Earlier this week, I received an email from a reader in Seattle who’d tested positive for COVID-19, the disease caused by the novel coronavirus. She lives with her husband and children; the rest of her family has not been able to get tested, but everyone who’s sick in their home is presumed to have the disease. Everyone has a fairly mild case except the couple’s infant, who required a brief but harrowing trip to the hospital. But this person has found herself surprised by the mix of shame and liberation that’s accompanied the diagnosis. She spoke with me at length, with the hope of destigmatizing a positive diagnosis: “We have no idea how we acquired COVID-19,” she said. “We were careful, and pointing fingers would do nothing.”
Answers have been edited for clarity and length.
1) Hi! I know you want to stay anonymous, but maybe you can tell us a little about where you live and your family situation, just to start — and how you experienced the growing spread of the virus in Seattle. How were you attempting to isolate, and what was hard about isolating in your situation?
Our family lives in the Seattle area and we’re a white hetero married couple with a number of young children. I am on staff at the University of Washington, which is an important factor in my being tested.
Seattle has been a strange place for the last month or so. As Seattle became a “hot spot,” everyone we knew was gradually becoming more concerned, especially in the last week of February. Scrolling back through my texts and photos, I see that I did a massive Costco run at the end of February and started ordering cleaning supplies that weekend. At the beginning of March, we started curtailing playdates and activities, having kids ramp up their handwashing, lack of face touching, and carrying hand sanitizer. We were more attentive to wiping down shopping carts with sanitizing wipes, not touching elevators buttons, etc.
I am on maternity leave, so I was not going to work, but my husband started working from home at the beginning of March. The kids’ schools closed in the middle of March. It wasn’t until mid-March that I was more conscious about wearing gloves to get gas, leaving packages outside for a few days before bringing them in, not getting the mail, and that sort of thing. All-in-all, I wouldn’t say that we were gold star isolators, but that we did a very good job. We were certainly more serious about it than many people we know.
I also should note that like a lot of people, I was reading COVID-19 news constantly. It was absolutely consuming my life. I was anxious and angry and worried nearly all of the time for the past few months. I have older family members that, up until recently, believed this all to be a hoax, and I was actively trying to educate them.
2) When did you first start feeling sick — and what led you to try to get tested? What was your family’s experience with getting tested?
Around Monday, March 16, my husband felt a little feverish, and it got increasingly worse. By Wednesday, March 18, one of the kids and I were also feverish. We sent the nonsymptomatic kids to a relative’s home. Our illness was primarily a fever and just feeling a little crappy and tired. Like many other people, we vacillated between “Could this be it???” and “Oh, we’re just being paranoid.”
My husband tried to call into the university’s telemedicine hotline app to get approved for a test. My main motivation for having him do this was so that our kids that were not in our house could come home. I also really wanted to end the uncertainty. The app experience was pretty terrible — he waited in the queue for four-plus hours and then the doctor had to go to bed; this happened multiple times. Eventually, he got through, described his symptoms and was told he wasn’t eligible for a test.
Around this time, I learned that university staff that have a primary care physician in the university medical system could be tested at a drive-through site. (This is in part due to the brave choices that university researchers made to defy the federal government with regard to COVID-19 testing.) I sent an electronic message to my PCP, and a very kind nurse called me back and gave me a questionnaire about my symptoms. I could tell from the nurse’s tone that I was borderline eligible to be tested, but she said she’d try to get it approved and she did. She called back and gave me a phone number for university testing. I got an appointment to be tested the next day.
“We vacillated between ‘Could this be it???’ and ‘Oh, we’re just being paranoid.’”
That night before I was supposed to be tested, however, the baby changed from being lethargic to having labored breathing. It was not awful, but certainly serious. So we called the pediatrician's night emergency number. It is important for everyone to know that ALL medical systems are overwhelmed right now. We did not hear back from them for nearly an hour, and they told us to go to the emergency room at the Children’s Hospital. Looking back, we should have just gone straight to the hospital.
