#PathologizingPain
#ChronicPain is the most prevalent health issue for Americans, yet, there is a lack of acknowledgment of the impact of pain on individuals QoL as well as access to quality options available. The last several years we have seen a proliferation of 1/
psychological strategies be touted as solutions for both #chronicpain & #acutepain. This has been fostered by the #CDC guidelines as well as various independent groups. As an individual who works in the area of mental health I am alarmed at the amount of #gaslighting that 2/
to those with #chronicpain & the belief by many physicians & professionals that psychological strategies will alleviate #chronicpain as a stand-alone strategy. I DO believe that psychological strategies CAN be of benefit addressing pain, but, how #pain is being #pathologized 3/
by certain groups will and has most definitely deterred those who experience #chronicpain to shun these strategies. It’s absolutely understandable. I believe that each patient must have individualized care for their #chronicpain, however what is being seen is the one size fits 4/
all. It doesn’t. We are also seeing pain physicians move totally away from #opioid #pain #medicine & house psychologist in their office as part of team. AGAIN I do believe that psychological strategies can be of benefit to some. I also believe #opioids can. Unless #pain 5/
psychologists step up & voice their concern of the pathologizing of #pain, patients will be unwilling (and rightfully so) to access this as part of the toolbox 🧰. This is so critical! I have tweeted about my own children’s experience at a #pain clinic. It was one size fits 6/
all. It was very shaming. I was told, my children were told not to talk about pain or other health issues. Everyone that came in was titrated from #pain medications. There was some excellent classes and strategies presented but due to their approach, their unwillingness to 7/
tailor care it was unsuccessful & harmful. I wrongly assumed I had failed. I didn’t, neither did my kids. This program failed. The one size fits all failed, the pathologizing of #pain failed. When you have ANY #chronicIllness there will be a psychological component AND 8/
that is #Normal. What is harming is the all encompassing belief, and this is so prevalent, that #pain originated out of some unresolved trauma. My kids had a genetic disease, we trusted doctors, doctors are not always right, they are humans. The #trauma they experience is DUE 9/
their medical journeys. This is a call to all #painpsychologists all those that work in area of #chronicpain, stand up to those attempting to pathologize #pain, work with patients, work with families in order to improve care, don’t ‘do unto’ do ‘with’. 10/
The lack of trust by #patients & by #caregivers is justifiable. There is so much more we need to learn about #pain but it must be done together 11/ #CPP #NEISvoid #AtTheTable

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More from @purplemamabear

17 Jul
I am perplexed how #RogerChou can not only sit on the #CDCOWG but is a lead author. He recused himself at the #CDC meeting due to #COIs bc of his work as ‘expert witness’ in Purdue litigation but is lead author 🤷🏻‍♀️ @CDCDirector @CDCInjury could you explain how this is ethical? 1/
Listening to the #CDCOWG from perspective of #caregiver & advocate was disheartening. For me @CDCDirector assurances that #patients voices were heard was meaningless. She may say that we’ve been heard but then how are so many feeling as we haven’t been? Why are the #legislation 2
of these guidelines continuing? Why are those who have benefitted from #opioid #pain medications being removed, shamed & stigmatized? Why is care not individualized? It’s very clear our #voices have not been heard. There is nothing that was said that eased my concern for 3/
Read 19 tweets
16 Jul
I want to again express my concern to my senators @SenJohnHoeven and @kevincramer about the lack of transparency by the @CDCDirector @CDCInjury in the revising of the #OpioidGuidelines. Great harm has been done to those w #chronicpain in our state. @SanfordHealth 1/
cut all #patients off of #opioids at once due to what administration stated was because of ‘national standard’ (#CDC Guidelines). So many harmed. How are actions like this ok? Three weeks prior to my son being removed from #opioid #pain medications we had met with his 2/
#pain physician & had a long talk about #opioid #pain #medications being best option for him. Removing individuals w #chronicpain from #opioid pain medication was not a decision based on individual care of #patients BUT @SanfordHealth taking care of own needs. Multiple 3/
Read 12 tweets
13 Jul
Thread: Thoughts on #valuebased & #patientcenteredcare

Within #healthcare & #advocacy there seems to be a great deal of discussion on both #valuebased care & #PCC. #Healthcare costs have skyrocketed’ & thus a need to #reduce. I am not an #economist but as a #caregiver I 1/
definitely have seen ‘waste’. From my POV costs will continue to skyrocket even if #valuebased care is implemented. One reason (again not an economist) is the vulture ‘istic’ aspect of industries profiting from our system. The other reason is that our system is not centered 2/
around the #patient or patients needs. Thus, if the value based metric is reduced hospital admissions, this, on the face seems straight forth, however if the patients needs are not taken into account but only focused on established metric, costs could (& I will argue often r) 3/
Read 14 tweets
11 Jul
I can’t remember who said this, so I apologize, but the app -lication of #healthcare is not the answer to magically transforming the system. So many applications, portals, surveys…. They can assist but first a true cultural shift must be made in #healthcare. For this to be 1/
those working in system need to be supported. Currently our #healthcare system lays the burdens of the broken system at feet of #patients, #caregivers & healthcare professionals. So much must change. It must not be a system based on vulturism (I know not a word) of entities 2/
focused on making millions of dollars of the backs of those who are vulnerable. We have allowed this, we must change this. One persons voice I appreciate is @RepKatiePorter but others must understand the harm occurring. Our system is not functional. For some reason those 3/
Read 4 tweets
8 Jul
I posted this yesterday with parents permission. I wanted to expand on this video a bit.

1st, a big part of me feels very uncomfortable with posting. Just like a big part of me felt uncomfortable about posting about my kids experience (w permission). It feels exploitive. 1/
Yet, when I share experiences of #caregivers & or #patients (who had given me permission to share) those experiences were/are often questioned or I’ve been excused of exaggerating. Or like many others called a #shill for #Pharmaceutical companies. I am a mother, who 2/
witnessed first hand the harms of pain ignored, not treated, under treated or labeled as #psychosomatic. I remember very vividly how my kids would arch their backs in pain & scream. How helpless I felt. I have seen the repercussions of this #harm & am absolutely obsessed 3/
Read 15 tweets
7 Jul
I wanted to share some comments by #parents whose children have #pancreatitis. As I have shared before, the #pain care for these kids is NOT adequate. Their #pain is often not being addressed. I have asked parents to start writing up their stories to share. When #pain is not 1/
addressed it causes trauma, not only for the child/youth but parents. We know unaddressed #pain can lead to #chronicpain. I absolutely believe in #biopyschosocial approach but what we are seeing is a #psychosocial approach being utilized and #bio aspect missing. This leaves 2/
#parents and #patients feeling angry & abandoned. One of the reasons I started getting involved in #advocacy is that my kids #pain was dismissed, they were labeled. This leads to #trauma, #chronicpain & distrust of #physician. What HCP need to understand is that when this is 3/
Read 7 tweets

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