Beth Steckler (she/her) Profile picture
Apr 25, 2021 15 tweets 8 min read Read on X
I’ve continued to see a divide in #pain community, a lack of support as well as pretty blatant attacks. My position: none of us speak for the entire community. We all have are personal stories. Each is unique and sacred. Pain occurs on a continuum and there are 1/
a variety of variables involved. As a parent what I want is a wider variety of options that is paid by insurance, I want voices to be heard, I want individual care, transparency and partnership with physicians & HCP. I want accessibility in the community I live 2/
I want a coordinated approach that is patient and family centric that takes into account barriers of treatments. When I say I want a variety of strategies & treatments I absolutely mean it. My kids have utilized ACT and CBT in a variety of settings. Sadly in only 3/
one setting was it not used in a way that was shameful, and blaming and done with necessary medications. I strongly believe IF my kids voices would have been acknowledging as well as mine, if a variety of strategies inclusive of opioids could have been used my kids 4/
could be on lower meds or only occasional. I truly believe that. Instead they have chronic pain, they have struggled with PTSD. I don’t have issue with psychological support. I believe it can be helpful. What I believe is that it can also be used to #gaslight & that causes 5/
immense harm. The way patients with #pain are currently being treated is similar to other #marginalized populations. Voices dismissed, seen as having no value or seen as perpetuating our illness. That is devastating. This is made worse by the present state of 6/
conveyor belt medicine & fear of opioids. For me, I don’t want to expose my kids to medications if another option is available - any medication. However, the current demonization of these meds are hurting people significantly. I truly believe for things to change 7/
practices need to be truly #patientcentric and family centric. We need to be at the table at ALL levels partnering not mere tokens. Various voices need need to be represented as we all have journeyed similar but different paths. To see members in this community 8/
dismissing others work, to see HCP that are in this field being attack and threatened is for me NOT acceptable. I truly believe that by dialogue we grow stronger. I do take issue with those in the profession that have actively attempted to dismiss voices but 9/
I still strongly feel that we need to use voices constructively. I do believe a few inds and organizations are extremely dismissive to including #patients voices and do use tools to encourage others to also exclude our voices. When we implode on each other, that benefits them 10
I have learned so much from so many here on twitter. My desire is to support family and children so that they feel they are partners & are able to access individual quality care. It’s apparent that what works for one doesn’t necessarily work for another. We need all the 11
research possible - we also need to have stakeholders, particularly #patients involved in that research. I believe that physicians and those in #pain field need to hear our voices but we as #caregivers and #patients need to be opened to those in field. That does not mean to 12/
necessarily agree but to have an open and non attacking discussion. I’ve worked for the government. I know that there are very good intentioned people in government but it’s (imho) a messed up system that doesn’t communicate well. I also do believe that there are 13/
individuals that are not necessarily focused on pure motives. To summarize I am thankful to all advocates willing to share their stories. They matter. I am thankful to those in the field doing research. I will however push for inclusion of various inds with #livedexperience. 14
I will push for voice in care, for care to be individualized and not patriarchal. @LelenaPeacock @JSG_54 @Chronic_FLKeys @life_is_art @StaceyF62 @CDCDirector @NIHPainResearch 15/

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More from @purplemamabear

Nov 1, 2023
I just want to let out my frustrations w the #healthcare system & how assembly healthcare does NOT work. I think back about programs my kids went to. One being a renowned #painprogram. My focus was to assist in developing tools they could utilize in life to deal w #chronicpain 1
& their #illnesses. I wanted a #balance, I wanted a plan that was based on their individual needs. Their #pediatrician at 1st stated she had concerns w #program & not an #option for them. The #clinic called #pediatrician back saying they’d modify it for my kids. There really 2
were not a lot of options. The program promised individual care so off we went.
Nope started #titrating all #painmeds to align w time of #program vs Ind need. Then denied my daughter right to go to walk in #clinic when she was having issues saying this is what youth did 3
Read 10 tweets
May 24, 2023
Just doing some digging. #Pain is extremely nuanced. And the approach should also. W my kids #health & #pain there has been continued lack of knowledge, assumptions, & unwillingness to understand.
➡️#Anatomy of those that had #TPAIT & lack of understanding
by many docs 1
how this can impact #pain
➡️ Not identify or understanding impact of #MalabsorptionSyndrome
➡️Assumption that removal of #pancreas should immediately ‘solve’ issue of #ChronicPain
➡️ #GastricEmptying issues
➡️ Age of my kids (too young to have #pain)
➡️ Lack of 2
understanding & identification of #MedicalTrauma
➡️T3c #Diabetes
➡️ Impact of #NASH on #pain & options for #care

