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How #HighRiskCOVID19 Is Connecting a Community During the Pandemic

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As a woman living with lupus, rheumatoid arthritisfibromyalgia and other autoimmune conditions, I had hoped to write an article for The Mighty this month because March is Autoimmune Awareness Month. I had no idea that being a person with autoimmune conditions would make me a part of the vulnerable population. While scrolling through my Twitter timeline last week, I began to notice a new hashtag, #HighRiskCOVID19, and I wanted to learn more about it and the patient leaders behind it. I reached out to Molly Schreiber and Jed Finley for insight and a quick interview.

Who came up with the idea for the hashtag?

Molly: As a chronic illness patient it was really frustrating and disheartening to keep seeing those at “high risk” being brushed off with regards to the coronavirus. I felt like I was spending so much time and energy trying to educate people. I messaged Joe Coe of and asked if he thought my idea of putting faces to the immunocompromised was ridiculous. He, of course, said no, and that’s when I reached out to our group. We threw around some ideas in our group and landed on #HighRiskCovid19 because it really stated our purpose in the least amount of characters. So glad that Charis Hill melded all of our ideas together!

How did the organizers of the account come together?

Molly: Honestly, I didn’t overthink who I messaged that day. I looked for advocates that seemed to be trying to spread the same message as me, who were aligned with (because Creaky Joints gives out factual information about the disease and is a trusted resource), and who I hadn’t worked closely with before. Honestly, this group became instant family. It’s amazing. Aside from the people we’ve reached, the connection we’ve made in our small group is priceless.

When did you decide to start an account?

Jed: Starting an account was Dawn Gibson’s idea. She pitched the idea to the group Tuesday night, and I scrambled to grab the handle before anyone else did! Fortunately, it was still available. From past experience when something goes viral, people want to snatch up as much as they can. We were happy we could call @HighRiskCovid19 our own.

What are your plans for the account and hashtag?

Jed: Because our popularity was going worldwide and countless people were using the hashtag as their own, we wanted to set up a place where people who are at high risk could have a central place to meet. That is our hope for the account @HighRiskCovid19 that we can use it to reach out to people who had used the tag and check on them during this time, but we also want people to have a place to go to get information and ask questions during this uncertain time.

How can people who are #HighRiskCOVID19 join the conversion and community?

Jed: Follow the @HighRiskCovid19 handle on Twitter and post using the #HighRiskCovid19 tag. Share your stories about how being immunodeficient puts you at a higher risk of catching any virus. The media paints this picture that only old and sick people are at the highest risk of catching COVID-19. The media tell us that if you are young and of good health, you are fine. This simply is not true. The purpose of #HighRiskCovid19 was to let the world know there are other groups out there who need to be protected as well. So, write posts, make videos, share your story in a blog. Whatever you need to do. Just use the tag
so we and the world can find your story.

Connect with @MollySchreiber @JedFinley and Amanda @LAlupusLady Greene on Twitter.

Originally published: March 22, 2020
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