Thread by @purplemamabear

#PainKills
I am angry tweeting and usually that is never good but I am angry. My heart is breaking for another mother who lost their child to pain. She had her entire life in front of her. Her entire life! For many years she struggled with #pancreatitis. She was 1/

not in an area where there were many #physicians aware of #pancreatitis. I provided the mother names of experts in the field but sadly they never followed up or called. I have often seen this. As a parent I would carry around my husband & kids genetic 🧬 results 2/

in order to ensue that physicians would listen to me. I’d provide them with the names or our specialists. A few times physicians listened many times they did not. So often my husband was questioned about his alcohol use relentlessly EVEN with the test results. It was a 3/

struggle often to get #physicians to believe. It got worse after their #pancreases did not show amalyse and lipase increases. If you progress in your disease these often don’t rise. Even though this girl had a diagnosis she was dismissed. Her mom was single and 4/

struggling a beside herself as to what to do. Early on she was like me - the doctors told her to ignore her daughters pain. I was told this also. They said her daughter was getting secondary gain out of being sick. This made things worse and caused issues between mom & 5/

daughter. Of course when mom put a stop to it doctors blamed her. Never once did they take into account what their behaviors were doing to this family. The girl had #pancreatitis. I have watched my husband and kids deal with #pancreatitis #pain & it’s devastating 6/

you literally are lost at how to help. My kids would get into ‘positions’ and tell me not to touch them 💔💜. As this girl got older she struggled and I want to scream ‘no shit’ of course she did. Instead of addressing pain got freaking diagnoses of borderline 7/

personality disorder. I think I will lose it if I ever see a physician talking about people w #chronicpain having #BPS - maybe trauma from being dismissed? With that dx #physicians truly did not look at #pancreatitis. I repeatedly gave mom numbers to specialist 8/

yet when she provided to doctors they ignored her. I saw this unraveling the last several years and my heart hurt. I’ve feared the same thing would happen to my kids. They both have experienced comments such as ‘pain won’t kill you’, or ‘you are doing this for secondary gain’ 9/

I’ve seen my kids dismissed and abandoned. I get it, not all #physicians are bad but right now I am angry at the medical world. I am angry at #CDC #DEA #PROP & all those moralistic individuals who are trying to ‘save’ #chronicpain #patients from #opioids. We are 10/

seeing deaths! AND while I do believe in an interdisciplinary approach inclusive of, if beneficial, psychological strategies most of the times imho these are implemented wrongly & and a very shamed based way. ALSO when you have some one in 24/7 #chronicpain you 11/

are not just going being able to use mindfulness. You just are not. I am angry. Right now I am angry at doctors ignorance and quick judgements of those in #chronicpain. I am angry at the #biases that exist. I am angry at these kids being given damn psychiatric 12/

diagnoses and their pain not addressed bc by giving a psychiatric dx they are ‘addressing’ it (ignoring). She is was 18 years old. Pain care needs to be better today. I am tired of doctors that read one or two things about pain and then make dx and judgements 13/

pain care in the US is abysmal in most places. It’s seems as if you have #chronicpain #physicians want nothing to do with you. I do want to apologize to the physicians I follow/follow me. I know there are so many good physicians & that you are working in a very 14/

difficult situation (COVID & crappy system) but this has devastated me for so many reasons. I started becoming involved bc I saw all the harm my kids went through and I wanted it to be better for kids with #pancreatitis but the system/care when working with kids 15/

with #chronicpain NEEDS to be better now and physicians need to be aware that they can cause trauma and that dammit #paincankill. 18, whole life ahead of her 16/