There are numerous factors that are critical in #Treating an #ChronicPain in #Individuals. They list of few listed above that are factors w my kids, have often 3
Read 8 tweets
May 24, 2023
Reviewing some #NorthDakota information surrounding #prescribed #opioids.
#OpioidPrescriptions #declined 34% from 2006 to 2020

Statement in poster ➡️ ‘Since 2007 every state has been working to address the #opioid epidemic & best practices are now understood’

Are they? 1
In the #Conclusion
➡️ nothing that addresses the #harm of #patients that struggled with #chronicpain. #Nothing re #outcomes of those #abandoned by #physicians & removed from #prescribed #opioids. Nothing about the looming disaster of last #physicians that #prescribe in 2 Image
#NorthDakota leaving. #Patients having no recourse. #NorthDakota absolutely has growth in area of serving those w #SUD yet in their pursuit to do this, they have #harmed those w #chronicpain & continue to exclude them in discussions or acknowledge these #harms. @hhsndgov 3
Read 5 tweets
May 24, 2023
#Apologies can be steps towards assisting in #healing #medical #trauma. When my daughter was in @SanfordHealth for 2 months, virtually #secluded bc of accusations by #hospital administration that she causes her diabetic crisis a #hospitalist & #diabetic counselor accused 1
her of ‘stashing’ #Insulin in room. All visitors searched. No items in room unless searched - camera in room 24/7 YET she is accused of injecting #Insulin. My daughter again attempted to educate on post #TPAIT. After additional days, the #Diabetic #Counselor came back & 2
#apologized acknowledging how hard it was to control her #diabetes. It’s hard control when she is at #Baseline but if she is sick nightmare. That #apology meant the world 🌎 to my daughter. She continued to work w this #counselor throughout stay & after. YET #PatientRelations 3 Image
Read 4 tweets
May 24, 2023
#Pain is nuanced
The difficulty with articles such as below example, is nuances not recognized.
For example, I could identify as someone with #chronicPain I have a few conditions that are accompanied by #pain.
My #pain is NOT unrelenting, it’s there ‘hovering’ in the 1 Image
background. I do #yoga 🧘‍♂️ & #meditation & for ME, for the #pain I experience, it provides benefit.
However, take my kids; NASH, kidney disease, gastroperisis, T3, scar tissue neuropathy etc. #mindfullness #meditation is not going even touch it. Not in anyway
2 example of 2
#pain experiences.
It’s understandable that many in nation that are not in #medical profession struggle w the #nuances
What I struggle w & what I believe #harms those w #ChronicPain is the generalization of #pain by #medicalprofessionals & lack of individualizing care based 3
Read 4 tweets
May 24, 2023
#BuzzWords in #Healthcare that often mean nothing: #PatientEngagement, #PatientCenteredCare #SharedDecisionMaking
Studies have demonstrated for years that IF #patients are #authentically involved in #care outcomes are better, yet, too often the above words thrown out to 1
attract, yet no actions follow.
How often have you been asked your desired outcome of #Healthcare?
How often are you asked about barriers to healthcare or recommendations?
How often are plans focused only on med issue?
How often do you feel your #voice is truly #valued in 2
your own #careplanning?
How often do you feel there is collaboration between all doctors OR do you feel at times doc have competing or conflicting recommendations?

#Patients voice should be central. #LetMeHearYourVoice 3
Read 4 tweets

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