Rest of thread:
That can leave those suffering & grieving without the answers they desperately need.
As a person in the chronic pain community, I have watched that lead to immense suffering, unending grief and so much loss…and as a result increased self medicating, recklessness, suicides, requests for MAiD.
I understand how it gets there, because I live with #ChronicPain too. (Several types.)
And I struggle to hang on most days.
Especially in the face of the additional minimization/gaslighting we face in healthcare/society due to poor quality research and a serious lack of understanding of CP.
So what do we do about it?
First, HOW we talk about these issues matter.
We need to stop referring to “lifestyle choices” (places fault with patient) and start recognizing and addressing the real systemic barriers to healthy living that exist (where the faults actually are).
Misogyny, ableism, racism, financial insecurity, food insecurity, housing insecurity, lack of disability supports, and more are very prevalent barriers to healthy living.
The people creating this language in healthcare and research are some of the MOST privileged among us.
#Inclusion of our patient community means choosing a variety of backgrounds and experiences, and creating safer spaces for real discussions to happen about the realities and needs of those living with #ChronicPain.
But also the opportunities. And there are so many.
We could start respectfully tracking #ChronicPain in healthcare.
Acknowledging and believing it, counting it correctly, creating new tools to measure it…all respectful, inclusive and co-designed with patients.
No more shame, blame, neglect. Compassion and respect.
#Doctors could display #humility and #curiosity when they don’t understand the chronic illness-fuelled chronic pain they see.
They could read up on things like #hypermobility, #mastcells, #glial cells, neuro #inflammation research, etc.
They could believe us when we say it’s a 9-10 today.
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https://bsky.app/profile/sabrinapoirier.bsky.social/post/3lcxcph4iec2l
The scientific community strictly adheres to the defined parameters of evidence. Normally, anecdote is excluded from qualifying as evidence and normally - meaning usually, that’s good. But when anecdote is the only evidence you can acquire, then it becomes necessary to make the subject an exception to the rule; to even make a distinct rule for this subject that stipulates anecdote is THE evidence for chronic pain.
They get stuck in a closed box of we don’t have objective evidence therefore it doesn’t exist. Its foolish and useless and serves only to create a slew of offenses toward the sufferers of chronic pain: blaming, gaslighting, shaming, accusations of drug-seeking, and criminalizing. Its despicable and they know it, but they just can’t sit with the notion of trusting the patient’s word as the sole form of evidence. So they rigidly and stubbornly stick to their guns. And we suffer as a result.
There needs to be a voice of doctors and researchers who formerly held this position, but now suffer from chronic pain, and now finally understand. If they speak up in a unified group, maybe the scientific community would adopt an exclusive rule to this phenomenon. Maybe.
And I know that they’re not all like this. Many are opposed to this position. But I think the ones that speak to policymakers keep this position as it favors their careers by making those politicians happy that they can avoid any change.
Maybe I’m completely wrong, but this is the impression I’ve gotten.