Updated: Aug 4, 2020
April 13th, 2020
I first started to get worried about COVID-19 in early March, when the number of cases started ticking up on the coasts. I live in New Mexico and am especially grateful for our governor’s proactive response to the current pandemic, which included closing school systems and nonessential businesses in mid-March. In-part because of her response, I’ve been working from home since March 17th. For me, that transition is a significant source of relief.
What does the Coronavirus Pandemic mean for me?
Before I received my directives to stay home, and even to a lesser-extent now, I worry about how my risk during the pandemic may be different than a 30-something-year-old without a pre-existing autoimmune condition. I worry that Ankylosing Spondylitis puts me at an increased risk, not for catching COVID-19, but for more serious symptoms or prognosis. More importantly, I worry that my biologic medication and my corresponding immunosuppressed status may put me in that ‘vulnerable population’ category.
There’s also a tendency to use the terms ‘immunosuppressed’ and ‘immunocompromised’ interchangeably. I fall in the ‘immunosuppressed’ category because I take a TNF inhibitor that purposely suppresses part of my immune system, which makes me “at highest risk for mycobacterial infections such as tuberculosis.” But as the Spondylitis Association of America points out, different biologics have “different infectious risks.”
My own experience on biologics may be different than yours. Even though the biologic I take is an immunosuppressant drug, I don’t tend to get sick any more than anyone else. Like I said, that’s just me. It is worth acknowledging an interesting fact when thinking about your coronavirus risk with AS: “People who are HLA-B27 positive demonstrate increased natural immunity toward a number of viral infections, such as HIV-1, hepatitis C and influenza.” There’s no research that suggests this may also be true with the coronavirus, though there’s no evidence against it either.
I’m not a doctor, so I have no medical knowledge to draw on to answer these questions. Also, the COVID-19 virus is so new that there’s little research to support an answer, one way or another. But that doesn’t mean there isn’t some useful information out there. Here’s how I’ve been dealing with the uncertainty surrounding the pandemic.
“People who are HLA-B27 positive demonstrate increased natural immunity toward a number of viral infections, such as HIV-1, hepatitis C and influenza.”
What I’m Doing to Stay Safe:
Day to day life has changed drastically lately, and it’s easy to feel a sense of cabin fever. I try my best to lead a normal daily life, even though circumstances are anything but normal. But I find it important to focus on what I know, and what I can still do:
Continue to exercise and stay active
While I can’t travel to a state or national park for a hike or a camping trip, I can still get exercise in my neighborhood. My wife, dogs, and I get out often to enjoy some fresh air and loosen up my joints. It’s important to get exercise with AS, and stepping outdoors for a bit each day is a great way to recharge.
Follow strict hygiene practices
Everyone should follow strict hygiene practices, wash their hands thoroughly, wear facial coverings in public, and follow all other CDC guidelines. I try to be especially strict, since I just don’t know what would happen if I caught the coronavirus with my chronic illness.
Find activities to relieve stress
Life with a chronic illness is stressful enough, but with the pandemic this is an especially stressful time. Relieve stress by doing something relatively mindless, or something that you enjoy doing. For me, my artwork is my stress relief.
Seek a community
I make sure to find someone I can talk to, especially someone who also worries about the coronavirus and their chronic illness. Community means support.
Continue to do research
It’s important to be able to tell fact from fiction, especially now. I don’t get my information from Facebook. I also fact-check the information I do receive, and not just information about the coronavirus and chronic illnesses, but any information regarding the pandemic. Don’t fall for quick fixes or underestimate the risks associated with the virus.
What I’m Trying Not to Do:
Keep focus on the positive--that’s crucial. Also, avoid making rash decisions because of uncertainty, fear, or lack of information. Here’s what I’m trying NOT to do:
Panic or succumb to worst-case scenarios
I’m not easily taken in by conspiracy theories in general. In strange times, it seems like radical theories and scenarios are popping up all over the place. But these theories aren’t comforting--they just lead to more fear and anxiety. Instead, my focus is on the day to day, and I ignore grand or outlandish predictions.
Make medication decisions without consulting my doctor
I considered whether I should get off my biologic, but I didn’t want to make rash a decision to change my treatment plan without discussing it with my doctor. If you have concerns, reach out to your physician and see what she recommends.
Take unnecessary risks
I take precautions a step further than what my governor and the CDC recommend, just to be extra careful. I try not to put myself in a position that involves unnecessary exposure to others or unnecessary risk. I try to visit the grocery store as infrequently as possible, keep six feet of distance while passing someone on the sidewalk, and avoid take-out food or anything that will mean more contact with more people.
Isolate myself socially
Keeping in contact with friends and family is especially important now, when in-person visits are not advisable. I practice physical distancing, but not necessarily ‘social’ distancing since I can still have social interactions that don’t involve physical gatherings. For as long as this lasts, keeping up those social interactions will help stave off isolation and loneliness.