny Melissa’s request except for her own conscience, did eventually say yes. But that did not come without a price.

“When the first assessor called me well after 8pm – when she knows that is not a good time for me -- she called to assassinate my character,” Melissa said. “She was so mean and made the process so much worse. She accused me of lying and yelled at me over the phone, ‘You’ve put me in a moral dilemma!’”

Poor Melissa was so upset. We talked about how this truly had nothing to do with her and that this particular assessor should not be working for MAID. Not all assessors are equipped to deal with life and death decisions.

This first assessor was so enraged and upset that she told Melissa she would next be seeing “the cream of the crop” assessor -- the one who teaches the others. It was bad news from the beginning, as his treatment was also less than desirable. He sent a psychiatrist to Melissa’s home to assess her mental health. 

The psychiatrist made it a point to tell Melissa that he preferred to begin with a clean slate and never searched or looked up anyone’s history before meeting them. That was a blatant lie. Melissa was an abuse survivor, but that was not the reason she was seeking MAID. The psychiatrist asked questions that only someone who had done a deep dive into her medical history would be asking.

It was all so fake, and Melissa fired this second assessor and his psychiatrist. She was back to having one yes.

‘Killed Me With Kindness’

Next came the third assessor and Melissa was hopeful. She seemed open and progressive. She told Melissa she identified as queer (I’m not sure why or how that would have mattered), but she was kind and that was an improvement.

The process of requesting and receiving MAID should take 90 days. Melissa’s case was taking much longer. In terrible pain and desperate, Melissa tried to take her own life. It did not work, but landed her in the psychiatric ward of her local hospital. I believe this is what sealed her fate with the oh-so-nice third assessor.

“(She) killed me with kindness after not even spending an hour with me, just to tell me she would be saying no,” Melissa said. Now Melissa was in limbo. She had a “yay” and a “nay” from two assessors.

That made Melissa even more frustrated. She met MAID’s criteria of being over age 18 and having an “irrevocable and grievous medical diagnosis” that could not be cured or treated.

“MAID’s job is not to fix the patient,” she told me. “Their job is to say, ‘Yes, they met the criteria’ and to move forward, not ‘This is icky because they’re young and they don’t look like they have a terrible life. They don’t look like they’re suffering or that they want to die.’”

Now Melissa had no help, no guidance, no nothing. She wanted to put in a complaint. But to whom?

A few miserable weeks later, she did get something. It seemed to begin as a urinary tract infection (UTI), which could be quite dangerous for Melissa as she was so physically vulnerable to begin with. Then she started to cough. I asked her if she would call her practitioner for treatment and she agreed, but I saw the writing on the wall.  Her doctor said she had a UTI, plus pneumonia, but agreed with Melissa that this could be treated from home.

You may have already figured out what came next. Melissa did not take the antibiotics she was prescribed, and stopped eating and drinking. She had a “Do Not Resuscitate” order from before she even applied for MAID. Can you blame her? I sure didn’t.

On January 30, while I was working, I had a voicemail message from Melissa telling me that she was going to begin palliative sedation that night and to say a gracious goodbye. She left her friend’s number to call should I need anything.

Melissa Brooks died on January 31, 2025. You might think for a moment that is what she wanted, but it is not. In the end, MAID was an epic fail for her. She wanted to die at home, perhaps with a friend like me, and for sure with her beloved service dog.

I am so sorry Melissa that everyone failed you. My hope is that you somehow find peace in the afterlife. You were one-of-a-kind and I shall never forget you. Blessings.

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 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.   

The Best Advice I Got From My Therapist About Chronic Pain

By Crystal Lindell

I started having chronic pain at 29 years old, and the speed at which it upended my life left me with what felt like body-wide whiplash. 

I developed intercostal neuralgia seemingly overnight, which resulted in daily chronic pain in my ribs. 

At the time, I was working two jobs, maintaining an over-active social life, and living on almost no sleep. It’s a lifestyle I tried to maintain well after my body was telling me to stop.  

My mindset had not caught up with the new reality of my body yet, and I paid the price: I kept ending up in either the emergency room or immediate care. My body now had limits, and I was doing my best to ignore them. 

Because the pain was so severe and made me feel so hopeless, around this time I also asked my primary care doctor for a referral to a psychologist. The pain was making me suicidal. I needed help. 

In one of the best gifts of fate, the psychologist I was paired with had a lot of experience in helping people navigate chronic illness. She very likely saved my life. 

The first appointment I went to, I spent the entire hour sobbing about my new reality. 

Eventually, after we started meeting every other week, I came out of the fog, and her advice and guidance were what helped me finally start to see clearly. 

While I’m grateful for her tips about things like keeping a daily gratitude journal, and techniques she shared about how to communicate to my boss and my loved ones about my limitations, there was one piece of advice that helped the most. 

My therapist taught me about activity pacing. 

It sounds so obvious now that I understand the concept, but after living the first 29 years of my life at full speed and only sleeping when I physically could not stay awake a second longer -- pacing was revolutionary for me. 

The Basics of Pacing

In short, pacing is basically approaching activity levels in a more intentional way -- not doing too much and not doing too little. It also means that you don’t wait to rest until you need to. Instead, you rest proactively. 

So, rather than staying awake for 24 hours straight trying to get everything done for my two jobs, I started to stay awake for a more manageable 14 hours and then sleep for 9 hours. After waking up, I learned to slowly ease myself back into activities. 

Because I grew up in a culture where I was constantly told that working well past my limits made me a better person, pacing felt almost illegal. Until my therapist explained it to me, it had literally never occurred to me before that I could rest proactively.  

Making sure I was getting enough sleep made a drastic difference in the severity of my physical pain, and it also helped give me mental clarity for dealing with the shock and challenges of my new body. 

However, it did take me a couple years to fully understand the foundational principle of pacing: It’s not just doing too much that’s a problem, it’s also doing too little. 

Yes, therapy helped me to stop pushing myself beyond my limit, but for about a year after that, I went to the other extreme. I was so scared of aggravating my pain, that I spent every day in the house, doing work from home, and then sleeping – with little else mixed in. 

Around this time I found out that my vitamin D levels were dangerously low – the lowest my doctor had ever seen in a patient. I think it was because I was getting almost no exposure to sunlight for days on end. 

So that is what spurred me to learn that balance goes both ways. I started to understand the importance of doing some activities sometimes, and resting other times, without eliminating either one.

Pacing has become the foundation of my life these days, more than 10 years after I first started having daily chronic pain. It’s a huge factor in keeping me both physically and mentally healthy. 

You don’t have to just take my word for all this though. A small 2021 study showed how helpful pacing can be. 

According to a “Very Well Health” article about the study, the researchers taught participants – who all had chronic health issues – the basics of pacing.

The pacing framework included:

• Recognizing current unhelpful behaviors

• Finding baselines

• Practicing self-compassion

• Being flexible

• Gradually progressing activities

The study found that the pacing results happened fast. Some of the patients who attended a rehabilitation center for issues related to chronic pain and fatigue experienced the benefits of pacing after just two sessions. 

The study also included quotes from the participants talking about how it impacted them. 

“Before going to the programme I was just stuck in a situation where I'd do what work I could when I could…and then suffered for it; and I didn't really think about it the same way as when it's explained to you,” one patient said. “So, whereas I thought I was pacing myself naturally, in a sense I wasn't.”

Indeed, that’s the magic of good therapy. It gives you a new perspective, and if you’re really lucky, it gives you tools that help you live a better life. 

I’m not here to tell you that pacing in our society is easy.. As I’ve said, it took me years to truly implement it into my life. And I still struggle with days when I over do it, or even rest too much. 

Overall though, as a foundational principal, pacing is the most important thing I do to manage my chronic pain. And I think if you try it too, you’ll find out first-hand just how helpful it can be.

A Pained Life: My Fantasy Trip to Nowhere

By Carol Levy

I'm watching TV. An ad comes on for a cruise to a tropical port. It looks so inviting.

At the store I overhear someone describing the “wonderful” trip they recently took to Europe, touring Paris and dining in a real Italian trattoria. Their joy in describing the trip is hard to miss.

