Never meet your heroes

Hey friends. It has been a while. I’m still not dead but I am still trying to figure out how to manage my life with not nearly enough spoons for my every day life.

Some things have gotten better and some things are a bit worse. Ever since Christmas break, I have been struggling with my daily schedule.

I’m also still struggling mightily to get appointments with doctors. No one is responding to my requests to schedule an appointment. And my insurance dropped my primary care doctor. The one doctor I have who is still responsive.

I have had a couple of new ideas pop into my head about how to get help with some of the work and home tasks that I am struggling with. So, hopefully I will have some positive updates soon.

Concerning the doctors, I’ll keep trudging away at it.

But, what inspired me to come and write this post was learning an upsetting fact about someone I really respected.

Survivor Corps was one of the first covid support groups I learned about and I was really happy to find a community there. I have been drifting farther from that group lately because it is for all covid survivors and their families and I started drifting towards groups specifically for longhaulers like me.

But, I still respected the organization. Recently a fellow longhauler posted on TikTok that she was having a hard time finding a doctor to take her post exertional malaise seriously. She vented on Survivor Corps’ page and the founder of Survivor Corps responded to her and denied that post exertional malaise is real and advised the poster that she should just exercise.

Post exertional malaise is very real. I have battled it myself. I also know that you can’t just push through post exertional malaise. That’s a good way to make yourself worse.

I can’t in good conscience support someone who gives such wreckless advice. I removed Survivor Corps from my link page. I kept a link to their Long Covid Center list. But, I am no longer recommending the organization as a support group.

I instead recommend Body Politik’s support group, whose information you can find on my link library page, and the Facebook group called “Covid 19 Longhaulers Discussion Group” linked here: https://www.facebook.com/groups/COVIDLongHaulers/?ref=share

I will always respect the excellent work that has been done by Survivor Corps. But one policy that seems to have been forgotten is that we are not doctors. We are supposed to share resources and support each other. That is what we’re supposed to do.

It seems like Survivor Corps may have lost its way a bit. I hope it finds its way back

#longhauler #supportgroup