The baby started breathing better in the car, thankfully, but we still went, with masks on. Upon arrival at the Children’s Hospital in the middle of the night, we were told that only one of us could go in and we had to have a mask. Everyone at Children’s had masks or full-face coverage. We were placed in an isolated room, and nurses and doctors spoke to me via a telephone if coming inside to examine the baby was not essential. I told everyone that I was being tested the next day. They said that because of that, there was no need to test the baby because if I had it, the baby did and vice versa. They diagnosed the baby with croup and gave them a steroid treatment typical for croup. We went home and continue to monitor the baby, who seems to be improving, but not as quickly as the adults have. There is a lot of online chatter and some media reports that COVID-19 does not impact children as severely as adults, and some say not at all. This has not been our family’s experience. The baby has seen the worst of this.
The next morning, I went to get tested. I drove to the drive-through clinic and spoke with the administrator and nurse on the phone. They instructed me on where to park, two medical professionals in PPE (personal protective equipment) came out, one approached my car, and I rolled down the window. She gave me some paperwork, including my code to get my results. She asked me to pull down my mask so that it only covered my face. She then swabbed my nose. And yes, it was uncomfortable. I would not do it for fun. I drove away and then, of course, logged in to the results system every few hours just in case.
4) What did it feel like when you received the results? What did you do?
A little over 24 hours later, I got a phone call from the clinic. I was walking with the baby to get some fresh air. I was immediately nervous because the worker had said that they would notify me electronically if the test was negative. I also saw that there were people within hearing distance. Regardless, I answered the phone. The person on the phone told me that the test was positive. They then started rattling off phone numbers and resources and giving me instructions, but I was too in shock to hear it — plus, I was outside without a pen and paper.
I had some questions about how long we would need to be in isolation, when we could see our other kids, and how we should be behaving differently. The person on the phone directed me to contact my primary care provider. I asked if this meant that my sick husband and breastfeeding baby were probably also positive, and they said most likely. I turned the stroller around and went home and told my husband that we were positive. He was also in shock.
“I turned the stroller around and went home and told my husband that we were positive.”
I immediately started googling things like “what to do to when you have COVID-19,” looking for official guidelines — and surprisingly there is very little information available, compared to the information available about preventing transmission. There is even less information about what to do when your entire household has it. This is especially the case regarding when you can be in contact with other people.
I spoke with the state public health hotline today, and they told me we should be symptom-free for 72 hours before going back to work or school. Then I spoke with my primary care provider and she said that a week after symptoms first appeared, we should be fine. The kids’ pediatrician’s office, as well as the Children’s Hospital, told me different things. I’ve decided that we will call all of these people again when we are symptom-free and see what the latest recommendations are. We absolutely do not want to infect anyone else, and we have taken our already strict protocols to a stricter level. Thankfully we were well stocked, so we should be okay with eating what we have.
5) Who have you told, and how did they react?
We told the relatives that have our other kids. They have been monitoring the kids' temperatures and symptoms for days. They were supportive. We are not telling the other kids. They know we are sick, but we don't want to scare them.
We also told our immediate families, but asked them to not tell anyone. Some of those that thought it was a hoax seemed to have been moved to change their minds. And now I have the moral upper hand. They’ll say, “Trump is doing everything he can so that everyone can be tested!” to which I reply, “If my husband and kids can't get tested and they live with me, how is that possible?”
Because we have been isolated for quite a while, we did not have others that we would have felt obligated to inform. We had already stopped having our house cleaners and babysitter come (although we continue to pay them). We did not expose as many people because of these choices. Some people have texted to check in more broadly, and I'm just lying to them.
6) How are you and your family feeling now?
Healthwise my husband and I are a little fatigued. He is about a week into this, and the baby and I are a little behind him. I'd say this is like a bad cold without any of the congestion. There is a weird buzz in my head that sort of feels like a hangover. Both my husband and I continue to work (my maternity leave just ended). The baby is lethargic and has some congestion and a little labored breathing.
Emotionally, while of course we are sad about having COVID-19, the worst part is not seeing our other kids and seeing that the baby continues to be dealing poorly with this. I cannot sleep because I'm listening to the baby breathe. I'm not normally that kind of parent.
“There is a silver lining: This is a bit liberating.”
