Thread by @purplemamabear

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/