Thread by @purplemamabear

Just listened to this podcast & it moved me to tears. I recommend #zebras, those with #complexconditions as well as those w #pain listen. My daughter has been deemed a ‘difficult’ #patient a #noncompliant #patient. Her chart is filled w truly notes that leave #physicians & 1/

https://twitter.com/StefanKertesz/status/1305666750432907265

other medical professionals biased. In a sense she was ‘difficult’ but 4 good reason. She had been dx at age 1 & had so many failed treatments & procedures. Her #voice often was dismissed bc she was young. As parents our voices were dismissed bc we were parents. 2/

With each failed procedure, with each dismissive action by #physicians she bc more difficult. Add in that she also had pain w her condition. And she knew what worked & this seen as ‘seeking drugs’. She also had a few irregular drug tests - which caused pain meds 3/

to be yanked as this was a sure sign of her ‘addiction’. After additional tests what it was, was malabsorption which is indicated throughout her chart but the biases of the #physicians & her growing anger established an adversarial cycle that seemed 2 go on & on 4/

As a parent I tried to intervene, to speak with both her & #physicians but most had already made up their mind......until Dr F. Just like Dr Weiner with his #patient he invested in her. He established a relationship. Other physicians would get mad at lack of follow thru 5/

so would I. I was so scared she would die. It’s so different with Dr F he has invested, he has listened & what that means is that trust has been est. they’ve had some hard talks, some necessary talks that could never have occurred if he hadn’t invested in her. I remember 6/

clearly how one of her #physicians had sent a letter saying he was discontinuing with her bc she didn’t trust him. I had spoke to this doc personally & explained it would take time as she did not trust doc (she has PTSD due to medical trauma). It did not matter 7/

the expectation was she must trust him - immediately. Why would she trust any #physician. Because of the investment her current doctor made there is progress. They are starting to really be able to address all significant health issues & other team members have 8/

been added to team. I have seen this cycle commonly in those that have had chronic illness & youth & experienced medical trauma. I am still confused why physicians did not understand her behavior when I explained concerns. Many physicians did not have time to invest 9/

So in conclusion this podcast has me weeping. I wish all physicians would invest like this. I am so appreciative of this physician. You definitely need to listen to this podcast. I am also going to get the book. FYI posted w daughters consent. She read the thread 10/

She mocks how I write but is ok with what has been said 11/