My Name is Lene, and I'm at High Risk for COVID-19

My rheumatoid arthritis puts me in danger of developing serious complications from COVID-19. It’s a really scary place to be.

by Lene Andersen, MSW Patient Advocate

Just about the only comforting news we hear about COVID-19 is that most people who get it will have only mild symptoms. Except, that is, for a small group of people who are at high risk for complications and death from the disease. This high-risk group includes people living with chronic illness—people like me. By about the ninth time I heard “most people will have only mild symptoms, unless they have underlying health issues,” it started to sound like no one was really worried about me. As if my life was disposable.

Four years ago, complications from the flu almost killed me. Thanks to my rheumatoid arthritis (RA) fibromyalgia, disability, asthma, and being immunosuppressed by RA meds, I catch viruses more easily and get sicker than others when I do. In 2016, I caught the H1N1 flu and soon became very ill.

After a week of getting increasingly worse, my breathing was affected. My doctor diagnosed pneumonia and sent me to the hospital. There, my ability to breathe continued to deteriorate and the pneumonia developed into acute respiratory distress syndrome (ARDS), a type of lung failure with a mortality rate as high as 50%. I was put into a medically induced coma and placed on a ventilator. I very nearly died. And when the ventilator was removed, I actually flat-lined for several seconds.

It was a slow recovery, both physically and mentally, but I did recover. I was back to work after a month, but it took a few years to get all the way back physically. I still appreciate and celebrate how lucky I was to survive. That is, until the appearance of coronavirus yet again brought memories of my trip to the ICU back in full force. Especially because one of the main COVID-19 complications that kills people is ARDS.

I try to cope by balancing my fear of this virus with advocacy to help others understand its seriousness and the importance of physical distancing to control the spread. And here, I am part of a much larger movement.

During the early days of coronavirus spreading, there was a wave of concern in the online chronic illness community. People living with various long-term illnesses witnessed a collective shrug from the healthy population—people who thought they themselves were safe from COVID-19, dismissing their responsibility to protect those vulnerable. In response to this, Molly Schreiber, who has both RA and type I diabetes, created the #HighRiskCOVD19 social media campaign. I reached out to Schreiber, who lives in Baltimore with her husband and two teenagers, to learn more about the movement:

HealthCentral: Why was it so important to start the #HighRiskCOVID19 campaign? Were you the driving force behind it or was there a group?

Molly Schreiber: As a chronic illness patient, it was really frustrating and disheartening to see those at high risk not being valued in regard to the coronavirus. I felt I was spending too much of my time and energy trying to educate the public. After looking through Twitter, I messaged a group of advocates who I felt were trying to push out the same message as me, asking for their thoughts on starting a campaign to put a face and a story to those at high risk. We agreed to start it on the evening of March 14th and had no idea how quickly it would take off.

HC: What kind of feedback did you get from the chronic illness community?

MS: Immediately people starting sharing their stories and their photos on Twitter with the hashtag. It was incredible! At one point we were trending at #2 in the U.S. Even now, a month later, people are still sharing their stories on both Twitter and Instagram.

HC: How have people outside the chronic community responded?

MS: As much as I love seeing the photos of people with our hashtag, the responses from those not necessarily high risk have been some of my favorite interactions. I have received tweets and messages from people saying they had no idea how many people had a chronic illness but "looked healthy." They had no idea how much their self-isolation could help. I think it's really put into perspective how much of the population has a health condition and how it affects any age, ethnicity, or gender.

HC: How can people participate in the campaign?

MS: People can easily join and support the campaign on Twitter by using #HighRiskCovid19 and following the @highriskcovid19. You can also use the hashtag on Instagram and tag our account @highriskcovid19.

Like many of the high risk people with chronic illness Molly told us about, I am doing my best to reduce my risk of catching COVID-19. I’m self-isolating at my home, resisting the siren call of an emerging spring and the need to see other people. But even though my government suggests I stay here, there are still moments I need to go out. I’m surrounded by an urban downtown core, where avoiding other people is impossible. I try to keep the recommended physical distance between me and others, cover my mouth with a scarf, and wash my hands and groceries when I come home.

But still, I can only control so much and it’s scary. I rely on my friends, family, and perfect strangers to heed the warnings and isolate themselves. When they do, they help me and others stay alive. I’m thankful for the thousands of high-risk individuals from all over the world are raising their voices in the #HighRiskCOVD19 campaign to make sure that the message is heard. It’s how we’ll get through this.

You can learn more about Molly Schreiber's advocacy here on Twitter, Instagram, and Facebook.

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, facebook.com/rahealthcentral. She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.