For a minute, even two, my mind churns out fantasies of going on a trip of my own. Maybe a safari in Africa or a trip to France to see the Eiffel Tower and eat real French pastry. 

For a moment, my mind flies with the excitement of it, before crashing back to earth

In my mind I can take those trips. Because in my mind, in my fantasies and dreams, I have no pain. I'm just a regular normal person. Then the facts come rushing in, slamming me. What? You’re going to leave the pain behind?

I don't have this fantasy much anymore, after all these decades of living with pain. But, once in a while, I see myself without pain. I'm out in the world. I have a job again, making friends and socializing.

For a fleeting second, I even see myself -- not the old lady I am now -- but 26 again, before the pain started and ripped away any chance of being “normal.”

Then the final slap in the face: You're 72. Twenty-six is long gone, never to return.

So many articles are written abbot how to cope with pain without drugs: meditation, mindfulness, and relaxation techniques. They may work for some of us. And it's great when they do. But they don't work for me because my trigeminal neuralgia pain is not in my body, it’s only in my face.

It's frustrating when I read these articles, many in medical journals or on medical websites, because invariably they don't have relevance for many of us. The advice telling us to exercise more and to not “give in” to the pain, but to do what hurts in order to help our bodies realize we can move more and do more.

That doesn't help for cranial neuralgias, many of the people with CRPS, or the pain associated with lupus, multiple sclerosis and arachnoiditis. The suggestions are as frustrating to me as the ridiculous idea that I can go on a ship or a safari.

I want the pain to go away. I want to be a “normal” person who can do pretty much whatever I want, whenever I want. Even go on a trip. The pain always tells me: No, ain't gonna happen.

I keep waiting for the articles and doctors to finally say, “Here's what we can do to minimize your pain.” Stopping it entirely may be a step too far to hope for.

But please, medical community, stop with the cliches, especially ones that imply it is my fault that I have chronic pain. If I could exercise or think it away, I surely would.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here. 

6 Things to Try If Your Doctor Won’t Prescribe Opioid Pain Medication

By Crystal Lindell

Many doctors are extremely resistant to prescribing opioid pain medication for any reason these days. Whether it’s for post-operative pain, chronic pain or even pain from terminal cancer, patients are finding that doctors shrug their shoulders and tell them to go home and take ibuprofen.

Unfortunately, over-the-counter pain medication is just not effective in many cases, and that can leave patients in desperate situations. 

As someone who’s been navigating my own chronic illness for more than a decade, as well as helping my loved ones with their health issues, I do have some very realistic advice I can offer.

If you ever find yourself in extreme pain, but your doctor won’t give you pain medication, here are 6 things you can try. 

1. Doctors Expect You To Negotiate

Many doctors now have an unwritten policy where they will only give you opioid medication if you ask a certain number of times, especially when it comes to acute trauma like a broken bone or post-op pain. 

Doctors believe that this helps them to make sure that you really need it. 

So just because your doctor tells you no one time, two times or even three times, that doesn’t mean you should just accept the response. If your pain is severe enough that OTC medication is not working, then ask again. And again. Ideally, they eventually relent and will send in at least a small opioid prescription for you. 

This also helps future patients. Many doctors assume that if patients don’t ask repeatedly for pain medication after a surgery then that means that the surgery doesn’t result in severe pain for anyone. By showing them that you need it, you make it more likely for doctors to believe the next patient.  

2. Tell Your Doctor You’re Unable To Work Due to Pain

Unfortunately, under our current financial structures, much of our worth as humans is still tied to our ability to be productive at our jobs. So telling your doctor that you’re in too much pain to work may inspire them to finally send in an opioid prescription for you. 

They do not want you missing work, which could mean you losing health insurance and being unable to pay them. 

3. Threaten To Go to the ER

Another option when your doctor refuses to give you opioid medication is to tell them that you’re going to go to the emergency room then. This will often spur them to send in a prescription.to your pharmacy.

When it comes to something like post-surgical care, many doctors feel like it makes them look bad when their patients have to go to the ER for after-care. 

I have also seen this work for chronic pain as well, especially if you’re in their office when you bring it up. One time, for example, after explaining that I was going to go to the ER because my pain had spiked, my doctor gave me stronger pain medication in his office.

As an aside: Just make sure that if you get something very strong, like a hydromorphone shot, that you also get medication for nausea, like Zofran. While most ERs do this as a matter of policy, sometimes a doctor will skip it if it’s administered in their office. 

This is something I learned the hard way after an in-office hydromorphone shot left me vomiting for more than 24 hours because I wasn’t used to the strength of the medication. The whole thing could have been prevented with some Zofran.

4. Go to the Emergency Room

If telling your doctor that you want to go to the ER doesn’t motivate them to send in an opioid prescription, then the next step is to actually go to the emergency room. 

In my experience, ER doctors will, at the very least, usually give you a dose of pain medication to take on site. That can help you get the pain down to a level where you can at least think clearly and then figure out next steps and/or get some needed sleep. 

Depending on the situation, sometimes you can also convince ER doctors to give you a small prescription for at-home use too, especially if it’s for something like post-op pain or a severe injury.  

5. Consider a Pain Management Doctor 

If you have chronic pain, many times your best option is getting a referral to a doctor who specializes in pain management. 

This is not ideal because pain management doctors tend to be quite different from primary care doctors. That’s because many pain specialists believe they are being watched by the Drug Enforcement Administration. The DEA has no medical expertise, but has targeted hundreds of doctors for what it calls “unlawful” opioid prescribing.  

Because of that, many pain management doctors act more like probation officers than medical professionals, requiring invasive and expensive monitoring like drug tests and pill counts on a regular basis. This means the patient experience tends to be more like being on probation than getting healthcare. The only thing missing is an ankle monitor.

That said, pain specialists are usually willing to prescribe a low-dose opioid if it doesn’t exceed medical guidelines, which could get them in trouble. For many patients, even a low dose can literally be life saving. 

If you can’t get pain treatment anywhere else, then it can be worth it to put up with the draconian atmosphere. 

6. Try Kratom or Cannabis

The two most effective pain treatments you can get without a prescription are kratom and cannabis, although your mileage may vary and their legal status varies a lot by jurisdiction. 

While I am not sure how effective kratom or cannabis is at treating short-term intense pain, like a broken bone, I have personally found kratom to be the only substance I can get without a prescription that helps my chronic intercostal neuralgia pain. I would describe kratom as having an extremely mild opioid effect. 

Personally, I use it by taking a spoonful of kratom powder with a swig of Gatorade, as I find that to be the most effective delivery method. However, there are many options, ranging from capsules to kratom candy and even kratom seltzer. 

I also know many others who have found relief by using cannabis, which is thankfully legal in many places now. THC gummies seem to be especially helpful to anyone who’s new to cannabis use and doesn’t want to smoke. Cannabis dispensaries are also usually staffed with knowledgeable, friendly employees who are happy to guide you to the best option. 

I always say pain will make you crazy much faster than you expect. Within just three days of severe pain, I have seen people openly saying they were ready to die. 

It’s a true shame that in 2025, when effective and cheap pain medication exists, so many people are still left to suffer simply because of opioid-phobia and an overzealous DEA. 

However, that doesn’t mean you should be forced to suffer through pain just because you may not know how to navigate the healthcare system. You do have options. 

And if you’re in a situation where you’re denied pain care that you need, I hope you’ll use it to inspire more compassion in yourself. Pain treatment is a human right, and the more people who support it, the more likely we are to get it. 

Can Disabled People Be Political Activists?

By Crystal Lindell

The world feels very broken these days – politically, economically and socially. Many of us already deal with broken bodies. Can people with disabilities do anything to fix a broken world?

The short answer is: Yes. 

The longer answer is: Not just yes, but that we must.  

While it can feel overwhelming to get involved in politics, even when you’re at peak health, there are a lot of ways you can fight back if you have chronic pain or other health issues that limit your capabilities.

Disabled people, including the chronically ill, bring a special expertise to political movements. For decades, we’ve been dealing with governments that often do not care about us. 

That apathy was made especially apparent when the 2016 CDC opioid guideline was released. Our concerns about the guideline were ignored and many pain patients were subsequently abandoned by doctors and the healthcare system.

But it’s even deeper than that. 

