Most mornings, I wake up and do a quick physical assessment: Does my chest hurt? Do I have a fever? Are my lymph nodes swollen? My ears or eyes inflamed?
No, I’m not asking myself these questions because I fear I have coronavirus. They are part of my everyday routine and reality as a person living with two autoimmune diseases. The first disease, lupus, was diagnosed about seven years ago. The second—a far more rare condition called relapsing polychondritis, which attacks the cartilage in my body from my nose and ears to my ribs—has become more difficult to manage since my diagnosis in 2017.
These chronic and incurable diseases make me immunocompromised—a term that's often used interchangeably with immunosuppressed—because my immune defenses are weakened and do not function normally. That puts me at a greater risk of infection from bacteria and viruses. To make things worse, the medications I take to help fight my conditions further suppresses my immune system. Among them is methotrexate, a chemotherapy drug that purposely suppresses immunity so my own body won't attack itself.
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We immunosuppressed patients are in the spotlight now, thanks to the COVID-19 outbreak. The elderly, cancer patients, those with organ transplants, and people like me with autoimmune diseases are disproportionately affected by the virus. Not only are we more likely to contract it, but we’re also at a much higher risk for serious complications. Simply put, we are much more likely to die from coronavirus.
Most of the time, those of us who are immunosuppressed—roughly 4% of the US population—aren’t easy to spot. We don’t wear uniforms or labels or identifiers, we don’t always look sick, and many of us are out living our lives like those who aren’t afflicted. I’m a 35-year-old woman, one who often gets labeled as “young and healthy,” but in reality I have an immune system that can’t tell the difference between my body’s healthy tissues and dangerous foreign invaders—like viruses and bacteria—and so creates antibodies that attack and destroy those healthy tissues.
Here's how my body reacts to common illnesses: My husband caught a cold and passed it onto me, and it progressed to bronchitis and then walking pneumonia. A stomach bug my best friend and I both had at the beginning of the year made her sick for a day, but it made me vomit more than 20 times, required hospitalization with IV fluids and drugs, and put me out of commission for a week. Infections take weeks to fend off and often flare up my autoimmune conditions, which puts me at risk for further complications.
So I’m always on alert. I was stocking up on soap, hand sanitizer, and Clorox wipes before it was cool. I make my husband open all doors for me in public, not because of any demand for romance but because I don’t want to come into contact with any germs. Each purse and bag I own has its own hand sanitizer, tissues, and pen, so I don’t have to use the ones at restaurants, stores, or doctors’ offices. I always ask for a straw when I'm out to eat so my mouth doesn’t touch a glass that’s been handled by others. After handshakes, I often make my way to a sink, washing off the greeting.
During flu season, I refused hugs from my friends, who give them out in abundance. It goes without saying I avoid people who are sick. Those closest to me know to tell me when they’re recovering from a cold or their kid has a cough or their husband a fever.
But I can’t say I don’t live life on my terms. I’m not constantly worried. I travel frequently, both for work and for pleasure. Before the coronavirus changed our reality, I attended plays and concerts and NBA games, and I loved it all. I want to live my life in the fullest way I can, especially a life estimated to be shorter than most because of my conditions. But I also am careful and smart in ways I can control, because choosing to live richly is only good if you have a life left to live. Unfortunately, what I cannot control is how others act when they’re sick.
In some ways it makes me happy that COVID-19 has drawn attention to those like me with compromised immune systems. I’m glad people understand that although many of those afflicted will get mild symptoms or even be asymptomatic, the virus is life-threatening for people who aren’t so healthy. I’m glad people know they should self-quarantine if they’re sick—and that they should avoid other people, shouldn’t shake hands, see friends, or board an airplane.
I’m glad that events have been canceled to try to flatten the curve, that masks are encouraged, that communities and companies have come together to keep people safe during the crisis. But I also understand that this is a rare, extraordinary moment in time. And because of protests and calls to “liberate America” from stay-at-home orders, this moment may end sooner than it should.
A great deal of the overwhelming care and concern for others that took root during the beginning of the pandemic has now been replaced by crowded beaches, complaints about staying home, and the large congregations of neighbors drinking and chatting together I see on my evening walks with my dog. I worry that when the coronavirus panic winds down and public spaces reopen, when the government isn’t mandating closures or urging social distancing, when people are no longer afraid and look back at the quarantine and say, “well that was crazy,” that life will look the way it did before coronavirus hit.
People will return to going to work sick and seeing friends when they’re recovering from the flu and attending a concert or sporting event when they’re under the weather because “they aren’t that sick” or “they want to get out of the house.” They won’t be worried about it because they’re healthy and in all likelihood they’ll get over their illness. They’ll forget all about what that means in the context of the elderly or the immunocompromised—people like me who can get a cold that always becomes much more than a cold.
When the coronavirus cases drop and life gets relatively back to normal, please don’t forget about those at-risk individuals all around you and what it means to be sick around them. Because for many of us, being terrified of getting sick isn’t just a coronavirus thing; it’s our constant way of life.
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Kathryn Mayer is a Colorado-based journalist.