For someone who has symptoms of coronavirus — fever, cough, shortness of breath — getting tested seems like the responsible thing to do. But one major challenge has been getting tests to people who need them. As of March 11, over 11,000 coronavirus specimens have been collected in the states, but public health experts note that multiple specimens may be required per person. Further, as Politico reported, a shortage of lab testing materials may delay COVID-19 diagnoses. Overwhelmed by demand, doctors may prioritize testing people who have returned from travel to a coronavirus hotspot or have had close contact with a confirmed coronavirus case within the last 14 days, per Centers for Disease Control (CDC) guidance.
Claire*, 36, lives in New York City, where there have been 62 confirmed coronavirus cases as of March 12. She has been experiencing potential coronavirus symptoms for about a week. Her roommate is a teacher in a school with connection to confirmed coronavirus cases. Claire is also immunocompromised because of her stage IV endometriosis medication. Despite these factors, she says she’s been refused testing at four different medical facilities. She finally got tested for COVID-19 after a week of actively pushing. Below, Claire tells us about her experience.
This conversation has been edited for clarity and length.
Last week, I started having nausea and diarrhea, chest tightness, and a fever. That Tuesday, I went to work, but left halfway through the day to go to the doctor. My PCP said I might have c. diff, a bacterial infection, since I was just on antibiotics for a sinus infection and have had c. diff before. I asked her if she thought there was a chance it could be coronavirus. She said, “We aren’t sure if coronavirus is tied to stomach issues like you have. But if you start coughing, go to the ER.”
I have a compromised immune system, so that's why I'm more anxious about coronavirus than your regular 36 year old. Plus, some of my roommate’s students were in quarantine, and she’d been sick the week before, although without a fever. Her doctor said that she couldn’t get tested, though, because none of her students had tested positive for coronavirus.
Where Do You Go If You Think You Have Coronavirus?
I stayed home on Wednesday, but on Thursday night, I started coughing. I went to the ER when my fever went up to 101. They thought it was a virus, but not coronavirus. I said, “Well, I’m really concerned because I get Lupron Depot, which puts me into medically induced menopause to treat my endometriosis — it’s a form of chemo.” The doctor completely brushed me off and told me I was overreacting.
I saw my PCP on Friday, but then that afternoon, the office emailed me to say they were no longer seeing patients who had a fever. I went to a walk-in clinic on Saturday to follow up. They tested me for the flu, which came back negative, but then they told me the same thing my roommate was told: they couldn’t test me for coronavirus because I hadn’t been abroad, and I hadn’t come in direct contact with someone who’s infected. We argued back and forth. I told the doctor I had a compromised immune system but he said it didn’t matter; the clinic wasn’t going to test me if I hadn’t been abroad.
It’s frustrating because I feel like no one believed me. I called 311. I called New York State. One doctor I connected to through 311 even said I needed to get tested because of my immune system and said she called a public hospital for me. When I got there, they told me to go back to the walk-in clinic — who had already told me I couldn’t get tested there. I can’t get to my primary care doctor, I can’t get to my endometriosis specialist, so who else am I supposed to see?
How Coronavirus Testing Compares To Swine Flu Testing
Meanwhile, I’ve been hospitalized multiple times in my life with respiratory infections. I've had two emergency phone calls recently, one with my psychiatrist and one with my psychologist, because this is bringing back the anxiety I had during swine flu — I tested positive for that back in 2009 and I was put in isolation. It was really scary. I don’t have family members in the city. I have friends and people who care for me, but it’s also no man’s land — no one wants to be around you, and you don’t want anyone to be around you, because what if they get sick?
I thought the doctors I saw were more prepared with swine flu. When I walked into my PCP in 2009, she did a quick test and it came back saying I had swine flu. I’ve had to use Uber to get to these hospitals in hopes of getting tested for coronavirus — I didn’t have a mask, so I covered myself with a scarf. There was no way I could walk to the hospital because even coming up my stairs, walking to the clinics, I was getting winded. That’s not normal for me.
What The Coronavirus Test Is Like
Finally, on Tuesday afternoon, I was admitted to an ER, where they tested me for flu and coronavirus simultaneously — two swabs up each nose. My doctor said she thought I had two viruses: a stomach bug, then a respiratory one. I’ll find out in about five days if I have coronavirus or not, but there wasn’t anything they could give me to treat it, other than fluids. It’s really frustrating to have a doctor tell you that you are sick but can’t give you anything to feel better.
Through my endometriosis, I learned how much you have to be your own advocate. You have to be persistent. If you hear no once and you’re still sick the next day, or if it’s getting worse, keep calling until you get a yes.
*Claire requested only her middle name be used to protect her privacy.
If you think you’re showing symptoms of coronavirus, which include fever, shortness of breath, and coughing, call NHS 111 in the UK or visit the CDC website in the U.S. for up-to-date information and resources. You can find all Bustle’s coverage of coronavirus here, and UK-specific updates on coronavirus here.
