1/ A #caregivers perspective on chronic pain: over the last 20 years I have watched my husband and 2 kids struggle w acute and chronic pain. It has been devastating to watch, I can’t imagine living thru it. I am not just angry at @CDC, @supportprop as well as a host of other
2/ for the lack of access to pain meds. For me personally, even before @supportprop and @CDCgov we had issues in 🇺🇸 w quality and access to effective care for pain. I believe that there are various types of pain and various severities of pain. For example I have a friend who has
3/ pain daily but due to some different modalities it’s been controlled wo pain meds. Again people have diff levels of pain she will say it hurts and constant but at this time what she is doing is effective. She does worry if it worsens what life will be like. My point is I
4/ think the actions of @supportprop, @CDCgov has impacted the care in so many more ways than denied access to pain meds. I do think this is an issue but I also think there are many other issues. Good comprehensive care for pain really has been non existent except in 🇺🇸
5/ in a few areas. Insurances do not pay for various modalities of pain. My son did amazing w biofeedback. We could not access wo going out of state so it was not accessible. I am not saying my son would be off pain meds if had access but I do believe that he may have needed
6/ less and to me that would be a ‘win’. My kids are on tons of diff meds and the less meds on the better in my opinion. For many they cannot access other options. The options are shots or meds. There has always been imho a shortage of good physicians that understood pain
7/ now due to climate there is another issue layered on, trust, which is huge. No matter a persons health issue trust is paramount. The climate has influenced entities so many patients feel that they cannot trust their doctor. This is devastating. You need a patient to be
8/ honest but this has been shut down. Why would a patient w chronic pain be honest? They have very often experienced being labeled or dismissed. I don’t understand how physicians do not see this as dangerous. The attitudes that permeates healthcare right now re those w pain
9/ are as dangerous and harmful as denying pain meds. It is resulting imho in implicit bias as well as outright discriminatory practices. The lack of access to multiple modalities, the lack of access to really good physician that know pain, the denial of pain meds when
10/ they have provided ind QoL, the implicit bias, the stigma, the erosion of patient/physician trust has led to a very dangerous period for this w rare diseases and chronic pain. The actions of @cdc @supportprop and others imho have negatively impacted the tx of those who have
11/ #chronicpain in so many ways. I am one who is interested in multiple modalities that can assist w pain even those psychologists ones that some have issues w BUT I think there is wariness and outright distrust bc of actions and statements by many in HCP. Why should we trust?
12/ so in closing I am angry at the multiple ways the care of those has been impacted due to certain actors. It’s more than the denial of pain meds. I am fearful for my kids and their future. How can things get back on track. And finally I do want access to multiple
13/ modalities of care. I want them ALL on the table individualized to my kids. That includes pain meds. It’s not just denial of pain meds it’s so many other things that these groups have done to set pain care back. Just my thoughts
