By Neen Monty
It seems like everyone these days has an unsolicited opinion about my pain management. Physical therapists, pharmacists, even my dentist has decided they need to weigh in on my opioid use.
Why do health care professionals who do not specialise in pain management feel entitled to comment on the way I manage my severe, long-standing pain? They clearly know nothing about opioids, have not read the studies, and are getting their knowledge from media headlines. If they actually read the studies, they wouldn’t be expressing these ignorant opinions.
But even so, it’s none of their business. If they are not treating my pain, why do they feel entitled to lecture me on a treatment plan that is well outside their expertise?
My rheumatologist doesn’t comment on my gastroenterologist’s treatment plan. My neurologist has zero interest in the way my immunologist is managing my symptoms. So why do health care professionals feel the need to comment on my use of opioids for pain relief?
For years, my pain was well controlled under the guidance of my GP — whom, I might add, is more than capable of managing pain. I never needed a pain specialist. I never needed to jump through ridiculous hoops or prove that my pain was “real enough” to deserve relief. And yet, thanks to the manufactured opioid crisis here in Australia, I was forced into a system that treats pain patients like criminals.
Let’s be clear: I am not an addict. I am a person with severe, incurable and excruciatingly painful diseases. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a progressive neurological disease that attacks my nerves. Refractory rheumatoid arthritis means my immune system is at war with my joints – all of them - and it’s winning.
These are not minor aches and pains. This is not pain that comes and goes. This is constant, severe pain. Pain when I’m at rest and even more pain when I move.
These are not conditions that can be fixed with a little physio, deep breathing, or positive thinking. They are devastating, life-altering diseases, and pain relief is essential to my ability to function.
And yet, here we are. Every healthcare professional I encounter suddenly thinks my pain medication is their business.
My dentist, who is supposed to focus on my teeth, thinks it’s appropriate to lecture me on opioids.
My physiotherapist, whose job is to help me maintain muscle strength and mass, feels the need to moralise about my use of opioids. He is an expert in physiology and movement science, but knows nothing about pharmacology. Yet he believes that he does. And he's happy to tell me so.
Pharmacists, who definitely should know better, jump on the bandwagon with their judgmental takes. Yes, I have a supply of naloxone, even though it’s the biggest waste of money the government has ever been conned into spending by addiction researchers. I am at zero risk of needing it.
And no, I do not want information about how to taper my pain medicine. I actually need my pain medicine. I take it because I live with neuropathic and nociceptive chronic pain. You should try it sometime. I don’t think you’d enjoy it, but you’d be a better clinician. And person.
All of this unsolicited advice amounts to little more than bullying. Just the mention of an opioid turns some health care professionals into the high school bully. Do you want my lunch money as well?
What is this obsession with controlling other people’s pain relief? Why do you even have an opinion, when it is far outside of your area of practice? How can you possibly think it’s appropriate for you to judge how I treat my disease or my pain, when you met me two minutes ago?
Most of all, where is your empathy? Your compassion? Your human decency?
Lecturing and hectoring me is not compassionate, person-centred care.
Do you have an opinion on whether I take methotrexate or baricitinib for my rheumatoid arthritis? Does it matter, to you, which cDMARD or bDMARD I am taking? You’ve never heard of them, have you? They rarely make media headlines. Yet they are both riskier medications than opioids, and are more likely to cause serious adverse events. Yet you don’t care about those at all.
Do you care about my IVIG infusions? It’s extremely expensive medication. Unlike opioids, which are very cheap.
What about my steroid dose? You should care about that. All health care professionals know that high dose steroids, taken long term, are very dangerous. They often end up killing people. But because ignorant medical practitioners have taken my opioids away, I have been forced to live on high dose steroids. And all the side effects they bring.
But that’s fine with you. You don’t care about my steroid use. Only my poor endocrinologist does. Lovely gentleman. I can tell he truly cares about me as a patient. It shows in the way he treats me. With calm, gentle respect. He also stays in his lane. The only comment he has made about my opioid use is something akin to “I’m sorry you’re in so much pain.”
That’s a good doctor. After my first appointment with him, I went to my car and cried for 15 minutes straight. I’m not used to receiving that kind of compassion and empathy.
I normally get lectures. Unsolicited advice. And scare tactics: “Those drugs will kill you, you know!”
Or disgusted disbelief: “The pain can’t be that bad!”
Or, very commonly, abandonment: “You’re just going to have to learn to live with it.”
But why should I learn to live with pain that is easily treatable? Because you refuse to read the science? Because you like to get your medical knowledge from politicians, corrupt psychiatrists on the take, and researchers who misreport their own data to keep the grant money flowing?
Yeah, I know. At first, I thought all that was a conspiracy theory – no one would be so evil as to harm people who live with horrifically painful diseases just to further their own career, right? Of course not. No one would do… oh wait. Yes, they would.
Opioids are not for everyone. And thankfully, most people will never experience the kind of pain that requires around-the-clock opioids.
But when opioids are the only thing that reduces pain enough so that a person can survive and have a life, then opioids should be given. And in doses that actually relieve the pain, not a dose that some regulator or politician decided would be enough for everyone. Severe pain is a medical emergency. It does not matter if that pain is acute or chronic.
But let’s go back a step. I am in constant, severe pain. My nerves are being destroyed by my immune system, as are my joints. This is a documented and very painful disease process. Yet there is not an ounce of empathy. Not anymore, anyway.
Back in 2011, I went to a GP in absolute distress. I could not cope with the pain anymore and was crawling along the floor to get to the bathroom. The GP was compassionate. He knew that severe RA is a horrifically painful disease. He prescribed oxycodone and I got my life back.
And now? Health care professionals only have one thing to say: “Stop taking those opioids!”
It’s clear that these clinicians do not believe my pain is severe. It’s clear they don’t believe anything warrants long term opioid use. It’s clear that some think I only want opioids to get high.
Most clear of all is that they feel an entitlement to lecture me about it. When they know nothing about my pain.
The stigma created by the manufactured opioid crisis has turned us into the type of patients no doctor wants to treat. We are seen as liabilities. Nuisances. Whiners. Complainers. Time wasters. We’re seen as problems to be managed, rather than human beings in desperate need of help.
“Heartsink patients.” Are you familiar with that term? Google it. Heartsink patients are said to “exasperate, defeat, and overwhelm their doctors.”
I don’t fit that profile. Not even close. Very few people do. The profile was created so that doctors can feel they have the right to save the patient from themselves. Every single healthcare professional seems to think they have the right to weigh in, to judge and to lecture pain patients.
Here’s a radical idea: Mind your own business. Even better, educate yourself.
Read some recent science. Some peer reviewed science. Even read the studies that are referenced in the opioid prescribing guidelines. I promise you, they don’t say what you think they say.
Unless you are my GP or the prescribing doctor actively involved in my pain management, my opioid pain medication is not your concern. Yes, I need to tell you about it, in case you want to prescribe something that interacts with opioids. But that does not give you the right to judge me.
Pain is not a moral failing.
Taking opioids to manage pain is not a character flaw.
And it is none of your business.
Neen Monty is a writer and patient advocate in Australia who is dedicated to challenging misinformation and promoting access to safe, effective pain relief. Drawing on lived experience and scientific research, Neen has created a website for Pain Patient Advocacy Australia that is full of evidence that opioids can be safe and effective, even when taken long term. You can also subscribe to her free newsletter on Substack, “Arthritic Chick on Chronic Pain.”