Disabled people learned first-hand that government regulators and our for-profit healthcare system do not actually care about anyone’s health. We were left largely on our own to fight off COVID. Not to mention how little the government does to make sure disabled people have access to basic necessities, as they make applying for government benefits nearly impossible. 

Now though, oppression is moving outward. Groups that were traditionally more protected from horrible governmental policies are also noticing how bad things have gotten, because it’s starting to affect them directly. 

What can disabled people do about any of this? Shouldn’t we just focus on our own lives for now? 

That would be a mistake. In fact, it is right now, when things are changing so rapidly, that it is most important for us to pay attention and advocate for better conditions for ourselves and others. 

The first step there is seeking out reliable news sources. In our current political climate, staying informed is, in itself, an act of resistance. While I understand the urge to check out of political news, it’s important to remember that it’s those who have information who have power. 

This is made especially clear by the fact that people in power work diligently to limit our access to accurate information through censorship, distraction and propaganda. 

Seeking and gathering accurate information is one way to fight back. Sharing it is also important. Communication is one of the foundations of political activism. 

This column is an example. I’ve been advocating for pain patients for more than a decade. While I haven’t personally changed any legislative policy that I know of, I do know that I’ve had an impact on people’s lives – which is what political activism is all about. I have helped people cope with life under our draconian drug laws and crumbling healthcare system. Many readers have reached out to tell me as such.

Giving people practical tips for living day-to-day can go a long way toward saving lives. And telling them how you’ve coped with adversity yourself can be extremely important. 

In our wellness-focused society, where health is often seen as a moral virtue, it can feel shameful to tell people about your health problems. But, in my experience, sharing our stories can be exactly the kind of thing other people need to hear.

If you can’t physically attend a protest march due to health reasons, that doesn’t mean you can’t be politically active. You can still donate to non-profits and advocacy organizations. If you’re not in a position to donate, you can help amplify their messages by sending emails, writing letters, sharing stories online, or even just talking to someone – all at little to no cost. 

Personally, I have found it to be really important to dive in and help locally. I volunteer at a local cat shelter every week, but it doesn’t have to be something that formal. I also cook meals for my elderly grandmother, my mom and their caretaker, because I know it helps lift a burden for them. 

Maybe you’ll find that you enjoy baking for a neighbor in need or checking on an elderly relative more regularly. 

When we help others, we really help ourselves. Human souls yearn to be in service to others Our desire to serve and our inevitable need to eventually be served are what stitches all of us together on the planet. 

Now is not the time to zone out and give up. Despite the physical battles many of us fight daily, we can fight back politically. More than that, we must.

Doctors Feel Helpless When It Comes to Patient Medical Debt

By Crystal Lindell

A new study looked at medical debt from the point of view of doctors and other medical professionals. What researchers found offers insights into how burdensome medical debt has become on the healthcare system as a whole in the United States – and how helpless doctors feel in the face of it. 

According to the Census Bureau, about 14 million Americans owe over $1,000 in medical debt and about 3 million owe more than $10,000.  

The new report – released by Undue Medical Debt, a nonprofit funded by the Robert Wood Johnson Foundation – found that medical debt is a serious problem for clinicians and their patients, and that it’s impacting how, when and if patients receive care.  

In short, doctors feel they are forced to weigh bad financial health versus bad physical health in their treatment decisions. 

For the study, Undue Medical Debt, held four focus groups in early 2024. Each group consisted of a diverse group of participants, including family doctors, internists, hospitalists, nurse practitioners and community health workers, who shared their experiences with patients struggling with medical debt. 

They found that cost-of-care conversations with patients were relatively common and that patients were less afraid to talk about their medical debt than anticipated. However, clinicians feel they have very limited training and few resources to offer patients 

Most focus group participants reported having regular conversations with patients about medical debt and that patients were concerned about paying for their care. But the healthcare system is so replete with confusing and often disparate policies that it is difficult to be a fully informed consumer. 

One clinician said that when patients take on medical debt, they end up deferring their healthcare, which is bad for them, their families and for the healthcare system as a whole. 

“Because you have someone that, if they could have come in a year and a half before, you’re treating elevated cholesterol and blood pressure, but they push off their care and a year and a half after that, they’re showing up in your emergency room with a stroke,” the clinician said. 

“That costs them more money, that costs the system more money, and so it’s a very negative perpetuation of bad value; when you put debt upon debt people stay away from healthcare.” 

Clinicians said that they hope the importance of physical health will win out, but those decisions are often out of their control. They worry about the patient who disappears from care, particularly those who show up months, years or even decades later with advanced disease that could have been successfully treated earlier. 

Several clinicians thought the healthcare system as a whole was on the verge of collapse. 

“I’m not sure how much power I have. I’m sure there’s something that I can do more of, maybe from a top level. I guess sit on a board, talk to some of our administrators,” one clinician lamented. “But in general, healthcare has just unfortunately become such a machine. You know, it’s just such a machine.”

They added that they’re trying to give people the best care they can, but time constraints hold them back. Many felt helpless. 

“We’re trying to address unbelievable amounts of problems, five and six different comorbid problems that are really, really serious and trying to prioritize, and we do that for probably, some of us, myself, 14 to 19 people a day, in some cases sometimes more,” one provider said.  

Undue Medical Debt said that the business of medicine has pulled clinicians away from practicing medicine, forcing them to become financial counselors on top of their other duties. While many note this is outside their purview, they also understand they have “no choice” but to play this role. 

Doctors and nurses in the focus groups blamed multiple actors for the state of the healthcare industry, such as insurers, pharmaceutical companies and health system bureaucracy.  

When testing policy fixes with clinicians, the most popular ones included: presumptive financial aid screening; hiring people to help patients access resources and financial aid in multiple languages; capping interest rates, and making home foreclosures due to medical debt illegal. 

The Consumer Financial Protection Bureau recently adopted a rule that bans all medical debt from credit reports and prohibits lenders from using medical information in their lending decisions. That will remove an estimated $49 billion in medical bills from the credit reports of about 15 million Americans. 

Veterinarians Know. Why Can’t Doctors?

As a patient, I have long bemoaned the fact that the cost of medical services is so far removed from providers. There aren’t many other businesses that operate in such a way. Usually the person selling a service has to be aware of the cost of that service. And make no mistake, in a for-profit healthcare system, doctors are selling you healthcare.  

There’s one example that highlights how absurd the situation has gotten – veterinarians. When I take my cat to the vet – a medical office where most customers pay out of pocket – the veterinarians and their staff are always acutely aware of the cost of each procedure, and they always provide an estimate up front. 

It’s a system that makes me believe such care is possible for human patients, too. However, anytime I’ve seen a doctor and brought up pricing before agreeing to a test or procedure, the doctor has looked at me like I was speaking in an alien language. They can’t fathom that they would ever be asked to provide a cost estimate for their own services, much less factor it into treatment options. 

I don’t currently have health insurance, so cost is an enormous factor for me now. However, even when I did have what people would consider “good” health insurance, co-pays and out of pocket expenses ruined my credit. 

Yet anytime I tried to get cost estimates in advance of treatments or procedures, they would imply that I must not value my body if I am concerned with such petty things as money. 

To be honest, even that was somewhat understandable a few years ago. But recently, many hospitals and doctors have resorted to what Undue Medical Debt calls “Extreme Collection Actions.” That’s when hospitals and doctors used collection methods such as suing people, taking their homes, or garnishing wages. 

For many patients in the United States, the system is set up so that when you see a doctor, they order tests and treatments without telling you any sort of price range at all. Then they send you an opaque bill that lacks any sort of price breakdown. And then they’ll report you to a credit collector if you don’t pay them. 

The fact that any of this is legal shows how broken healthcare has gotten. 

While many doctors quoted in the Undue Medical Debt study said they don't want to be bothered with talk about money, that’s a luxury their patients don’t have. 

Undue Medical Debt has a free downloadable toolkit designed to help healthcare workers have conversations about cost and medical debt with their patients.

“Our toolkit lays the groundwork to not only help clinicians assist their patients in avoiding the unjust burden of medical debt, but it also encourages clinicians to leverage their expertise and lived experience to champion upstream solutions to stymie the creation of unpayable medical debts to begin with,” said Eva Stahl, Undue Medical Debt’s Vice President of Public Policy and Program Management.

