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
