The dark side of Explaining Pain? Gaslighting pain patients with PNE

It’s time for another regular reminder that this “pain science” stuff on my website is not — NOT NOT NOT — equivalent to “pain neuroscience education” (PNE) or Explain Pain (EP). Not!

Pain neuroscience education & Explain Pain: an approach to treating pain by educating patients about how it works. (PNE is the generic term, EP is the “brand,” in a way: actually the title of the famous book that explains Explain Pain, but it has become almost synonymous with PNE.)

Pain science: the scientific study of pain, which is a much bigger topic than PNE alone. And the science of pain definitely does not lead inevitably to PNE/EP.

But people sure do talk like pain science is PNE/EP, like they are exactly the same thing. I see it almost every day on social media. People often even capitalize “Pain Science” like it’s a brand. It’s not my brand or any brand. There is no Pain Science™! And it freaks me out a little every time I see it capitalized, because I do not want PainScience.com to be perceived as “that PNE/EP website” — no matter how I feel about PNE/EP.

And how do I feel about it?

My mood about PNE/EP lately: awkward

The point of Explaining Pain is to treat pain by teaching people about how pain works, giving patients rational confidence that the bark of pain is often worse than its bite. It rests on the hypothesis that the experience of pain can be significantly tuned by its context and significance, especially high-level threat assessment. The claim is simple: if we think that a sensation is dangerous to us, we will have a more intense pain experience; if we think it’s harmless, we will hurt less. (These ideas are explored in detail in Pain is Weird.)

When I first became aware of Explain Pain in the early 2010s, it seemed largely beyond reproach, and represented the bleeding edge of the science of pain. It seemed like the first serious challenger to the dominant and obnoxious paradigm of “structuralism,” the obsession with biomechanics and alignment in manual therapy, which I had been at war with for years. The creators and major proponents of EP seemed humble but expert, earnest, and very keen on the science. And so I did embrace it as a major example of modern pain science. I started systematically PNE-ifying my own content — a major initiative that went on for years.

But literally nothing in this field is uncontroversial, and so over the years I have become aware of a variety of substantive objections to PNE and Explain Pain, and not just from anyone — many of them come from people I respect. I have already been exploring these concerns obliquely in posts like these (off the top of my head), all chipping away at the (extremely tricky) question of whether the mind can actually create or modulate pain:

• Can the mind create pain? (Member Post)
• BPS-ing badly! How the biopsychosocial model fails pain patients (Member Post)
• How I got a study about pain and anxiety all wrong (and got set straight)
• The legend of Boot Nail Guy reconsidered
• The scary scrubber teaches me about the motivational power of pain (Member Post)

A patient speaks out about the gaslighting of patients with pain neuroscience education

Despite the long intro, this post is otherwise entirely devoted to a particularly noteworthy criticism of PNE/EP from a patient’s perspective, explaining the problem with pain-explaining as it can happen in the real world … and perhaps does all too often. I asked this question in a public forum:

What seems to be the problem with Explain Pain? I am aware that there have been complaints and concerns about Explain Pain and the work of NOI in general — as one would expect of any significant body of work in this field — but I draw a blank when I try to bring to mind anything specific/substantive.

I have no dog in the fight, and I am happy to look at any citation or recommended reading.

Kira Stoops replied, and it was gold. Kira is a friend and long-time reader and ally with serious chronic illness herself; she has struggled with major chronic pain, and is an articulate advocate for patients. I just want to share her superb answer. Take it away, Kira…

From my perspective as a patient (and owner of everything Butler and Moseley have published and a longtime follower who then spit out the Kool-Aid) is that the tenets are misused to gaslight chronic pain patients, sometimes into serious disability.

There is pain for which we can see an obvious cause. And there is pain for which we cannot. The lack of an obvious cause for pain does not mean there isn’t a cause. It does not mean the pain must be driven by fear or the amygdala.

Pain without obvious damage can cause harm. Repeating “motion is lotion” when the issue is in the tissues is how — in part — I went from an active chronic pain patient who could ski and hike to a woman catastrophically disabled in her thirties and wracked with pain 100× worse than I had before.

And the teachings of Explain Pain encourage us to muzzle our reality. If you cringed at the phrase “wracked with pain,” then you know what I mean — because gosh, that’s unpleasantly descriptive!

I do think Explain Pain has a place, in context with everything else, but it doesn’t replace everything else. I don’t know that David Butler and Lorimer Moseley meant it to, I hope they meant it to be incorporated … but the clinicians I worked with took it as a new gospel. There are upsides to the theory, and lots of interesting ideas! I think we need it, but it gets used like … oh, everything else: too simplistic, a faddish panacea. At one point the answer to everything is coconut oil. Or yoga. Or keto. Or Explain Pain.

My physical therapist was flabbergasted that I only got worse when imagining the movements then doing them while thinking my “safety in me” thoughts (and other EP fundamentals). He didn’t have the breadth to also say, hmm, maybe she has an underlying connective tissue disorder. Or hmm, maybe her gut has turned into an antigen generator and her tissues are getting inflammatorily bombarded. Or hmm, maybe her ATP production is totally whacked by ME/CFS and girl can not recover.

He didn’t know how to use EP in any way other than like a sledgehammer that obscured my reality, and left me worse off.

Calm rather than fear is probably a good thing, but many chronic pain patients aren’t acting out of what their clinicians label fear. They’re acting out of intelligence. For years I browbeat myself into calmly doing shit I really should not have been doing. My body was sending the right signal, not a false alarm. And then I felt like a failure when I still hurt anyway. But I was never “afraid” to do the thing in the first place. This is where intelligence gets in our way. A dog learns not to do things that repeatedly hurt. Explain Painlets like me “intelligently” talk ourselves out of heeding our own reality.

Sometimes we hurt because there's something really wrong, not just because we’re spooked. Maybe a lot of times.

The way that patients are infantilized in this framework is depressing too. We’re labeled fearful or catastrophizing and in need of encouragement and more SIMs. Sometimes, this is totally the case! Increasingly? It’s not. I wasn’t fearful, I wasn’t catastrophizing, and I didn’t need “encouragement” or “SIMs.” I needed diagnosis, understanding, and treatment that just isn’t even invented yet.

Here’s a real fear I do have: that clinicians will blame me when I fail to heal via Explain Painy type methods. And then it’s a personal failing, not a real disease that deserves research. Acceptance is only a great solution until we can find a better one. I firmly believe less pain should be the goal. This is not a popular take in the chronic pain treating world, and I find that … extremely cruel.

And to me, that is the biggest challenge facing the chronic pain world. We do not know enough, and Explain Pain doesn’t fill in enough gaps. It’s not entirely that PT’s fault that he doesn’t know, and it’s not my fault I’m not a “responder” to Explain Pain. I’m glad when it works for people! But that doesn’t mean it’s the end all be all for all patients.

In the absence of thorough understanding, a plausible mythology like Explain Pain is tempting.

We want it to be the answer, because we want an answer.

That doesn’t mean it is.

Kira is hardly alone. Seeing this reaction from patients is not quite a daily occurrence for me, but it’s close. Here’s a recent one, for example. Surprisingly, my impression is backed up by data as well: Weisman et al studied attitudes about PNE expressed on social media, and found that “people living with persistent pain are more likely to express negative attitudes to PNE statements on social media, unlike healthcare professionals who were less likely to express negativity.” The study has some real limitations, but it’s considerably more cromulent than my own “impression.”

This seems so common that you really have to wonder if there isn’t quite a serious, systematic problem with EP in practice — even if it’s nothing but goodness in theory.