Here’s hoping doctors actually use it. 

How I Set Up My Daily Life To Manage Chronic Pain

By Crystal Lindell

I’ve been dealing with severe chronic pain for more than a decade now, most of which is due to the intercostal neuralgia I have in my ribs. So, at this point, my entire life is basically set up to accommodate that. 

While some people may read that paragraph and assume that I have a sad life consumed by pain, I prefer to think of it as my way of fighting back. 

By planning for and accepting my pain, I can live without added stress and burdens. As a result, I don’t let my pain lead – instead I get to lead my pain. 

My daily schedule is flexible, so that I can adjust it to my pain as I’m able, doing more when I can and resting when I need to. I keep things as stress-free as possible because stress escalates my pain. And I try to work with my body instead of against it. 

So what does that look like on a typical day in my life?

Well, I usually wake up for the first time at around 4:30 am to the sound of my orange cat Goose screaming at the top of his lungs because he’s hungry. I take a second to see how much my back hurts today and decide the best method for getting out of bed. My goal is always to get out of bed without needing help from my fiancé Chris.

Then I go to the kitchen to feed Goose and our other three cats – Princess D, Basil, and Goldie. I love them, so they get wet food before I even eat my own morning breakfast: Two Advil; one pain pill; a spoonful of kratom washed down with orange Gatorade; and a cup of hot coffee. 

I go to sleep at about 8 pm most nights, so I check my phone first thing to catch up on any messages I get from loved ones overnight. I also throw the news on our TV so I can catch up on the slew of horrible things that likely happened in the world overnight. 

After “breakfast” I lay out a yoga mat and grab my pillow so I can lay on the floor for a bit as the news continues in the background. There’s something about laying on the ground that helps alleviate the vicious back pain I’ve been dealing with ever since throwing out my back a few weeks ago.

Anytime I try to skip this new floor ritual, I regret it, so I have now built it into my daily schedule to stare at the ceiling multiple times a day. Our black cat Basil always curiously crawls around my head wondering what I’m doing in her realm of the house – the floor. 

Then I get the food dishes ready for the outside cats that I take care of and run those outside to help them survive the long, cold Midwest winter. 

Depending on how busy my day ahead is, I’ll then sometimes lay down for another hour or so while letting my morning medication cocktail kick in. 

When I get back up, I make another cup of coffee, which usually ends up sitting half-finished on our coffee table until it gets cold and I give up on it. Despite the fact that this happens almost every day, I still keep making that second cup of coffee thinking today will be the day I finally finish it.

I don’t work full time in large part due to my health, so I don’t have to get ready to leave the house most days. But that doesn’t mean I just sit around watching TikTok all day. I make ends meet by doing freelance writing work, and by running an online Lego store with Chris via a website called Bricklink. 

If I have writing assignments due, I start mulling that over in my brain, while simultaneously checking in on our Bricklink store to see if any orders came in overnight. Chris handles most of the packing and shipping, but if we are especially busy, I jump in and help pull orders. 

Because my rib pain gets worse the longer I’m awake, I also try to cook any food for the day in the morning because cooking is a very draining task in and of itself. That means I’ll often start a pot of soup or a casserole by 9 a.m. Personally, I actually like dinner food for breakfast, so depending on how long that takes to make, I’ll generally have a serving to start my day. 

I also try to make double batches of any meals, and then freeze them in a portion-size silicone ice cube tray to essentially make my own homemade frozen dinners. That way, when I’m having an especially bad pain day, I have quick meal options. 

After cooking, I head to my couch and figure out the rest of my plans for the day.

This time of year, when the temperatures here in northern Illinois are almost always below freezing, I do a lot of life from my couch under a heated blanket, with our long-hair tortoiseshell cat Princess D on my shoulder. 

Sometimes that means I even do some writing directly on my phone, if I’m in too much pain to pull out my laptop. 

After a few hours of work, I usually have another round of ibuprofen, prescription pain meds, and kratom in the afternoon with my lunch, which is often another serving of whatever food I made that morning. 

CRYSTAL AND PRINCESS D

Then I’ll try to shower. I don’t know if it’s because of the way that I have to move my arms to wash my hair or because there’s just a lot of standing involved, but showers genuinely wipe me out, so I have to set aside time to both take a shower and then recover for a bit on the couch.  After I get dressed, I have to lay on the floor again for about 15 minutes for my back. 

Most days I wear extremely comfortable clothing because I can’t risk any additional discomfort to my ailing body. So if I’m staying home for the day I’ll just directly opt for pajamas, but if I’m visiting my mom — who lives a couple blocks away — I’ll throw on some lounge pants and T-shirt.

In both cases though, I’ll also throw on some compression socks just to keep my feet from swelling up because of all the ibuprofen I take. 

I’ll also throw on some very light makeup just to give myself a little pick me up. Then, I will often run over to my mom’s house to drop off some food for her and my grandma to eat for dinner.

After I get home, I’ll spend time catching up on social media, which helps me feel like I have a social life despite the fact that I spend most of my time at home. 

I also am still trying to avoid catching COVID because I don’t want to risk adding to my health issues, so I limit my time at large social gatherings as much as possible. That means most of my communication with loved ones is via text and the occasional FaceTime call. 

So I take some time in the later afternoon on the couch, while Chris rubs my feet, to catch up with people I care about while also playing the daily New York Times Connections and Wordle Games. 

Part of running the Bricklink store means that, aside from pulling orders, our other big task is adding Lego parts to our inventory, so I try to work on that in the evening before feeding the cats dinner and then winding down the night. 

Then, like I said, I’m in bed by about 8 pm because dealing with chronic pain is exhausting. So after one last round of Advil, pain medication, and kratom, I’ll get under the heated blanket in our bed and scroll social media on my phone for a bit before falling asleep with our tabby cat Goldie cuddled up next to my head.

I could see how a healthy person might read this day-in-the-life story and come away thinking I have a pretty plain existence. But I love spending my days in my cozy, small-town apartment, cuddling my cats on-demand and running an online Lego store with my fiancé. 

It’s back when I was trying to pretend that pain didn’t exist that I was miserable, constantly overdoing it, and ending up either in the emergency room sobbing in pain, or at home awake all night with pain-somnia. 

Pain forces you to go with the flow, to embrace the world as it is and work with it, instead of against it. It’s only when I accepted that fact, that I found true happiness. 

Note: Pain News Network makes a small commission on any Amazon links in this article. 

Trump’s Early Moves Could Raise Drug Costs and Reduce Insurance Coverage

By Julie Appleby and Stephanie Armour, KFF Health News

President Donald Trump’s early actions on health care signal his likely intention to wipe away some Biden-era programs to lower drug costs and expand coverage under public insurance programs.

The orders he issued soon after reentering the White House have policymakers, health care executives, and patient advocates trying to read the tea leaves to determine what’s to come. The directives, while less expansive than orders he issued at the beginning of his first term, provide a possible road map that health researchers say could increase the number of uninsured Americans and weaken safety-net protections for low-income people.

However, Trump’s initial orders will have little immediate impact. His administration will have to take further regulatory steps to fully reverse Biden’s policies, and the actions left unclear the direction the new president aims to steer the U.S. health care system.

“Everyone is looking for signals on what Trump might do on a host of health issues. On the early EOs, Trump doesn’t show his cards,” said Larry Levitt, executive vice president for health policy at KFF, the health policy research, polling, and news organization that includes KFF Health News.

A flurry of executive orders and other actions Trump issued on his first day back in office included rescinding directives by his predecessor, former President Joe Biden, that had promoted lowering drug costs and expanding coverage under the Affordable Care Act and Medicaid.

Executive orders “as a general matter are nothing more than gussied up internal memoranda saying, ‘Hey, agency, could you do something?’” said Nicholas Bagley, a law professor at the University of Michigan. “There may be reason to be concerned, but it’s down the line.”

That’s because making changes to established law like the ACA or programs like Medicaid generally requires new rulemaking or congressional action, either of which could take months.

