What one med student learned about chronic pain treatment from hundreds of honest, unfiltered responses on Reddit—and why it should change how we train physicians.

Learning about chronic pain is a depressingly low priority for US medical schools, despite the fact that pain is the number one reason that Americans access the health care system and the leading cause of long-term disability in the US.¹ But as patient advocate (and my coworker at U.S. Pain Foundation!) Cindy Steinberg said recently at the 2025 American Academy of Pain Medicine conference, primary care doctors get less than 11 hours of education on pain throughout the entirety of their schooling. Vets– like for your dog– get triple or quadruple that.² And pain medicine specialists? Chronic pain patients have them outnumbered nearly9000:1.³ Good luck.

Those of us with chronic pain often stay quiet or shrink our issues. We’ve all had to get very good at toeing an invisible line, fearing dismissal, stigma and judgment. That’s why I was excited recently to participate in a discussion online where a med student asked Reddit’s chronic pain community “What do you need me to know about chronic pain?”

I’m not sure if they were expecting the absolute flood of emotional, unfiltered, and eye-opening responses that followed. (As they later said, what they learned about chronic pain from Reddit “was a more authentic and raw exposure than what I received in medical school,” where their education on chronic pain didn’t include hearing or interact with any pain patients. ) But online is where the filters come off. It was a rare chance to speak directly to someone who was actually listening—and eager to learn.

white woman in orange sweater against pink background holds both hands to her head as if her head hurt

Our overwhelming message? Please, just believe us.

But I wanted to hear both sides! So I reached out to the original poster, a current med student, to ask for their perspective Let’s dive into why they asked the question, the responses they recieved, and what they learned about chronic pain care. At the very least, they said, “I think this experience has opened me up to wanting to listen more to my patients with curiosity, without dismissiveness.”

(Note: The student did not want me to use their name, so I will use “the med student” or “the OP” in this post. This post involves references to suicide.)

The Prescription Patients Actually Want

on top of an illustration of cupped hands and flowers that looks vaguely like a tattoo or tarot card, title "relationships with chronic pain," text "it's not just about managing pain, it's about managing understanding and support in ways that make your love stronger," janetjay.com — This applies to any type of relationship, really, romantic or not.

Chronic pain patients don’t just want meds! This discussion revealed that the most important things are:

We just want to be believed
We need a care team that communicates with us AND each other
Doctors should ask questions and listen to our answers without presuming or assuming
We deserve a system that sees us as partners in our own care. As one commenter said: “Please be our ally instead of another anxiety-inducing battle we have to fight.”

That kind of honesty can bridge the gap.

From the Shadows to the Spotlight: What Patients Shared

This wasn’t just venting. It was a masterclass in lived experience. Patients opened up about the lifelong impact of pain, the emotional toll, and the invisible battles they fight to be seen, heard, and treated with dignity.

“We mourn who we used to be. Chronic pain is a thief. You lose your job, your hobbies, your social life, your identity.”

The quote graphic below is originally from an essay titled ““Grief in chronic illness. Yep, grief happens there too (and no one’s died).” That really sums it up, tbh. The person I would have been haunted me for a long time.

Back view of a woman's head in front of a cityscape: "People don't often associate chronic illness with grief but the realization that life will never be what it was and the future is not wha tyou thought it would be, is a major loss. Dr. Ingela Thune-boyle, janetjay.com" — *This is from my best quotes about chronic pain, disability & mental health* post. And *check out these quotes about invisible illnesses like fibro or EDS!*

Doctors who work with pain patients may not have an cure or an answer, but at the very least they owe it to us to keep asking questions.

“We’re the ones reading PubMed at 3am because doctors shrug.”

“I had a doctor say straight out that I am sick, so this is my life now. Do not accept that we just have to live like this and do not ever expect us to. Try something. Commit to searching for ideas and options. Continue to educate yourself on the newest advancements. Put in referrals if you hit the edges of your knowledge and education.“

Pain Doesn’t Discriminate (& It Isn’t a Choice)

I spent so long hearing “you’re too young to be in pain” or “you’re too young to be on that many meds” (and yes, I agree, fine, so…???). I heard that right up until the time they started saying “well it’s normal to have aches at your age.”

