Delaney's Voice

I’m an Immunocompromised Person. Here’s How I feel About the Coronavirus.

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The immunologist I see is at a children’s hospital, so I get stickers when I go see her. When I went to be evaluated for self-quarantining, I took one that says “Careful with hugs!”

As an immunocompromised person, I was nervous when I heard about the Coronavirus. Of course, though, I tried to ignore the hype as much as I could. Sadly, I had more pressing medical concerns. When news of this broke, I was waiting on results from some lung tests to tell me if, in addition to everything else, I had Interstitial Lung Disease. Thank goodness, we now know that I do not.
I fielded messages from friends and family, all asking, “Are you scared?” (Yes.) “What are you doing to prevent it?” (Same thing I always do. Wearing my mask in public when I can. Using hand sanitizer. Washing my hands for two “Happy Birthdays.” Trying not to touch my face. Avoiding people who are sick. Wiping down shared electronics at work. Not shaking hands.) “Do you think you could get it?” (I can catch pretty much anything, and so far, my body hasn’t given me any reason to doubt that.)
A few days ago, though, I noticed I felt sick. I often do. I have a disease called Common Variable Immune Deficiency, and, in my case, it’s not responding to treatment. Basically, what that means for me is that I get sick a lot, and have trouble getting well. I get fevers a lot. I have widespread inflammation throughout my body, and I can’t develop immunity to illnesses, even ones I’ve had already or have been vaccinated for. I can still get Chicken Pox even though I’ve had it before. I can still get Polio even though I’ve been vaccinated for it.

So, when I checked my temperature and saw I had a fever, I wasn’t too concerned. To be safe, I went to Urgent Care, and they weren’t able to do much but rule out the flu. They said I needed to see my regular doctor if things got worse.

 

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They have. I started feeling out of breath and exhausted from doing normal activities that shouldn’t make me tired. My medical student partner started monitoring my oxygen levels and temperature religiously and got more and more concerned when things didn’t improve. We decided the best course of action was to see my Immunologist.

When my immunologist and her staff were concerned, then I felt the worry I’d been pushing down for days.

“We can’t test you for sure,” my doctor said, “But, you are presenting symptoms. You should self-quarantine for two weeks.” There are no tests available where I am. This is unfortunate for everyone. The CDC can’t provide tests to the people who need them, even, in some cases, those who need them most.

Just hearing that made me want to claw at the walls. I’m a university reference librarian, and nothing makes me happier than working with students. I love helping them with their papers. I love the spark of joy in their eyes when I help them find the perfect source, the sigh of relief when they realize that help is there, and they don’t have to carry the burden of research stress alone. I love my colleagues. My fellow librarians are some of the greatest people I’ve ever met. I can’t imagine not seeing them for that long. Moreover, I hate being cooped up. Not leaving the house for a day is nearly unthinkable to me. Being home for too long makes me depressed. I like people. I like the outside. I love this world, even though it can make me sick. Inside, I was screaming, but I just said, “Okay.”

I know I could get other people sick. I know even if I don’t have Coronavirus, the virus I have is something else that’s serious, and I’m even more likely to get the Coronavirus if I go out in public. My already weak immune system is even less strong now. But I’m devastated, and I’m angry.

I’m angry tests aren’t available here, even for people like me, who could die easily if they have Coronavirus and it’s undiagnosed and untreated. I might need more severe care, and we don’t know. I’m terrified that I now must be stuck in my house with little contact with others, as my mental health suffers from confinement. Most importantly,I’m wishing I hadn’t binged “Santa Clarita Diet” last week, and still had that to look forward to.

coronavirus-4914026_640I’m wishing I’d done a lot of things differently. I’m grateful that my job is handling the situation with compassion and care. I know many are not so lucky right now. I’m very thankful that I live with a medical student who can monitor my symptoms, and that she will be there for me, and bring me pizza upon request. I’m thankful for her sister, bringing us groceries and leaving them on the doorstep to make sure we have what we need.

Still, I am filled with terror and anger. As the death toll and infection rate rise, I feel worse. I keep hearing people, especially in the U.S., saying that the public isn’t taking this seriously enough. I don’t think that’s true. The people in power aren’t taking it seriously enough, and they’re trying to make us believe that’s okay. Nobody wants to believe we’re living in a time of a pandemic, especially when we live in a society that pressures people to go into work sick, and forces us to pay high medical bills. Some can’t afford to go to the doctor even to get a doctor’s note verifying how sick they are so they don’t get fired. Those people are usually also the ones who need to do jobs that put them at high risk for infecting others: food service, retail, etc. That’s part of why when I get sick, I never feel mad at whoever infected me. It’s a sign that they’re being forced to prioritize productivity over health, not that they’re selfish.

As I’m quarantined, I’m trying to remember to look for the helpers as I learn more about the virus. People are donating masks.

Companies in Japan making manga free to read online so people who are quarantined may be less bored. I wish they were the people with more power to control the outbreak, but there are so many people trying to help.

2 replies »

  1. It’s heartbreaking that you have to go through all you have and now this. Thank you for sharing your story. It put things in perspective. I’d be curious to hear updates on how you are doing.

    Like

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