Trump has yet to win Senate confirmation for any of his picks to lead federal health agencies, including Robert F. Kennedy Jr., the anti-vaccine activist and former Democratic presidential candidate he has nominated the lead the Department of Health and Human Services. On Monday, he appointed Dorothy Fink, a physician who directs the HHS Office on Women’s Health, as acting secretary for the department.

During Biden’s term, his administration did implement changes consistent with his health orders, including lengthening the enrollment period for the ACA, increasing funding for groups that help people enroll, and supporting the Inflation Reduction Act, which boosted subsidies to help people buy coverage. After falling during the Trump administration, enrollment in ACA plans soared under Biden, hitting record highs each year. More than 24 million people are enrolled in ACA plans for 2025.

The drug order Trump rescinded called on the Centers for Medicare & Medicaid Services to test ways to lower drug costs, such as setting a flat $2 copay for some generic drugs in Medicare, the health program for people 65 and older, and having states try to get better prices by banding together to buy certain expensive cell and gene therapies.

That might indicate Trump expects to do less on drug pricing this term or even roll back drug price negotiation in Medicare.

The White House did not respond to a request for comment.

Biden’s experiments in lowering drug prices didn’t fully get off the ground, said Joseph Antos of the American Enterprise Institute, a right-leaning research group. Antos said he’s a bit puzzled by Trump’s executive order ending the pilot programs, given that he has backed the idea of tying drug costs in the U.S. to lower prices paid by other nations.

“As you know, Trump is a big fan of that,” Antos said. “Lowering drug prices is an easy thing for people to identify with.”

In other moves, Trump also rescinded Biden orders on racial and gender equity and issued an order asserting that there are only two sexes, male and female. HHS under the Biden administration supported gender-affirming health care for transgender people and provided guidance on civil rights protections for transgender youths. Trump’s missive on gender has intensified concerns within the LGBTQ+ community that he will seek to restrict such care.

“The administration has forecast that it will fail to protect and will seek to discriminate against transgender people and anyone else it considers an ‘other,’” said Omar Gonzalez-Pagan, senior counsel and health care strategist at Lambda Legal, a civil rights advocacy group.

“We stand ready to respond to the administration’s discriminatory acts, as we have previously done to much success, and to defend the ability of transgender people to access the care that they need, including through Medicaid and Medicare.”

Trump also halted new regulations that were under development until they are reviewed by the new administration. He could abandon some proposals that were yet to be finalized by the Biden administration, including expanded coverage of anti-obesity medications through Medicare and Medicaid and a rule that would limit nicotine levels in tobacco products, Katie Keith, a Georgetown University professor who was deputy director of the White House Gender Policy Council under Biden, wrote in an article for Health Affairs Forefront.

“Interestingly, he did not disturb President Biden’s three executive orders and a presidential memorandum on reproductive health care,” she wrote.

However, Trump instructed top brass in his administration to look for additional orders or memorandums to rescind. (He revoked the Biden order that created the Gender Policy Council.)

Democrats criticized Trump’s health actions. A spokesman for the Democratic National Committee, Alex Floyd, said in a statement that “Trump is again proving that he lied to the American people and doesn’t care about lowering costs — only what’s best for himself and his ultra-rich friends.”

Medicaid Cuts

Trump’s decision to end a Biden-era executive order aimed at improving the ACA and Medicaid probably portends coming cuts and changes to both programs, some policy experts say. His administration previously opened the door to work requirements in Medicaid — the federal-state program for low-income adults, children, and people with disabilities — and previously issued guidance enabling states to cap federal Medicaid funding. Medicaid and the related Children’s Health Insurance Program cover more than 79 million people.

“Medicaid will be a focus because it’s become so sprawling,” said Chris Pope, a senior fellow at the Manhattan Institute, a conservative policy group. “It’s grown after the pandemic. Provisions have expanded, such as using social determinants of health.”

The administration may reevaluate steps taken by the Biden administration to allow Medicaid to pay for everyday expenses some states have argued affect its beneficiaries’ health, including air conditioners, meals, and housing.

One of Trump’s directives orders agencies to deliver emergency price relief and “eliminate unnecessary administrative expenses and rent-seeking practices that increase healthcare costs.” (Rent-seeking is an economic concept describing efforts to exploit the political system for financial gain without creating other benefits for society.)

“It is not clear what this refers to, and it will be interesting to see how agencies respond,” Keith wrote in her Health Affairs article.

Policy experts like Edwin Park at Georgetown University have also noted that, separately, Republicans are working on budget proposals that could lead to large cuts in Medicaid funding, in part to pay for tax cuts.

Sarah Lueck, vice president for health policy at the Center on Budget and Policy Priorities, a left-leaning research group, also pointed to Congress: “On one hand, what we see coming from the executive orders by Trump is important because it shows us the direction they are going with policy changes. But the other track is that on the Hill, there are active conversations about what goes into budget legislation. They are considering some pretty huge cuts to Medicaid.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

How Vaccine Misinformation Distorts Science

By Mark O'Brian

Vaccinations provide significant protection for the public against infectious diseases and substantially reduce health care costs. Therefore, it is noteworthy that President-elect Donald Trump wants Robert F. Kennedy Jr., a leading critic of childhood vaccination, to be secretary of Health and Human Services.

Doctors, scientists and public health researchers have expressed concerns that Kennedy would turn his views into policies that could undermine public health. As a case in point, news reports have highlighted how Kennedy’s lawyer, Aaron Siri, has in recent years petitioned the Food and Drug Administration to withdraw or suspend approval of numerous vaccines over alleged safety concerns.

I am a biochemist and molecular biologist studying the roles microbes play in health and disease. I also teach medical students and am interested in how the public understands science.

Here are some facts about vaccines that Kennedy and Siri get wrong:

Vaccines Don’t Cause Autism

Public health data from 1974 to the present conclude that vaccines have saved at least 154 million lives worldwide over the past 50 years. Vaccines are also continually monitored for safety in the U.S.

Nevertheless, the false claim that vaccines cause autism persists despite study after study of large populations throughout the world showing no causal link between them.

Claims about the dangers of vaccines often come from misrepresenting scientific research papers. In an interview with podcaster Joe Rogan, Kennedy incorrectly cited studies allegedly showing vaccines cause massive brain inflammation in laboratory monkeys, and that the hepatitis B vaccine increases autism rates in children by over 1,000-fold compared with unvaccinated kids. Those studies make no such claims.

In the same interview, Kennedy also made the unusual claim that a 2002 vaccine study included a control group of children 6 months of age and younger who were fed mercury-contaminated tuna sandwiches. No sandwiches are mentioned in that study.

Similarly, Siri filed a petition in 2022 to withdraw approval of a polio vaccine based on alleged safety concerns. The vaccine in question is made from an inactivated form of the polio virus, which is safer than the previously used live attenuated vaccine.

The inactivated vaccine is made from polio virus cultured in the Vero cell line, a type of cell that researchers have been safely using for various medical applications since 1962. While the petition uses provocative language comparing this cell line to cancer cells, it does not claim that it causes cancer.

Vaccines Undergo Clinical Trials

Clinical trials for vaccines and other drugs are blinded, randomized and placebo-controlled studies. For a vaccine trial, this means that participants are randomly divided into one group that receives the vaccine and a second group that receives a placebo saline solution. The researchers carrying out the study, and sometimes the participants themselves, do not know who has received the vaccine or the placebo until the study has finished. This eliminates bias.

Results are published in the public domain. For example, vaccine trial data for COVID-19, human papilloma virus, rotavirus and hepatitis B are available for anyone to access.

Aluminum Boosts Immunity

Kennedy is co-counsel with a law firm that is suing the pharmaceutical company Merck based in part on the unfounded assertion that the aluminum in one of its vaccines causes neurological disease. Aluminum is added to many vaccines as an adjuvant to strengthen the body’s immune response to the vaccine, thereby enhancing the body’s defense against the targeted microbe.

The law firm’s claim is based on a 2020 report showing that brain tissue from some patients with Alzheimer’s disease, autism and multiple sclerosis have elevated levels of aluminum. The authors of that study do not assert that vaccines are the source of the aluminum, and vaccines are unlikely to be the culprit.

Notably, the brain samples analyzed in that study were from 47- to 105-year-old patients. Most people are exposed to aluminum primarily through their diets, and aluminum is eliminated from the body within days. Therefore, aluminum exposure from childhood vaccines is not expected to persist in those patients.