Pain knows no age. Being young and in pain does not mean we are drug seeking, and it certainly doesn’t mean that we are ‘too young to be in pain.’ 🙁 Please take us seriously.

But when I gained a little weight, suddenly it was the first, main and often only thing doctors wanted to discuss!

Image of a white woman with brown hair wearing blue overalls looking at the camera, below the headline "chronic pain, weight and the challenge of getting through the damn day" and "janetjay.com" under her feet — You’re not alone: it’s incredibly difficult to lose weight while dealing with chronic pain. And weight does not determine your worth.

Don’t fall for the 3 Fs: Just because someone is female, fat, and fifty is not a reason to throw useless “anxiety meds” at her.

Please, please, please don’t jump right to “it’s psychosomatic/ ‘conversion disorder.’” Yes, there’s a lot of interplay between the brain and how we process pain, but I’m depressed because I’m hurting, I’m not hurting because I’m depressed.

“Saying things like, “Maybe you wouldn’t be in pain if you weren’t so depressed and anxious” does not help. Understand that chronic pain tends to make people feel depressed, anxious, hopeless, helpless, etc. And if we weren’t in pain 24/7, our mental health would also improve.“

All we want is a doctor who will hear and believe us

For some of us, pain is so much the house we live in that even an extreme event won’t produce much outward reaction. The screaming is all within.

These words aren’t from textbooks. They’re from real lives.

“Being believed is more important than any prescription.”

“The dismissiveness is worse than the pain.”

“Please believe us, please listen to what we are saying. That is legitimately all I fucking want. Listen to what I am fucking saying, because I’m the one trapped in this awful fucking meatsuit that’s constantly screaming at me that it’s in severe pain.“

Beyond the 1-10 Scale: Counting the Cost of Pain

The 1-10 pain scale fuckin’ sucks, and many of us (rightly) criticized this measurement for its lack of nuance, among other things.

on a pink computer layout in a digital font, text reads "how to use 1-10 pain scales to explain your pain," with a drawing of a woman in another window with her head in her hand and a speech bubble reading "even though it sucks" and at bottom a heart with a speech bubble saying "janetjay.com" — Have I mentioned that 1-10 pain scales suck donkey balls? Well, done and done.

“Ask how pain affects our life, not just our number.”

As I wrote in my essay(/rant) about 1-10 pain scales, “If I truly went by ‘the worst pain ever felt,’ my entire 1-10 scale of pain would have changed after my L5-S1 disc herniated. Does that mean that my 7 is now a 5 because the scale has been stretched? What about everything else? Dear migraine, how do I compare thee to a laminectomy?”

Turns out, I’m not alone.

“My 6 might be someone else’s 9. I live at a 4 or 5 most days, but that doesn’t mean I’m okay. It means I’ve adapted.”

Here’s some not-at-all-shocking news! If you spend most of your time acting like you’re fine to not be a drag on the people around you, it can be hard to turn that off.

I assure you I am in distress…but I have spent my life keeping myself together. I can sit in front of you at a pain level 7, state what is wrong with me and doctors tilt their head and evaluate my demeanor. I can see when they think I don’t understand the pain scale numbers. I do. I understand. My pain looks different…but my pain is still real.

“For some of us, pain is so much the house we live in that even an extreme event won’t produce much outward reaction. The screaming is all within.“

Not only are affect and appearance poor indicators of what’s actually going on, relying on them can disproportionally affect the care given to anyone who presents “differently.” That can be a trap for everyone from racial minorities, AFAB or LGBTQ+ patients to the neurodivergent (and a lot else, too).

Not everyone is good at being a squeaky wheel. Some people cannot express pain in a way that society expects because of things like autism or childhood trauma. They may simply state the degree of their pain without fanfare.

