I talked to a researcher yesterday who is new to #PostViralIllness.

He was not aware that I live with it either.

Had we used Zoom, he might have seen my reality, as almost all meetings are from my bed.

I planned to tell him but he launched into his views quickly and..

1/?

...they weren’t very current. He shared this his belief is that all patients are exaggerating their experience and he thinks it’s mostly psychological.

I stayed very calm as I waited for my turn to share some of the current research that shows that that just isn’t true.

2/?

Just as I was about to talk, we were interrupted and we had to reschedule.

So now, I have to try to let go of the feelings that this brought up and ensure that I can once again come to the meeting ready to create space for someone, who isn’t ready to create space for me.

3/?

I share this because I hope that the wonderful researchers & policy makers that follow me will understand what it feels like on our side of the table.

Emotional intelligence and comms skills are so important. Especially when working with vulnerable populations.

4/?

We are always expected to “stay calm” and “be productive”, no matter what is thrown at us. Especially as women. Certainly as advocates and patient partners.

This work is hard. Especially when you’re this sick and the neglect and gaslighting is prevalent.

5/5