The global outbreak of COVID-19 has caused panic among many, and while some have taken it more seriously than others, it truly takes a community to keep everyone healthy and safe.
Chronic illness patient leader Molly Schreiber shared, “As a chronic illness patient, it was frustrating and disheartening to keep seeing the concerns of those at “high risk” being brushed off in regards to the coronavirus. It was equally frustrating to see otherwise healthy people ignoring CDC recommendations and boasting as to how this virus wouldn’t affect them. I was spending a lot of time responding to posts and thought if we could push our stories out, our message might be heard.”
Jed Finley, an Ankylosing Spondylitis Patient Leader and one of the initial patients to use the hashtag shares “I, along with Molly Schreiber, Charis Hill, Dawn Gibson, Jennifer Walker, and Ray Bouchard knew we could use our loyal social media following to launch this amazing campaign and get all of our stories out there. We knew it would be big, but we had no idea it would go worldwide quite like it did!”
At the time of this post, the #HighRiskCovid19 hashtag has nearly 24,000 impressions and counting. In fact, it’s become so popular that Jed was even recognized on Monday at the post office, evergreen Vogmask in all, by an immunodeficient patient grateful that this group of leaders were raising awareness for those who are at high-risk.
Dawn, a fellow patient leader shared, “I strive to make my life and work about our people. And time after time, patients want, need, and deserve to seen and heard as people who matter, not just as numbers or statistics, but as people who are living lives that count.”
“Now, more than ever, it’s critical to put a face and a voice to the patients who are at the highest risk from COVID-19 so that the general public has a better understanding of who they’re protecting when they follow expert recommendations regarding practices like social isolation,” says Heather Aspell, an Arthritis Patient Leader who followed Molly’s lead in participating in the campaign.
Fortunately, these patient leaders are on the front lines advocating for their communities to keep them safe and well.
“I have been on the front lines for several weeks – since the first moment COVID-19 reached the US via community-spread. I live in Sacramento, where the first confirmed community-spread case was announced in the country. I am supporting my community (both spondylitis and disabled/chronically ill) by raising awareness that the general public should be collectively taking action to prevent transmission to those of us who are high-risk,” says Chronic Illness Patient Leader Charis Hill.
The reality is, everyone must come together to keep Molly, Jed, Heather, Charis, Jennifer, Ray and the thousands of other immunocompromised patients safe and healthy. And though patient leaders continue to exert their energy protecting their communities, it is also important they focus on their own health and needs more than ever.
Jennifer, one of the advocates leading the campaign reminds others, “My advice is this – don’t let other people intimidate you so that you don’t protect yourself like you should. It’s okay to put your foot down and create boundaries. It’s okay to say you don’t want visitors in your home. You are your highest priority right now. Hands down. That also includes resting as needed or turning off news/social media for a break. Focus on doing things you enjoy right now. Catch up with friends. Your physical and mental health are the most important things.”
We encourage all patient leaders to take part in the #HighRiskCovid19 campaign so that together, we can remind the world how important it is to act as one community for the sake of our fellow neighbors.
As a fellow patient leader, if you’re looking for additional resources or ideas on how to lead your community during this challenging time, we invite you to visit the WEGO Health platform for resources dedicated to supporting you and your community.
And as Molly says, “Remember you are not alone- you are one tweet, Facebook post, or Instagram photo away from someone who completely understands how you feel.”
Scroll through to see a small handful of the #HighRiskCovid19 posts on Twitter: