How It Feels to Be Young And High-Risk During The COVID-19 Pandemic, Pt. 1
You’d be hard-pressed to find anyone who isn’t frustrated, anxious, even downright miserable as a result of the unprecedented global health crisis we have faced this year. It has been bizarre and terrifying, to say the least. We have all been inside for months, dealing with the pressures of life and work without our normal outlets for stress relief, or even worse, some have found themselves jobless as a result of the economic shutdown while newly responsible for home-schooling their kids-—all with a deadly virus on the loose.
As a person with chronic illness, these feelings have been amplified by the fact that I am at high-risk of both catching and suffering complications from COVID-19.
When you don’t “look” sick
I am a young person in my early thirties who does not “look” sick, but I am. My chronic disease, ankylosing spondylitis, requires an immune-suppressing medication just so that I can get out of bed without being in excruciating pain, and it puts me at risk of contracting all kinds of infections as well as dying from them.
Every day during this pandemic, I have feared for my life, with every interaction I’ve had--even when my pharmacy’s delivery service rings my doorbell to drop off my medication and I have to sign for it. Something as benign as answering the door or taking an elevator with someone not wearing a mask could be fatal for me.
I have been doing everything I can to stay safe
I have left my apartment a total of five times since March, scrubbed my hands to the point of them cracking, and stayed closely on top of the developing news each day-—not because I enjoy looking at death tolls but because my life depends on remaining informed. And no one would know this just by looking at me.
But here’s what has been even more soul-crushing than knowing that if I caught COVID-19, there is a significant chance I wouldn’t survive it: Knowing that some people don’t feel that my life is worth saving. They are not willing to do the bare minimum to keep me, and people like me, alive. That might sound harsh but it’s the honest truth, whether or not they realize it.
The rage of watching people ignore the rules
Watching some people blatantly ignore the stay-at-home orders, the face mask mandates, and social distancing as a whole from the beginning of the pandemic has been sobering. I have observed people I know, and people I don’t know, suggesting it is too great an inconvenience to take protective measures in order to literally save someone's life.
I am talking about those who refuse to wear masks, feel the need to spread conspiracy theories about the origin of coronavirus, and complain as though staying inside or away from others is the worst thing in the world (let me remind everyone that the chronically ill have been forced to do this for years, way before the coronavirus swept the globe!).
My social media feed makes me angry
On my social media feed, I’ve been enraged to see house parties, family gatherings, and unnecessary trips to browse the aisles of Target. In the news, I’ve seen people gathering in crowds without masks as the weather warms up, leaving the immunocompromised and other high-risk groups to wonder our fate in a world where average people are not concerned whether we live or die.
And perhaps the most disturbing: a few people I have personal relationships with think the pandemic is a “hoax” or a ploy to force mass vaccinations. When more than 100,000 people across the nation have died from the virus, how could anyone deny it?
I wish everyone knew what it felt like to be high-risk
If the whole world knew what it felt like to be high-risk, everyone would be using any means or tools available to protect themselves from this threat. When your very survival depends on how others behave, and they behave selfishly and harmfully, you feel like your life is worth nothing to them. But it's not just rule-breaking people who have unnerved and disappointed me as a high-risk person in the community.
Editor's note: Read part 2 here.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?