Ironically, Kennedy’s lawyer, Siri, wants the FDA to withdraw some vaccines for containing less aluminum than stated by the manufacturer.

Vaccine Manufacturers Can Be Held Liable

Kennedy’s lawsuit against Merck contradicts his insistence that vaccine manufacturers are fully immune from litigation.

His claim is based on an incorrect interpretation of the National Vaccine Injury Compensation Program, or VICP. The VICP is a no-fault federal program created to reduce frivolous lawsuits against vaccine manufacturers, which threaten to cause vaccine shortages and a resurgence of vaccine-preventable disease.

A person claiming injury from a vaccine can petition the U.S. Court of Federal Claims through the VICP for monetary compensation. If the VICP petition is denied, the claimant can then sue the vaccine manufacturer.

The majority of cases resolved under the VICP end in a negotiated settlement between parties without establishing that a vaccine was the cause of the claimed injury. Kennedy and his law firm have incorrectly used the payouts under the VICP to assert that vaccines are unsafe.

The VICP gets the vaccine manufacturer off the hook only if it has complied with all requirements of the Federal Food, Drug and Cosmetic Act and exercised due care. It does not protect the vaccine maker from claims of fraud or withholding information regarding the safety or efficacy of the vaccine during its development or after approval.

Good Nutrition Is Not a Substitute for Vaccination

Kennedy asserts that populations with adequate nutrition do not need vaccines to avoid infectious diseases. While it is clear that improvements in nutrition, sanitation, water treatment, food safety and public health measures have played important roles in reducing deaths and severe complications from infectious diseases, these factors do not eliminate the need for vaccines.

After World War II, the U.S. was a wealthy nation with substantial health-related infrastructure. Yet, Americans reported an average of 1 million cases per year of now-preventable infectious diseases.

Vaccines introduced or expanded in the 1950s and 1960s against diseases like diphtheria, pertussis, tetanus, measles, polio, mumps, rubella and Haemophilus influenza B have resulted in the near or complete eradication of those diseases.

It’s easy to forget why many infectious diseases are rarely encountered today: The success of vaccines does not always tell its own story. RFK Jr.’s potential ascent to the role of secretary of Health and Human Services will offer up ample opportunities to retell this story and counter misinformation.

Mark R. O'Brian, PhD, is a Professor and Chair of Biochemistry at the University at Buffalo. His research is focused on understanding how microbes regulate cellular processes relevant to agriculture, human health and disease.

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

FDA Approved Genetic Test for Opioid Use Disorder Is Flawed

By Crystal Lindell

An FDA-approved test that claims it can identify genetic risk for opioid use disorder (OUD) is so flawed as to basically be useless – at least according to a new study published in JAMA.

The genetic test, which is sold under the brand name “AvertD” by AutoGenomics, was given approval by the Food and Drug Administration in 2023. The test claims it can use 15 genetic variants to identify people at risk for misusing opioids. 

According to AutoGenomics, the variants “may be associated with an elevated genetic risk for developing OUD.” However, the company provides no citations to support the associations between the brain reward pathways and OUD — meaning the test’s foundation itself seems to be flawed.

However, the authors took the premise of the AvertD test seriously, and set out to find if it could actually predict OUD. They looked at a diverse sample of more than 450,000 “opioid-exposed individuals” (including 33,669 individuals with OUD), and found no evidence to support the use of the AvertD test. 

Specifically, they found both high rates of false positives and false negatives, with 47 out of 100 predicated cases or controls being incorrect. 

“Notably, clinicians could better predict OUD risk using an individual’s age and sex than the 15 genetic variants,” researchers said.

The fact that the test doesn’t seem to work could have dangerous consequences for pain patients. The fear is that they will be used to deny patients opioid medications simply because their “genetic markers” show them to be in a high-risk patient group. 

The study authors directly point this out, writing: “False-positive findings can contribute to stigma, cause patients undue concern, and bias health care decisions.”

They also point out the potential harms of a false-negative finding, which "could give patients and prescribers a false sense of security regarding opioid use and lead to inadequate treatment plans."

The fact that this genetic test has gotten as far as it has raises questions about the FDA approval process. 

The problems don’t stop there though. Another major flaw in both the study and the genetic testing is that “Opioid Use Disorder” has such murky diagnostic criteria, that it’s difficult to take it seriously. It’s basically a set of vague symptoms, as opposed to a clear-cut diagnosis, despite what some have been led to believe. 

A CDC fact sheet for OUD Diagnostic Criteria is a mishmash of vague symptoms, such as tolerance and withdrawal, that could just be the result of untreated or poorly treated physical pain. 

Things like “taking opioids in larger amounts or over a longer period of time than intended” and “having a persistent desire or unsuccessful attempts to reduce or control opioid use.”

The CDC also lists "withdrawal symptoms" as one of the diagnostic criteria for OUD, which is something that people can experience from rapid tapering without having OUD.

The CDC then includes the odd disclaimer that “tolerance and withdrawal are not considered” when opioids are taken under appropriate medical supervision.

So in a country that does not guarantee healthcare, you can avoid an OUD diagnosis if you can afford to find a doctor willing to prescribe opioids to you. But if you can’t find a doctor or abandoned by one — and then have withdrawal symptoms — you must have a disorder.

That doesn’t sound like a medical diagnosis to me. That sounds like classism.

A patient needs just to have just two of the OUD criteria to have “mild OUD” – a benchmark that has the sweeping effect of including a large number of patients taking opioids for chronic pain. 

It’s no wonder that a genetic test claiming to be able to predict OUD would be so flawed, given how flawed the diagnosis of OUD is to begin with. 

Perhaps instead of trying to guess potential risks for a vague disorder, the FDA should be focused on treatments already proven effective for people who want to stop their opioid use, like expanding methadone access. 

The whole situation reminds me of the Tom Cruise-movie Minority Report, a futuristic thriller in which a specialized police department called Precrime “apprehends criminals by use of foreknowledge provided by three psychics.”

Denying people pain medication based on a flawed genetic test that falsely claims it can predict the future is basically the same thing. And it’s just as evil in real life as it is in the movie.  

Why Life With Chronic Pain Makes Every New Ache Extra Terrifying

By Crystal Lindell

Late Sunday night, while putting freshly cleaned sheets onto my bed, I twisted a little weird and threw out my back.

By Monday morning, the pain was so debilitating that I was sobbing as my fiancé tried to help me out of our bed. But beyond dealing with the immediate physical pain, I was also terrified of the future.

As a chronic pain patient, every time I get any new illness or affliction I worry that it will become what the rib pain I woke up with in 2013 became: Permanent. 

When you develop chronic health issues of any sort, you lose one of the healthy population’s greatest luxuries: The ability to assume that you’ll eventually get better. 

Thankfully, I seem to be recovering from this flare up of back pain. Three days after the initial onset, I’m able to lift myself out of bed, and even do some light cooking in the kitchen. 

This is the first time I’ve ever experienced any type of severe back pain like this though, and I had been very stressed that my back would never recover.

This isn’t the first time I’ve faced this fear. 

When I had a bad case of COVID in 2022, I spent the first few nights awake with the most severe cold-related muscle aches I’d ever experienced.

In my fever state, I frantically Googled to see if this was a symptom that could become permanent. I was petrified that my body was just broken like this forever. Thankfully it wasn’t, but I know all too well that there’s no guarantee of recovery when it comes to the human body.

It’s not just my health I worry about either. 

Anytime a loved one tells me about a chest cold, some new joint pain, or any type of new health issue, I panic that their body will never recover. Or worse, what if it kills them?

This fear has only been made worse since 2020, when COVID, which first presents as cold symptoms, started spreading. In the years since it has killed multiple people I knew. 

Now anytime anyone I know develops so much as a sore throat, I worry that they’re going to die.

I keep this to myself because there’s nothing to be gained by spreading my worry to them, but I worry nonetheless. I know firsthand how fragile our bodies are, how delicate our health truly is. I am all too aware of the fact that any of us can lose it at any time. 

As I've been enduring the new back pain all week, cursing myself for taking my ability to bend over for granted, I’ve thought a lot about my late-father, who died from COVID in 2022. 

