Wow.

This dissertation mirrors so much of my thinking about pain and medication stigma.

Reveals flaws in the definition of "chronic non-cancer pain."

Also explains why "patients not addicts" framing is problematic.

[Thread]

https://etd.ohiolink.edu/!etd.send_file?accession=antioch1474030298586346&disposition=inline

Here's one of my oft-repeated points. There's an issue in calling "chronic non-cancer pain" a disease, when it's hundreds of them:

"[N]o one seems to have questioned the confounding effects of variance among the population of CNCP patients in empirical outcomes research."

"CNCP does not demarcate a population that can be studied as a whole because the people in this category have only one thing in common: Their pain complaints are not attributed to cancer."

THIS.

"combines every known cause of persistent and/or recurrent pain... congenital disorders, physical malformations, auto-immune disorders, herniated discs, cartilage loss, repetitive motion injuries, conditions affecting the central or peripheral nervous system, and somatization..."

"The literature reviewed herein did not define the objective, material basis of a categorical distinction between cancer pain and CNCP—they accepted it as foundational."

On the hypothesis that a neural feedback loop is common to all chronic pain, a hypothesis I would challenge:

"The neural change hypothesis of chronic pain is generated from interpretations of neuroimaging studies. Are these conclusions equating correlation and causation? Do they
successfully address confounding variables within the study populations?"

Quite possibly, and not really.

"...it is the conflation of numerous pain conditions into a single disease entity that poses the largest threat to patient care. Why? Because attitudes, behaviors, and treatment decisions...will be informed by a conceptualization that renders individual differences irrelevant..."

"The common thread amongst all is the tendency to perpetuate the trend of collapsing CPCs into a single
category...."

"The question unasked is whether or how treatment decisions are compromised through ignoring the existence of etiological, mechanistic, or other distinctions."

"not only does categorical collapse narrow the treatment options that will make sense to providers, it also creates an oversimplified category of easily stereotyped and dismissed people."

THIS IS WHAT I AM ALWAYS TRYING TO SAY

But few in the health care field will vouch for my credibility on this, because:

"[s]omeone speaking on behalf of a discredited subject, from the position of a devalued identity, has limited means by which to influence their reception or the behavior of their interlocutor."

"Dysfunctional brain chemistry, whether it is identified with pain, addiction, mental illness, or acute drug effects is invoked to undermine a subject’s believability and generally devalues their position in the discourse."

Whether or not brain chemistry is relevant in context.

"Ergo, anyone advocating continued use of opioids is automatically suspect. There is no logical ground upon which opioid users can claim benefit... if opioid-induced impairments inevitable. Or if opioids are ineffective
for the task at hand — mitigating pain of a chronic nature."

The Catch-22 of pain advocacy.

By advocating for medication access, while also being medication users, we have already discredited ourselves in some circles.

Stigmatizing addiction even more doesn't give us back the benefit of the doubt.

What does? Still figuring that out.

As Nickerson points out:

"If the subject of opioid use is generally associated with an absence of productivity, or rationality, then it is the individual opioid user who must show themselves an exception to the rule..."

"But how is this to be accomplished if expression of need or desire for opioids is perceived indicative of illegitimacy by gatekeepers and policy makers?"

Whether we are "pain patients" or "addicts," our credibility is confiscated and re-assigned back to us by others.

In internet forums, Nickerson finds patients using "detailed anecdotal narratives to establish their authority and demonstrate the legitimacy of their claims.... a sociolinguistic register that may not be well heeded by those steeped in the succinct precision of academic jargon."

I'm a pain patient and (while "succinct" is not my strength) I'm fluent in academic jargon.

Still not very well heeded, here on the internet.

"People who dismissed opioid efficacy also dismissed patients claiming benefit."

We are right here. We are asking not to be dismissed.

Nickerson's suggestion:

"Opioid using pain patients should receive greater attention in the pain care literature. Their claims of safe and efficacious use of opioids with and without dosage escalation should be taken seriously by medical researchers and practitioners."

"There may yet be sound reasons that some patients have claimed COT facilitates continued productivity or improved quality of life through mitigation of pain related suffering. Understanding what these reasons might be can inform decisions..."

Hi, doctors? We know the reasons.

"Is it possible that some chronic pain is the result of on-going, or recurrent nociceptive input which ought to be addressed or at least acknowledged?"

Why yes, it is possible! Ask me how!

"[W]hat of the opioid using patients with neuropathic and/or myelopathic conditions that assert positive response to COT? Are these complainants to be discredited at the fore, and if so on what grounds?"

Aren't scientists supposed to learn from the subjects they study?

So often, humans view other humans through overlaid assumptions of what "that sort of person" might say, not what those other humans are actually saying.

That's not a very good way to learn anything.

Conversation at my house just now:

Me: Wow, I just found a dissertation that says exactly what I keep trying to say on Twitter! About how pain patients are labeled with "brain dysfunction" and discredited!

Husband: No they're not.

(Equals in snark, partners in life. )

So is this dissertation well-known?
@StefanKertesz @headdock @speakingabtpain @tal7291 @LeoBeletsky @VanilaSingh @aander1987 @CarlynZwaren @prof_goldberg @BethDarnall @PainPtFightBack @ZackBergerMDPhD @keithbrownph @AjayManhapra @BobTwillman @DanLairdMD @ChadDKollas @DrSeanMackey

Certain others, to whom I wish I could pose the same question, have long since blocked a random stick figure claiming to be a pain patient while indulging in (admittedly excessive) sarcasm.

Which is, of course, exactly the point.

Whoops, just realized I accidentally mis-typed @keithbrownmph in my list of experts on this thread here... thanks to @keithbrownmph for signal-boosting chronic pain and disability rights!