For most of us, breathing is something we do effortlessly without any thought or awareness. Even during strenuous activity, we’re able to take deep breaths and recover our subconscious state of breathing within a short period of time. But not with COVID-19.
When I was infected with COVID-19, I felt like I had rubber bands wrapped tightly around each lung. Each breath took all my body’s strength just to push through the resistance in my chest and fill my body with air.
As a child, I suffered from asthma. When I had an asthma attack, I couldn’t breathe. While this was a frightening experience, the danger was clear: I could not breathe until I was given my inhaler, at which point I would be able to breathe again.
With COVID-19, the danger felt much more uncertain. And that uncertainty was terrifying. Would I have enough strength for the next breath? Would those invisible rubber bands finally squeeze all the air out of me? Each breath felt like it might be my last. Might.
Breathing problems were the worst symptom of my infection, but they weren’t the only symptom. I had a fever with seemingly endless sweats. I experienced crippling coughing fits. I felt an exhaustion that permeated my bones. Eventually, I was forced to seek medical treatment at a hospital.
Through all my pain and suffering, I was completely isolated from other human beings. My family couldn’t come comfort me. My friends couldn’t check in on me to see how I was doing. I would’ve loved to see a smile on the faces of the doctors, nurses, and other health care professionals tasked with keeping me alive, but they were all forced to wear masks and protective covering from head-to-toe.
Everything about my battle with COVID-19 was scary. But the scariest part of my experience happened when I returned home from the hospital.
My privacy and safety at risk
Upon being discharged from the hospital, I informed the property manager at my apartment complex that I was being treated for COVID-19. The property manager in turn notified the other residents that someone in our complex had been infected with the new coronavirus. Within days, many of the residents began demanding to know the identity and apartment number of the victim. They wanted to know my identity and apartment number. A few even moved out of the complex for fear of their own safety.
My heart dropped. What would these people do to me if they found out about my infection? Would they demand that I leave my home? Would they harass me if I refused to leave? Would they hurt me? Should I call the police? Would the police even help me?
My instinct told me to escape. But how? After all, I could barely get out of bed. I was struggling with a fever, and my breathing was at its worst. I was physically incapable of driving. And even if I could drive, where would I go?
The truth is that my apartment was the safest place for me to be. If I left my apartment to protect my own safety, I would risk hurting the people I care about most. My mother is in her sixties. My siblings have children. By staying in my apartment, I could isolate myself from other people and prevent the possible spread of COVID-19.
Fortunately, my property manager refused to give out my personal information, protecting me when I was too vulnerable to protect myself. And by protecting me, my property manager also protected everyone else in my community — a brave act for which I will always be thankful.
Take this seriously
My infection with COVID-19 has been a struggle. Even today, I still feel like I am still healing from the physical repercussions of my infection. Yet I feel lucky and I feel privileged. I was able to be treated for my illness. I was able to take time off of my job without fear of losing my employment. I was able to self-isolate without infecting others. My property manager was willing to sacrifice paying tenants in order to protect my privacy and safety.
Millions of people aren’t so lucky. Their stories will have a very different outcome. Right now, we have almost no policies in place to protect the privacy and human rights of people suffering from COVID-19. Testing and treatment options are still at a shortage, even for those working on the front lines in hospitals, grocery stores, and other essential businesses. Unemployment cases grow by the millions each week.
Governments and corporations are pursuing plans, some well-intentioned and some clearly exploitative, to expand surveillance and monitoring of our movements and interactions. There are currently few laws in place to prevent abuse. In some states, health officials have been sharing the home addresses of people who test positive for COVID-19 with police, something that could deter people from getting tested at a time when we urgently need as much testing as possible. A surveillance company has been offering free drones to police, who are using them to monitor whether people are social distancing and shout orders at homeless people instead of providing them with adequate housing and sanitary facilities.
It’s essential we take this seriously. We need policies in place to protect everyone, including those with COVID-19. We cannot leave it up to individual property managers, employers, governments, and others to determine when it’s okay to share personal information of someone battling COVID-19. If my property manager had decided to share my home address, it definitely would have placed me in a vulnerable, potentially dangerous situation. To fight COVID-19 effectively, we also have to fight for basic human rights and civil liberties.
Sign the petition
I work for a non-profit organization called Fight for the Future. A few weeks ago, we launched a campaign to defend privacy and human rights while preventing the spread of COVID-19:
It’s imperative that we do our part to stem the threat of the virus, and also to fight back against threats to our basic rights. To keep everyone safe, we must do both.
Many people battling COVID-19 are already fighting for their lives; they cannot fight for the rights as well. We must do it for them. At TakeThisSeriously.org, you can pledge to protect public health and to hold leaders accountable for protecting privacy and human rights. I encourage you to sign the petition and take that pledge.
I am better now. The virus has passed. I’m in the early stages of recovery and will be quarantined for another ten days. Even now, after everything, I am still scared to reveal my identity. I’ve been an activist and advocate most of my life. I know the importance of visibility and the role it plays in getting the attention needed for change. Yet, I write this anonymously because I don’t trust the situation. I hope we can work together to change that.