I have vivid memories of him throwing his back multiple times throughout my childhood. Now that it has happened to me, I’ve realized that I didn’t spend nearly enough time asking him how he coped with it, and then seemingly got past it. 

My dad’s back was so bad that he was walking with a cane at age 35, when my younger brother was born in 1989. But the cane was gone within a few years and I don’t remember him needing it again after that. 

Talking with my brother this week, he told me our dad blamed his back pain on driving a truck for a living, a profession he eventually gave up so he could pursue computer programming. So, I assume it was the career change that alleviated his back pain. But now that he’s dead, I’ll never really know for sure how he healed his back, or if he even really did.

My late-grandfather on my mother’s side also spent decades of his life battling seemingly untreatable back pain. He passed away when I was a toddler, but stories about his back pain continued long past his death. 

Now, as an adult, I suspect he was one of the links in the genetic Ehlers-Danlos chain that we now know runs along my mom’s side of the family. We both battled the same condition, but he’ll never know that.

Pain is always bad, but as our bodies age in the same ways our parents, and their parents before them have, it does have one small, silver lining: It can help us connect to our ancestors in new ways, helping us more fully grasp the lives they lived before us. 

After battling this back pain flare up this week, I have a new appreciation for how much pain my dad and my grandfather must have endured due to their back problems, and a more fully developed sense of empathy for their troubles. 

So while I will continue to worry that every new health issue will become permanent, including my new back pain, I can take small comfort in knowing that even if that’s the case, enduring it just makes me part of a long line of my ancestors who’ve endured the same before me. 

Human beings suffer, but when we suffer together, it does tend to alleviate our sorrows ever so slightly. 

How Do We Decide Which Drugs Are Bad and Which Ones Are Good?

By Crystal Lindell

I was in elementary school during the height of the original DARE campaign. I vividly remember fully uniformed police officers coming into my classrooms to share the Drug Abuse Resistance Education’s program’s very direct message: “DARE to say no to drugs!”

My friends and I all got free black T-shirts with the bold red DARE slogan splashed across it, and every year we signed a pledge promising to never use drugs.  

What qualified something as a “drug” was a little more difficult to discern though. 

Back in the 1990s there was a lot of talk about “pot” and “dope,” so I figured those were both bad, although as a 10-year-old living in a pre-Google world, I didn’t really know what either one was and I didn’t know how to find out.

I also remember lots of conversations about alcohol and cigarettes, but those were apparently only “drugs” if you were under a certain age, seeing as how a lot of adults I knew used them. 

How effective DARE was is still hotly debated, but there is one part that seems to have left a lasting legacy: Most Americans still think anything labeled as a “drug” by cops is inherently bad and must therefore be greatly restricted and regulated.  

Now that I’m in my 40s, I am much less accepting of the blanket “drugs are bad” messages that law enforcement agencies spread to my peers and me back in the day. 

As it turns out, “drugs” can mean a lot of things, and the reasons we are given for why some are bad and some are good are murky at best. 

If you ask most adults in the United States to define “drugs,” they’ll often reach for whatever legal categories the police have neatly provided. Opioids and stimulants are “drugs” because they are heavily regulated, but NSAIDS and acetaminophen aren’t because you can buy them over the counter at Walgreens. 

If you push them to consider the definition beyond what law enforcement has provided, they’ll usually go right to “things that are addictive.” If you point out that caffeine is extremely addictive though, they’ll shrug that off with “well that’s different.” 

I’ll also often hear people defend their morning latte with something along the lines of “well nobody’s ever resorted to sex work to buy an espresso," as though that in and of itself makes coffee superior to a morning Adderall. 

Aside from the fact that this logic shames sex workers, it also leaves out the very important reason that people don’t have to resort to extremes to access coffee: Caffeine is legally sold over the counter. 

If medications like hydrocodone or Adderall were sold in the same way as your morning coffee, they would also be cheap, safe and easily available – and thus people wouldn’t have to resort to extremes to be able to afford them. 

Beyond that, we also have decided, as a culture, that lots of very addictive things should be sold over the counter. 

In addition to coffee, adults can purchase alcohol and nicotine with no problem, despite how deadly both of those are. What makes them different from Adderall or even Oxycontin? Have you ever really considered the question? 

If anything, don't drunk driving and second-hand smoke potentially make alcohol and nicotine worse, since there’s so much danger to non-users?

Personally, as a pain patient who has also seen many loved ones suffer as a result of an onslaught of opioid-phobic regulations over the last decade, I will admit to having been radicalized on this issue. 

I think most of the drug laws we have on the books are far too restrictive, and most substances should be sold the same way alcohol and coffee are: Over the counter. 

However, I can appreciate the fact that this is a radical position in the United States. After all, we’ve all been subjected to heavy anti-drug propaganda for decades now, going back to Nancy Reagan first telling kids to “Just Say No” way back in 1982. 

I’d encourage you to think critically about such a simplistic slogan though. When it comes to which substances people want to consume and why, it’s not quite so easy to know when a drug is bad and when it’s good. 

In fact, I have a saying of my own that I like to share during conversations about drug legalization. I believe people use the drugs they need and, absent that, they’ll use the drugs they have access to.

So if a drug is something you need, is it really something you should “Just say no” to?

A Pained Life: How Are You Feeling?

By Carol Levy

When I meet someone on the street, we do the perfunctory, “Hi, how are you?” and the expected reply, “Fine thanks. And you?”

If it's a really good friend, we may start to have a true conversation about how we really feel: “Well, you know I've been going through a tough time lately.”

The friend may nod her head in understanding and say, “Oh I'm so sorry. Let's talk about it.” And then we do.

It’s different when I'm at my neurosurgeon or neurologist's office. When the doctor enters the exam room, he’ll usually say, “Hi Carol, how are you?” I reply, “Fine thanks. And you?”

My question to him is ignored. Unlike my friend, his response is not to ask, "No, Carol. How are you feeling? How is your pain affecting you?”

Instead, we go directly to clinical questions like, “Has your pain changed in any way?” or "Are the medications helping you any?”

In my last column, I wrote about wanting doctors to be able to feel what we feel, and to understand what it’s like to have the levels of pain that we endure. Too often, their words and actions indicate they truly don't understand or care.

A few days after I wrote that column, I was in my family doctor's office. We did the “How are you?" thing. He then asked me why I was there.

"I saw some bad blood work results on another doctor's patient portal,” I said. “It's been 2 months. I assumed she didn't call me because the results were good. But now that I saw them, I want to know what they mean." 

“Well,” he started off, “We see thousands of patients and we can't remember to follow through on all of them. You should have called her." 

If that was intended to make me feel small, he succeeded.

“Yes, your cholesterol is terrible You have to take statins,” he said. I told him I didn’t like statins. He didn't ask me why, but warned, “If you don't, you'll have a heart attack.”

My life has been hard, the chronic pain making it a gazillion times harder. I am virtually alone, which makes my life worse. “I don't have an interest in extending my life,” I said. 

I didn't say that to get sympathy. It's my reality. I did, however, expect a response --- a grimace, a nod of the head, or some words of concern or care. None were forthcoming. Instead, he ignored my comment.

When I asked about the risks of statins, he ignored that too, repeating what seemed like a scare tactic: “You'll have a heart attack.”

Had he heard and listened to my words, he would have realized that was not going to have an effect on me.

I had a few other issues. Each one was met with a quick one or two-word answer. I asked him for prednisone, a steroid, as it had previously helped my sciatica. “No,” was his response.

I explained how prednisone helped me before, and that I wanted some in the house for the times when the sciatica gets bad. “I don't want you taking a steroid every day,” he replied.

I hadn't asked or indicated that I wanted to take it daily. He just came to his own conclusion. I explained again that I only wanted it for the “just in case” days. Unhappily, based on his expression, he agreed.

Then the appointment ended. I turned away for a second to get my purse.  When I turned back, he was out the door. Without even a goodbye.

Not once did he ask, “How are you? How are you emotionally? How are these issues affecting you? How are you doing with your pain?”

