Thread by @broadwaybabyto

When my mom was dying of pancreatic cancer (after being misdiagnosed as “anxious”) I remember us talking about how at least when I got to be her age… things would be better.

20 years later and things haven’t gotten better - and the pandemic has arguably made them worse. A 🧵/1

When my mom was sick we both genuinely believed that healthcare would improve considerably before I had to face serious medical challenges. It was one of the small comforts we had in a very dark time. /2

I thought we would have far better diagnostic tests but also more equitable care for women, minorities & other marginalized individuals. It's heartbreaking to realize that isn't the case. /3

Whatever progress we DID make seems to have been completely wiped out by the Covid pandemic. It has created a further divide between patients and doctors. Many patients have been labelled anxious for masking - or for requesting providers mask. /4

This rush back to normal and society wide desire to deny the pandemic is leading to more patients being misdiagnosed or diagnosed too late. Many are scared to go to the hospital & risk re-infection... and when they do go they're labelled anxious for being concerned about covid /5

This problem isn't limited to Long Covid. It will impact everyone with chronic illness and even those with more "recognizable" concerns such as cancer or emergent surgical needs like appendicitis. Patients have always struggled with being brushed off as difficult or anxious .../6

And now Covid has given HCW's one more reason to do that. That's what the pandemic has gifted us. It could have been a unique opportunity to raise awareness about how patients are treated. It could have shone a light on the inequity that still exists within the medical system. /7

Unfortunately it seems to have led to more patients being ignored, feeling like they have to choose between masking and being taken seriously.... And many more patients joining the ranks of people disabled by chronic illness. /8

I still have hope that things will change - but some days are harder than others. I firmly believe no patient should have their care impacted because they're wearing a mask or because they want those treating them to mask. It's why I believe we need mask mandates in hospitals. /9

I also believe that all patients need and deserve an advocate to help them navigate the healthcare system. In a perfect world we would all have someone to fill that role - but we don't live in a perfect world. /10

I hope in the future we examine ways to have volunteer networks that can accompany patients to the hospital if they don't have friends or family to go with them. /11

Lastly I want to remind everyone - patients & HCWs alike - that anxiety is an actual diagnosis. It has criteria that must be met & is not a word that should be thrown around lightly. You may be using it as a descriptor - but that descriptor can & does impact patient care /12

Please do not use it lightly & don't lose sight of the fact that if a patient is sick, vulnerable and in pain it is completely normal for them to seem anxious.
Hospitals are scary places - and being vulnerable is an unsettling feeling. Patients need compassion - not judgement /13

I don't have easy answers but I am inspired by all the replies I received from people who've become fierce advocates for themselves or their loved ones after going through an experience like I went through losing my Mom. /14

Just like I'm inspired by the HCWs who recognize that protecting oneself from Covid does not make you anxious - it makes you smart. To all of you still masking & to those who genuinely listen and go the extra mile for your patients...
Thank you from the bottom of my heart. /15

I believe these stories aren't told enough - and the more we bring them into the light the more we will start to see change from within the system. Patients will learn the importance of advocacy... and HCWs will learn how badly we need them to listen. / end