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Danielle, a 50-something single mother living in Maine, got COVID-19 in mid-March. At the time, she was surprised that she was able to get tested at all, given that she didn’t have the Big Three symptoms (fever, headache, dry cough). She was also surprised that her results came back positive, for the same reason. Her diagnosis proved to be the beginning of a long journey through a churning, overwhelmed medical system. “You get sick,” she says, “and unless you go to the hospital, you have to advocate for yourself every step of the way.”
In early June, Danielle, who asked that we not use her last name, got on the phone and laid bare her COVID experience — including testing and retesting, contact tracing and relapsing, laughing with public health workers and making a doctor cry. Here’s our conversation.
How are you now?
I’m OK, but I was in bed for days. For six days, I was very sick, and then I was sick with relapses for about three weeks. I still have flare-ups.
When you first suspected you had contracted COVID-19, what did you do?
I phoned the local COVID hotline and went through the limited list of symptoms with the attendant. But I didn’t have typical symptoms. I realized they would probably not test me because I didn’t meet the criteria. However, I had no smell or taste, even though that symptom was not yet on the test list. Then I got lucky — even though I didn’t have the three checkboxes (fever, headache, dry cough), they had just gotten in new test kits, so they squeezed me in.
How did you arrange the test and what was it like?
First you call the hotline, and they call you back in a day or so. Then they set up the test. I drove to the test space, which was a tent set up behind an old church, which made it even more spooky. It was like going through a drive-through at a fast food place, but with security everywhere. You pull up, but the tent is hidden in the back. You give your info to the first security guard, then you wait, go to the next stop, give your info to another guard, they call you closer, etc. It’s a slow dance.
Then the nose swab?
The huge nose swab. It feels like it’s going right up into your brain! But it didn’t hurt. It’s like getting water up your nose, uncomfortable but not painful. The technician puts the swab up your nose, gives it a little twist and pulls out. It’s very fast. They also put a clip on my finger to check my oxygen levels. After that, they give you a sheet of paper with basic COVID-19 info, and you’re told to expect a call in 48 hours. The waiting was horrible.
And you tested positive?
Yes. The results are given over the phone, with a doctor present. It’s very quick. They give you the results, then hang up, then another person calls you eventually from another office.
We talked for three hours. I had a lot of questions. On the first call, the doctor is there, but on the second general information call, there is no doctor. But you have to have some faith in the system at that point, because you just want information.
When I told my son, he ran downstairs and didn’t come up for two weeks! I recommend this to anybody with teenagers stuck inside!
How thorough was the contact tracing?
The contract tracing was hard and took forever. Who remembers every person they’ve bumped into, or every store they’ve stopped by? It was like being interrogated by the police, especially during the lockdown, which was so disorienting because all my markers for time and date were gone.
To answer some questions, I had to find receipts from shops and go through my calendar over and over. They didn’t really go back very far, though. Only two weeks, which felt a bit short. And it was hard to be accurate. I felt pressured and anxious, but nobody was too pressuring and certainly not threatening.
I didn’t feel guilty about “dragging other people” into my diagnosis, but I knew some friends would flip out when they got contacted. One person who was contacted, because we were in the same office waiting two weeks before, a total stranger, was furious and blasted me on social media. Contact tracing is necessary, but it does not — or cannot — take into account that everybody lives in a community and that people panic and turn on each other.
What were you told to do next?
Not much. Rest, take painkillers, call 911 if you can’t breathe. That was it.
I was so worried, I went down a research spiral online. Also, [the department of] public health called me every day. There’s a formula to the questions, regarding your temperature, your breathing, etc. But they asked me the same questions over and over, and I had none of the typical symptoms, so I asked why we couldn’t talk about the symptoms I had. Because the callers are not allowed to deviate from their form, the damn checkboxes. I found that frustrating. And then I was mad at myself for being so frustrated, because the callers are just trying to do their job.
Were you offered or asked if you needed psychological support?
When you developed new symptoms, was there further investigation?
No, they would just record it. Nobody gets an individual check sheet. I know I’m complaining here, but in many ways, the calls were also great. I was thankful to speak to another human every day. And sometimes I could tell it was the same person calling, and it became kind of funny. We would laugh when we recognized each other. Again, everyone is doing their best.
Fast-forward to two weeks after your test.
First, I was told a number of times that I had to be tested two more times, and test negative both times, within 24 hours. That’s what I was told at the start of my quarantine. But after the two weeks, they called me (and I still felt horrible), asked nothing about my nontypical symptoms, and then congratulated me for being out of quarantine! Ha!