As I thought about his indifference to me, a person with emotions and feelings, I thought about all of the doctors I’ve seen since my trigeminal neuralgia and chronic pain started. Sadly, I could only think of two out of 20 or more who actually cared about how I was, the emotional, psychological me.

I know every doctor, like every person, has felt what I felt. Not necessarily the depths of despair some of us feel about having pain, or the fear that we have on a good day that the pain is just lurking around the corner. No one is immune from those thoughts.

So many articles have posited that those of us with chronic pain have psychological issues stemming from prior events, such as childhood trauma, that caused our pain and disabilities. 

How am I feeling, doctor? Ask me. It may help you to understand me, my pain, and my other medical issues. And, just by asking, you may be able to help yourself be a better doctor.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here. 

Response to CEO Murder Shows Depth of Frustration with Health Insurers

By Simon Haeder

The U.S. health care system leaves much to be desired.

It is convoluted, fragmented, complex and confusing. Experts have also raised concerns about quality, and disparities are rampant. And, of course, it is excessively costly – far more so than in any other developed nation. Given these failings, it is not surprising that Americans are unhappy with their health care system.

As the public reaction to the killing of UnitedHealthcare CEO Brian Thompson has made clear, however, many Americans are perhaps most unhappy with their health insurers. Indeed, just 31% of Americans have a favorable view of the health insurance industry, according to a 2024 survey.

Yet, given the recent tragic events, as a health policy scholar, I think it would be prudent to take a step back and reflect on the broader health care system and how the U.S. got to this point.

Patchwork Healthcare

Few with any personal experience or professional expertise would describe U.S. health care as the gold standard of health care systems.

For a number of historical and political reasons, it is barely a “system” but rather a complex patchwork with countless different approaches to covering the costs of health care that include splitting the costs between individuals, employers and governments.

Governments also extensively regulate health and health care and, although in a diminished role today, serve as the providers of care through state and county hospitals as well as the Veterans Health Administration.

The result is a regulatory amalgam made up of countless entities. The Affordable Care Act reforms only added additional layers of laws and regulations to an already complex framework.

Yet, even beyond this general structure, Americans face many challenges. Indeed, no other health care system in the world is pricier. This involves costs for medical services but also extremely high administrative costs. Pharmaceuticals are just one example of the excessive financial burden carried by Americans.

For many Americans, these costs are too high, with an estimated 530,000 medical bankruptcies annually.

And despite that high price, concerns persist about quality and access.

In addition, the system tends to be highly inequitable and subject to countless disparities that make it harder for many poorer, rural and nonwhite Americans to access care.

The Role of Insurers

In the United States, insurers play a crucial role in connecting – and at times disconnecting – patients with the care they require.

They are also at the forefront of many of the starkest frustrations that Americans experience – even the ones they are not directly responsible for. While medical providers and pharmaceutical companies charge the world’s highest prices, it is generally up to insurers to tell patients how much they still have to pay or that their care won’t be covered. Insurers are also the ones who determine whether a drug is not covered or a doctor is “out of network,” meaning patients can’t get the specific treatment or care they desire.

To be sure, insurers are not just the messenger – they also add to many of the frustrations patients experience every day. For example, a patient may have to travel very far or wait a long time for an appointment if their provider network is too narrow or simply does not have enough providers. Moreover, the directories and searches that insurers use to show what providers are “in network” may be inaccurate, as they rarely get updated.

For many individuals, this can mean delayed or forgone care, which has major implications for their health and finances. For some, it can even lead to preventable deaths.

Some of the practices insurers are most infamous for, such as rescinding coverage over minor clerical issues and refusing to cover preexisting conditions, ended under the ACA. But some of these issues could return if the incoming Trump administration seeks to undo some of the ACA’s protections.

Even today, so called short-term, limited-duration health plans promise good coverage for lower premiums, but even basic items may not be covered. Many plans, for example, do not cover prescription drugs or even hospital emergency rooms.

Blame the System, Not Just Insurers

Why do insurers act the way they do? For many, the answer may seem simple: to make money. This, of course, rings true – insurers in the U.S. rake in billions of dollar. However, while they tend to be profitable, their margins generally range only from 3% to 5%.

But the story is more complicated than that. With government power limited, insurers are perhaps the only force in the U.S. health care industry trying to rein in rising costs in a health care system where everyone seeks to maximize their profits.

That means insurers take on the role of bad cop, doing things such as limiting access to certain care or doctors. But there are several prudent reasons for doing so; for instance, it’s in the public’s best interest when insurers do not cover drugs that have been shown ineffective or of low quality. And ultimately this does keep premiums lower than they would otherwise be. Of course, insurers and their CEOs profit handsomely in the process. And at times, their methods are ethically and legally questionable.

Ultimately, many if not most of the frustrations Americans experience with health care have their origins in a poorly designed system that is highly inefficient and offers countless opportunities for profit. Yet insurers are only one – perhaps the most visible – part of that broken system.

Simon F. Haeder, PhD, is an Associate Professor of Public Health in the Department of Health Policy & Management in the School of Public Health at Texas A&M University. His most recent work has focused on the implementation of the Affordable Care Act, provider networks, and regulatory policymaking at the Office of Management and Budget.

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

Should We Diagnose Random Strangers on the Internet?

By Crystal Lindell

I need to say something that is considered controversial in the online chronic illness community: I actually think that we should diagnose random strangers on the internet.

At least sometimes. 

I know, I know. This is the kind of thing most people in the chronic illness community rally against. It’s frowned upon and quickly policed anytime it comes up. 

If you so much as hint that someone with overextended elbows in an Instagram Reel video could have Ehlers-Danlo syndrome (EDS), you’ll get swarmed with comments along the lines of “Don’t diagnose random strangers on the internet!”

But I’m coming to this topic from my own personal experience of being correctly diagnosed by random strangers on the internet. 

After I started writing about my health issues online, readers emailed me to say that they thought I might have EDS. I then took that information to my doctors, who eventually diagnosed me. 

Despite the fact that all of my joints very clearly overextend and that multiple doctors had commented on this to me, none of them even mentioned EDS until I brought it up. So, without the random strangers on the internet, there’s a good chance I never would have known that I have EDS. 

It doesn’t stop there though. Because of that chain of events, many of my family members were also diagnosed with EDS. And someday, future generations might be as well. 

That’s a whole family of people finally knowing what has been afflicting us for generations, and finally understanding that all the chronic health issues we’ve experienced are related. 

There’s power in that, but more importantly there are tangible benefits to it. Knowing that we have EDS and that we are likely to pass it on to our children helps us make more informed decisions about our health in countless ways. 

And it’s all because random strangers on the internet diagnosed me. 

I understand that actively writing about my health issues is not the same thing as people posting random videos on all sorts of topics on TikTok. I get that my content was much more open to the idea of health input from strangers. 

But I would argue that this aversion to diagnosing random strangers online can be harmful to patients. It leads to fewer people knowing what’s wrong with them – and more people thinking that whatever is wrong is some kind of moral failing. 

I do get that EDS, especially the hypermobile type, stands out in this conversation because there are very clear visual markers of the disease. But I don’t think we should stop at EDS, especially in the United States where healthcare is a for-profit industry. I’ll even go so far as to say that I consider it mutual aid to offer free medical advice to others online.

It’s not like we as online commenters are doctors who can prescribe medications to people we’ve diagnosed. Merely mentioning to someone that they may have an illness just opens the door for them to look into that diagnosis themselves and to then bring it up with their doctor. Millions of people have done that after consulting with “Dr. Google” online – usually to the chagrin of their actual doctors.

The idea that it is bad to even comment on a public post about health also serves to continue stigmatizing many illnesses. After all, it’s not a bad thing to have EDS, so why would it be a bad thing to mention to someone online that they could have it? 

Many doctors miss very obvious diagnoses because our for-profit healthcare system mandates that they rush patients through appointments. Their egos also tend to dismiss their patients’ descriptions of their health issues. 

Sometimes the best chance we have is actually random strangers on the internet. 

Now obviously, I need to add an important disclaimer here. If someone specifically says that they do not want medical input, you should listen to them. 

But I would also tell people that refusing medical input could be a bad idea. There is a lot of power in crowdsourcing information. And who knows, random strangers on the internet may just figure out what’s going on with your health before your doctor does.