However, there is a silver lining: This is a bit liberating. For the last few weeks, I've had incredible anxiety about COVID-19. Before the positive test, I screamed at my husband for forgetting to wear gloves to pump gas (he did do a sanitizing wipe and washed his hands). A few hours after I got my positive test, I realized that I could bring in the packages on the porch with no fear! That made me feel better than I've felt in a long time.
After we’re done isolating, I can go to the store or other places without the fear that I've experienced over the past few weeks. And assuming that things are going to be much worse soon, I think that will make things easier. I can also be more helpful to my neighbors and friends.
7) When you first told me what happened, you said that you also feel ashamed — like there’s a stigma around testing positive. Why do you think that is?
I know that I believe that it is stigmatized. I don't want people wondering what we did or didn't do to acquire it. I do not want to be scrutinized like that. Would someone see a photo of my kid at T-ball in late February and attack me for going to that game?
“I do not feel like I could safely disclose my positive status, given what I've heard.”
I know the truth is that I am just lucky to have been tested when most others in my situation would not. Many people are positive too, and just don’t know about it. I don’t want people in the neighborhood treating our family like lepers or Typhoid Mary, especially not the kids.
The way that people talk about COVID-19, especially on social media, and how afraid they are to get it and the measures they are taking — while I am glad that they are taking precautions and this is a very serious virus, it is incredibly hurtful to me. I do not feel like I could safely disclose my positive status, given what I've heard. I have no sources of support for this outside of those I've told. I wish there was an online group for people like me, but I also know how those can get unwieldy. For now I'm trying to stay off social media as much as I can.
8) How do you think we can destigmatize contracting COVID-19?
I suspect that as testing becomes more accessible, it might change. Celebrities and politicians coming out as positive might help normalize things a bit, but I know that there is also a sentiment that it is unfair that the rich and powerful have access to testing. Interestingly, though, one of our parents said that they were more comfortable with our status because of Tom Hanks coming out about his.
“Sure, careless people will get it, but so will careful people! We were careful, and we did.”
But looking ahead just a few weeks, so many more people are going to have COVID-19. I truly hope that we can collectively start to be more compassionate — no pointing fingers or playing the blame game. Sure, careless people will get it, but so will careful people! We were careful, and we did.
I also speculate that those who are immune to the virus after recovery could play a special role in helping those fighting it. We have already inquired about taking part in the Seattle COVID-19 vaccine research project as well as some efforts to study COVID-19-positive mothers' breast milk. I need to see if this happened in China or Italy. That may be the best anti-stigma mechanism.
9) What is your plan for the weeks and months ahead? Can you be certain that you’re immune?
That is the million-dollar question, but it is really two questions: First, when are we not contagious? The CDC says two negative tests in 24 hours is "proof" of not being contagious. I'm waiting to see when we are done having symptoms and then will ask my doctor, the kids' doctor, and the state Public Health Department to see what they say. I really want to see my other kids again. The current wisdom is that we will be immune. But I imagine we will still be taking greater precautions than we did in the past.
Overall, since my husband and I will likely be working from home for the near future, I would love if I could find a nanny or babysitter to help. It seems that childcare, schools, and summer camps will not open and continuing to try to work with kids at home is tough. We are incredibly lucky to have jobs that allow us to work from home and both have job security. And since we continue to be paid, we'd like to help employ someone. I wonder if us being COVID-19 immune will make us more attractive employers?
Before I tested positive, I was consumed with questions of when this all would end. I haven't thought about that in a while. I guess that the majority of my anxiety was tied up in worrying about getting COVID-19. It is oddly freeing to not have to plan ahead.
10) What would you say to anyone who’s tested positive and is feeling embarrassed or ashamed about it?
I understand. I am too, but thankfully my family wasn't severely impacted and I'm trying to focus on the reduction of anxiety about acquiring it. Try to find some people you trust to talk about it. Write a diary.
11) Anything you’d like to add?
We have no idea how we acquired COVID-19. Was it the time my husband grabbed a package straight off the porch? Did one of the kids have it and passed it to us? Was it at one of the kid activities where I might not have used hand sanitizer enough? Was it a time I sped through the second round of “Happy Birthday” while washing my hands? We will never know. We were careful, and pointing fingers would do nothing. ●