We live in fear that if we say or do the wrong thing, we will just be dismissed and what little help we might be getting will be taken away. We want to be heard and believed, not dismissed or put in a category of drug seeker.

How to Make The Able-Bodied Understand

Chronic pain, especially the constant life-changing kind, can be nearly impossible to explain to someone who hasn’t gone through it. You may have heard of spoon theory (if not, go read it), but some commenters had other analogies:

“The energy levels of someone with chronic pain feels like you’ve got a cell phone with half the battery capacity that everyone else has. You can leave it plugged in charging for twelve hours and when you go to use it, it’s only ever at 50% charged and it drains at twice the speed of everyone else’s.”

“Managing pain is like trying to count backwards from 10,000 every day while also having a conversation, or trying to plan a route, or remember what time your appointment is. It’s technically possible but it’s frustrating and exhausting, and I mess up all the time & have to deal with the consequences, which makes me upset, which makes me tired, which makes it harder to cope with the pain. I don’t want my pain to be consistently zero, I just want to be able to get things done while counting to 10,000 every day. Even if it’s only temporary, offering something that substantially cuts the pain down gives people room to do the lifestyle changes or therapy or whatever you want them to do.“

The message was clear: replace judgment with curiosity, start asking better questions, and LISTEN.

Tan and teal background illustrating how nurses can improve pain management by advising "Instead of rating their pain on a 1-10 pain scale, ask pain patients..." with 6 graphics and questions around each one and janetjay.com at the bottom — These questions are so much better than “describe your pain on a scale of one to ten.”

The Daily Grind of Pain

Dealing with uncontrolled pain is a constant drain and struggle on every part of you. It wears you down. And it is truly hard to communicate the depths of that exhaustion. (Especially when you’re, yknow, exhausted and worn down.) Add in the amount of time and effort we expend on things like trying to get a pain clinic to call in a refill for a controlled med or an appointment with a specialist. All the time we spend middle-manning between specialists and insurance. Then there’s the fact that even a beloved doctor could retire tomorrow, or be targeted by the government. One hit of medical cannabis or a poppyseed muffin and you might be kicked from pain management, lucky to get a taper.

By the time you are seeking help you are already pretty desperate. Realise that someone professional likely told them that “it’s all in your mind” or that “you are likely just dehydrated” at some point recently. Mental health is a major major factor by the time they get to a pain specialist. Most of us will have contemplated ending our lives due to the pain.

“Deaths of despair” like these from alcohol-related liver diseases, overdoses and suicide have risen sharply in recent years, especially for certain types of patients (middle-aged, Black, Indiginous, LGBTQ+).⁴ Even excluding overdose deaths, the combined mortality rate from suicides and alcohol-related deaths is higher than at any point in more than 100 years. Suicides have not been so common since 1938, and one has to go back to the 1910s to find mortality from alcohol-related deaths as high as today’s.⁵ Add in Trump’s new policies… We are seeing and will see more of so much needless pain, suffering, and death among people with chronic pain and other disabilities. These laws are not written or intended to help anyone. The cruelty is the point.

“Not a single person has shown the briefest of concern over my son’s quality of life. It’s just ‘opioids always bad, you’re too young, let’s try another useless procedure that never helped.’ It’s really sad that you have to wonder how long you’ll want to exist because no matter what you do, you’re in moderate/severe pain. It’s awful to witness.“

Quote about invisible illness on a background of blurred flowers reading "courage doesn't always roar, sometimes courage is the quitet voice at the end of the day saying 'i will try again tomorrow'" — For more inspirational quotes about chronic pain and joy, click here!

Playing the Perfect Patient

I’ve spent the majority of my life, ever since my sophomore year of high school, learning how to toe the line trying to be “the perfect patient.” (And even then, it’s sometimes not enough.) I’m not alone; most pain patients have to learn to do this sad dance in order to obtain adequate treatment.