I said, “I still don’t feel good, when do I get retested?”
“We don’t do that anymore,” I was told.
That really frustrated me, because I didn’t feel clear or safe to go out into the world. I argued but the phone-line managers could only do so much. I made a bunch of calls all around, to every medical or public health office I could find, and still didn’t get any answers. Later that evening, a doctor called. That’s when things got really interesting. The doctor told me that retesting can’t be done anymore because we don’t have a test that tells us whether the virus is alive or dead in you. I had never heard of that. Then she said something about the virus shedding for six weeks, and false positives.
Because I had been doing research, I had more questions, but the doctor couldn’t tell me anything without government clearance. I found that unacceptable, that I was not provided with information about retesting. The doctor was skirting the issue by citing public policy.
Then the doctor started crying! I told her that I couldn’t just go back out into the world without more information. All I wanted was information. She begged me not to mention her name or record the conversation. She was more upset than I was. Suddenly, I had to talk the doctor down from a meltdown! I really didn’t want to upset anyone, but I was scared too. The messages about tests and additional symptoms were contradicting each other.
So, that’s how I got myself retested. I had to make a doctor cry!
How much of that was exhaustion on the doctor’s part?
All of it, I bet.
Doctors are under so much stress, and I understand how you might just say things hoping the patient will be appeased for the day, so that you can move on, keep working. But I think that means little lies are told. And weirdly, I get that. Lots of people want as little info as possible to keep from freaking out. But I’m the opposite. I need to know as much as I can. I felt sorry for her. But the problem is, if you ask a lot of questions, you get perceived as a troublemaker.
Of course, we have to remember too that this is all new for the doctors as well, and they are dealing with a flood of information that might also be contradictory. Who knows what they are reading online?
How was the second test?
They wanted to come to my house the next day to take the test, but I wanted them to wait at least five days, because the two-week timeline is too rigid and didn’t match my experience. Why test me with symptoms?
Were you informed as to what a house call would look like?
No, I wasn’t. But I imagined they would show up in hazmat suits. That would really make me popular in my neighborhood. I don’t think there is much thought around the social consequences of house calls, but then again, it’s a national emergency. Hard call. Eventually, I got a call and went back to the tent behind the church for a second test. That test came back negative, and I was starting to feel better. But the relapses come along every three days to a week, and now I have other weird symptoms: pain in my kidneys, ringing in my ears and “COVID brain,” bouts of confusion.
What is your take on the value of testing?
I can only speak for me, and in my case, it was really important for me to make that second test happen. They were so adamant about testing when I was getting sick, but then seemed to think it unimportant after the two weeks. And my recurring symptoms? No conversations about that.
I know everyone is running around not entirely sure what to do, but it felt like once my two weeks were over, I was off the list of people to check up on. The phoning back and forth was a lot of work. I had to be my own nurse, in a way.
What advice do you have for someone who has or might have COVID-19?
Do whatever you have to do to get tested. Lie if you have to, because the checkboxes don’t get updated across the board. Take lots of notes, date them and do your own research.
But what about “Dr. Google” syndrome?
Oh God, yes! I went down plenty of rabbit holes. But there are reliable platforms you can trust. You have to be vigilant with fact-checking, because the internet is nuts.
To this day, do you have a clear idea of what the tests show, or don’t, or where or how the information from your tests is being used?
No, not at all. I wanted to volunteer my plasma for research, and after a lot of calls, one medical researcher called me to set up something, but then disappeared.
I don’t want to say “you’re on your own” with this, because at some point you have to trust the medical people and the overall goodwill of the system. But the system can’t seem to keep up with new information, and I really had to push.
For most of us who get the virus, our care will be done on the phone or at a site, so there’s not the same connection you get with a person, a doctor in a room. The remote care is necessary, but it leaves you feeling isolated. You have to become your own caregiver and scientist.
A combination of trusting the doctors and doing your own research works, but the doctors hate when you do your own research. I got scolded a couple of times for that.
Do you feel your needs were met?
I guess I feel that what could be done was done, but more intensive monitoring of people with ongoing symptoms needs to happen, as well as psychological support. I was terrified for the first few days, but I had no advice on how not to panic. Maybe there was just not enough time? COVID-19 hit so fast.
When it’s possible, I am getting a full check-up, head to toe. I want to know what has happened to my body after this virus ran through it. I still have no sense of taste or smell.
People are recovering, so now’s the time to get on the ball and improve testing and after-testing care.
This interview has been condensed and lightly edited.