You won’t find us in the daily Covid statistics. We test negative–more than once–or we’re too sick to be tested at all. Our symptoms are usually atypical. We’re often dismissed by the medical community who are overwhelmed with real Covid cases. I’ve read about us. We don’t have the flu or bronchitis or pneumonia or a bad cold. We have Covid, but we are invisible.
I got sick the week before Thanksgiving. I believed from the start I had Covid, but prayed I didn’t. I don’t have a dry cough or trouble breathing. My fever was low. I didn’t lose my sense of taste or smell. My cough was violent, choking, very productive and made me retch and even vomit. I had a headache, body aches, chills. My temp was 99.4. Each night I was wracked with nightmares and woke soaked after my fever broke. I called my doctor. He said get tested.
My first test, two days later (the earliest I could get; by now it was the week of Thanksgiving and testing sites were slammed), was at CVS. We drove up to the window and a girl handed me a paper bag. With shaking fingers, I tried to open the swab packet. I couldn’t hear her instructions on how to self-swab. I stuffed my test tube in the already-full collection bin and left with little faith in that sample. I would learn the results in a few days.
I had made an appointment for my husband to be tested at a real clinic. On that same day, I drove myself to a different clinic with no appointment. I wasn’t allowed in the building. I had to call a number–busy, busy, ring, ring, no one answers. After some time someone answered. I was to pull behind the building and wait. I waited, my head on the steering wheel, for three hours.
Finally a nurse came out to swab me. She took my pulse/ox and temp, then told me not to leave yet. After a while, a second nurse came to my truck window. She listened to my heart and lungs (both fine), thumped on my forehead and sinus passages. “Does that hurt?” she asked. “Only because you’re thumping.” She told me to take Tylenol and Mucinex and that I’d get a call if my results were positive. “What if it’s negative?” I asked. But she was gone. I had only enough energy to drive home.
My CVS test results came the night before Thanksgiving: negative. My temperature was already rising. 100. 101. Over 101. It was the Thanksgiving holiday (not at our house) and I have never been so sick. The Saturday after Thanksgiving, six days after my second Covid test, my husband went to the clinic and demanded my results. Negative. Two negatives two days apart, yet I was sick as a dog. We called our doctor. He didn’t see any point in getting a third test. He also hadn’t seen any flu cases. He prescribed a Z-pack to keep my cough from going into bronchitis. I was sick with a mysterious flu-like illness in the middle of a global pandemic. I’ve had the flu, bronchitis, pneumonia, sometimes in combination, many times, yet I’ve never felt like this.
I booked a third Covid test at yet another clinic. If that test was negative, then I would believe it. On test day, I typed a list of symptoms, and a record of my morning and evening temps, along with pulse/ox rates (my husband snagged one at a grocery store). I’d been keeping a detailed diary since I first got sick, and recorded my temps 4 times a day, along with weight loss. The nurse called me into the special room. Took my temp and pulse/ox, swabbed me. A P.A. came to the door and asked if I had symptoms. I’d shown the nurse my list. She took the list to the P.A., who was clearly not stepping inside, and said I had “many.” The P.A. didn’t look at my list. She just left.
From that moment on, I stopped taking my temperature and pulse/ox. I could breathe okay, except when I was choking during a coughing spell. I knew by my headache and chills when the fever came back. No one cared about my records. I didn’t either, anymore.
When that test came back negative, two days ago, I was relieved, my husband won’t be in danger. And then I collapsed in tears because I was still sick. My husband called our doctor again. I told him about the third Covid test, again negative. My doctor thinks the first two tests were false negative (these tests aren’t all that reliable) and that I may have had Covid. My third test, three weeks into my illness, would be negative. The critical window in which I was actively shedding viral cells had passed.
He ordered a chest x-ray and blood work to check for post-Covid inflammation. I’ll spare readers the ordeal of getting lab work with flu-like symptoms, bringing two of my three negative results, being snapped at (“Why are you here?” “Because my doctor ordered this test!”), sent back to the car, asked the same questions by different people on my phone over and over again, until I finally got the tests. I went to bed for the rest of the day.
I’ve become used to having my skin, especially my back, hurt so much I can barely wear the softest pajamas, lean against a chair, lie in bed, take a shower. To having aching fingers. To always be freezing. To being dizzy and queasy. My stomach growls, but I can only eat a few bites of Cheerios, Cheezits, Lorna Doone cookies, some real cheese. I drink Sprite and water. As of this writing, I’ve lost 6 pounds, a lot considering I don’t move. I can time my fever by the clock. I dread going to bed because of bad dreams and night sweats.
