Here’s what over 226 long haulers from my Instagram community said about their vaccine experience

A spontaneous instagram poll led to sharing lived experiences and surprising results

Instagram poll survey from my long hauler community

Okay, so this is by no means an in depth survey but an Instagram poll. But you can take from this what you will.

This survey came about spontaneously on the 26th September.

I'm travelling to Portugal next August for my cousin's wedding (I HOPE to be fully recovered by then). Either way I'm GOING. I cannot keep living like I'm in a cave.

It got me thinking about the vaccine.

I 'should' get it before then. But what if I get worse? Should I get it sooner? Should I get it at all? The perpetual cycle of 'what if's'.

I wondered how others in the community were getting on, so on a whim, I created a few Instagram polls.

Many shared similar sentiments. Others DM'd me their vaccine experience, which I collated in an Instagram highlight called ‘vax stories’.

It led to me connecting a handful of long haulers who have similar symptoms & similar vaccine reactions so they could swap notes!

A shout out to my data expert pal Ashleigh Trinh who created the very aesthetically pleasing graphs for me!

There wasn't any planning involved but I'd definitely plan for it next time, ha.

Summary of results

  • Between 226 - 269 long haulers voted!
  • Overall, between 50%-65% didn't see a change in their symptoms with either vaccine dose (or they couldn't tell if their symptoms were affected).
  • 20%-23% felt that their symptoms improved with either one or two doses.
  • 14%-27% felt worse after one or two doses.

This is contrary to the two patient led survey results (scroll to the bottom), which saw the majority of long haulers improve since having the vaccine.

I was hoping to find that more long haulers had improved from the vaccine but sadly this wasn’t the case. I received more private messages about how much worse they were!?

The results could be down to many variables: this is a smaller sample size and it’s less qualitative because hey, it's Instagram. Nonetheless, it’s important to acknowledge these high level results.

Notes:

  • An average of 243 long haulers voted per Q.
  • I'm not sure why one choice in the polls is green as I hadn't selected any.
  • A dozen non-haulers accidentally voted so I had to fish them out *eye roll*.

All results are to be taken with a pinch of salt, because of course, our reactions are bio-individual.

Thanks to everyone for voting and sharing!

If you're suffering from long covid, I'd love to know your vaccine experience:

  1. Comment in this Instagram post.
  2. Or DM me a summary of your experience, consenting for me to share it on my stories and I’ll add it to ‘vax stories’ highlight.

Our lived experiences ARE evidence — always remember that, no matter what anyone tells you.

Instagram poll results:

A handful of non-long haulers accidentally voted ‘yes’ so I had to fish them out *eyeroll* — this is why the below graph shows 87% voted ‘yes’

Other (more qualitative) patient led post-vaccine surveys:

1) The largest survey of 900 long haulers by Long Covid SOS.

2) Gez Medinger’s survey of 473 long haulers (video below).

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My Long Covid Diaries by Jasmine Hayer

My Long Covid Diaries by Jasmine Hayer

On the biggest healing mission of my life - recovering from the sci-fi nightmare of Long Covid. Writer, Life Coach, Yogi. IG: Jasminehayer_