It’s a hell of a lot of work to be in pain! But it’s even more to be the kind of patient that the American medical system demands we be. If we break down, we’re being hysterical… but if we stay composed, we must not really be hurting. For doctors, it’s crucial to know what patients have been through before they walk in the door. Try to understand what we deal with day in and day out.

Over clipart of a woman standing next to a clipboard an d bottles of pills throwing up horns, text reads "eExactly what to say to your doctor to get an urgent refill on the meds you need, free download to customize, janetjay.com" — *It’s gotten so absurd that I’ve had to write actual scripts for my friends to read in certain situations, like asking for a refill of a controlled medication*

“We live in fear. If we say or do the wrong thing, we are dismissed and what little help we might be getting is taken away. We want to be heard and believed, not dismissed or put in a category of drug seeker. Most, if not all, pain patients would love more than anything for their pain to be resolved without taking any type of medication. However, even with the advancements of modern medicine that still hasn’t happened. We want to be treated like humans that matter.“

“Opiates aren’t the villain, they’re a tool.”

That’s what one commenter said, and it’s true. We literally just want to live a life that isn’t filled with outright misery from the moment we wake up to the moment we struggle to sleep.

“I don’t want a high. I want to be able to do the dishes. Walk my dog. Go to work.”

There’s an old maxim in the justice system termed Blackstone’s Ratio: “It is better that ten guilty persons escape than that one innocent suffer.” The same logic should apply to pain meds– a perspective that the med student said they particularly appreciated.

“It is better to enable someone in an addiction than it is to deny treatment to someone experiencing great pain. People just looking to get a fix will find one no matter what but people who are in severe pain are likely to take their lives or simply suffer unrelentingly if treated like they are ‘faking’ or ‘drug seeking.‘”

As the med student said: “I think this experience has opened me up to wanting to listen more to my patients with curiosity, without dismissiveness.”

The Provider’s Side of the Equation

We may have a lot to say, but it only matters if someone is listening– so I contacted the OP to hear what their takeaways were. The student said that they were now more interested in the “meaningful work” of pain management, but acknowledged that they see, on their side, its potential to cause provider burnout. They mentioned being surprised to hear that we may not visibly show pain, even if we’re experiencing it severely, and noted that they were hearing about some things for the first time, like fascia’s role in many chronic pain conditions. They hoped that this experience would help them “avoid the pitfalls of dismissing patients’ pain.”

It’s a hell of a lot of work to be in pain! But it’s even more work to be the kind of patient that the American medical system demands we be. If we break down, we’re being hysterical… but if we stay composed, we must not really be hurting.

An infographic titled "how to incorporate patient insights into chronic pain care" with 5 different bullet points and clipart for each — Here‘s more of what I told AAPMN’s pain medicine nurses about chronic illness!

What else did the med student learn about chronic pain care?

Chronic pain management is a “nuanced field, requiring careful attention to the different needs and problems of patients, requiring empathy, curiosity, dedication and long term planning skills”
The experience reinforced the importance of “listening more to patients with curiosity, without dismissiveness”
Pain management can be “quite frustrating on the patient’s end” and building a therapeutic alliance can take time and trust
As a provider, chronic pain management can be “emotionally exhausting” as clinicians must balance pain relief with potential serious side effects, particularly in certain populations, like older patients
Overall, Reddit’s discussion about chronic pain helped them learn how “diverse” the field can be, with “many undiscovered potential solutions,” but also made them more aware of the emotional toll on BOTH sides of the doctor/patient equation in chronic pain care.

Changing the System, One Conversation at a Time

This thread proved what can happen when patients are given space to speak and future doctors are willing to listen. As one comment said, “I think if you look at your patient as a person and see how much they are truly struggling with their chronic pain you will turn out to be an amazing doctor. Just coming to this forum and asking is a huge step above some of the other physicians out there.” It’s not just about treating pain. It’s about building–and rebuilding– trust.