Isolating is hard, even with only one other person in the house. Constantly reminding my husband to wipe down surfaces, clean the kitchen, use the other bathrooms, and, hardest of all, don’t come near me.
I can stay up a little while at the computer, but not long. I can read, some. I take long afternoon naps with cats piled at my feet. Outside my bedroom window, I see neighbors walking dogs, runners, walkers. They seem so normal. Christmas decorations are up; my sagging fall decorations are still on the porch and inside the house. I have a feeling Christmas will be like Thanksgiving, nonexistent.
I can’t write–my brain is too muzzy. I can’t clean my dirty house. I have lost heart. This entire year has been a challenge for all of us. I’ve had career disappointments, serious family health issues, the horrible news we’ve all endured, and now this. Early in the pandemic, before anyone took it seriously, one doctor said, “We will all get it.” I believed him, and pray that my husband and sister are spared.
I did everything right. Before masks were mandated in my state, I ordered them for us. I went to the grocery store at 6:00 a.m., masked and gloved. When the lock-down was over, I stayed home anyway, except for errands, getting my hair done (rarely), and visiting my sister a few times. I’ve seen no one since March. When the stores stopped counting people, when they stopped sanitizing carts, when they stopped checking for masks, I brought my own sanitizing wipes, and tried to distance. I saw people with their masks under their chins or noses. I wanted to yell at them, but didn’t.
And I got sick anyway.
I know I’ll get better, eventually. I believe I’ve had Covid, maybe still do, but can’t prove it. I’m just one of the uncounted, the invisible.
When I don’t feel too awful, I think about climbing a very steep trail on Grave’s Mountain, in the Blue Ridge. I started up that trail in October, one of the four Fridays my husband and I left our neighborhood for relaxation, the first since March. He’s not able to hike, but I found myself going up and up, rock by rock. It wasn’t easy. When I got out my husband’s sight, I knew he’d worry about me disappearing into the woods alone, so I went back down.
Right now the stairs in our house feel like Everest, but they won’t always. When I’m better, when I’ve regained my strength, I’m going to hike that trail, climb up and up and up that mountain, alone. I won’t be worried. No one will see me.
12 thoughts on “Covid’s Ghosts”
This is tough. Feeling sick and unheard is the worst. Sending support and thanks for sharing.
Thanks, Frieda. I’m not alone–there are lots of us out there.
Oh, so very sorry to read this.
Will pray that your recovery will be just around the corner.
Thanks for writing your story for us. A really stark reminder that we are all vulnerable- I have also tried to do all the right things. But will try even harder now. Hugs to you.
Sheilah, Thanks for your kind words–recovery isn’t around the corner for me. But do be careful. Educate yourself about this disease. I tell that to my husband, to my sister who has cancer–read the journal articles, read stories from patients–but no one listens.
OMG I am so sorry! To add insult to injury you can’t even get a reasonable diagnosis to validate your suspicions. Three negative tests and yet — all those symptoms. What an ordeal to even get tested in the first place. I imagine there are many more invisible COVID patients like you. It must be scary to seek help and not find it. Relieved to hear Frank is okay so far; still, as you said, it must be really hard to isolate and keep everything sanitized. Sending prayers and healing vibes and strength. Hope you feel better soon!
Hi Jama, I can’t imagine feeling better. It’s like a mirage on the horizon, one I’ll reach sometime, but I don’t know when. Every day is the same.
Hoping you and yours stay safe . . .
Candice-so sorry to read you have been so ill! My sister in law has a similar story to yours…she was sick after a flight home from CA last March with a lot of COVID symptoms. She repeatedly tested negative, and is also negative for the antibody test, yet still gets fevers in the evenings all these months later and no one can figure it out. I hope you will slowly continue to improve, and again so sorry you are going through this.
Joan: I’m right there with your sister. I dread getting an antibodies test because I believe it will say “negative,” like everything else. Your sister is a long-hauler, and I am too.
Sorry to hear about your long struggle with Covid 19 illness and the night mare medical system. No one as ill as you should have been put through this. I hope you get feeling better soon.
Take care of yourself and family.
All the Best
Oh, Candice. I’m so very sorry. This happened to a friend from high school. Her experience was exactly like yours, down to the same number of negative COVID-19 tests. Gradually through time and much rest she’s doing better. But it’s so frustrating. Sending you light and love.
Hillary, Thanks for telling me about your friend. It helps to know there are more of us because, honestly, this is the loneliness disease in the world. Even if you live with your spouse. Even if your family asks after you.
Oh sweetie!!!! I am sending so much love your way. How awful – I’m so sorry!!! xxxooo e