I'm a 22-Year-Old Woman Battling a Rare Genetic Condition Who Got the New Coronavirus
This story has been medically reviewed by Raj Dasgupta, M.D., a pulmonary and critical care physician and the assistant program director of Internal Medicine at the University of Southern California.
A new strain of the coronavirus disease, known as COVID-19 caused by the virus SARS-CoV-2, was discovered in China in December 2019. By January 20, health officials announced the first case of novel coronavirus in the U.S., in Washington state, according to CNN. Soon after, officials began screening travelers from China at Seattle-Tacoma International Airport. The first coronavirus death in the U.S. occurred on February 29 in Seattle County. By the end of the first week of March, NBC affiliates report that there were more than 80 confirmed cases throughout Washington state, with many clustered in the Seattle area. A flu study was established in the city to attempt to document the spread of COVID-19, but it wasn't until March 11 that the World Health Organization officially declared a global pandemic, and numerous Seattle Times stories reported that local hospitals were largely unsure of how to handle affected patients at that time. As of March 20, the Centers for Disease Control and Prevention reports that the latest counts bring Washington's total confirmed cases to just under 1,400, with nearly 75 deaths reported across the state.
It all started with a small fever. I was going about my regular routine on Saturday, February 29th, when I noticed I was feeling more tired and run-down than usual — and eventually, quite warm. My fever grew into Sunday, but at that point, I didn't even consider that I might have been exposed to the virus that causes COVID-19, since I've never traveled abroad. I've been living in Seattle for just over a year, in an apartment with my 32-year-old husband, in an area that frequently gets lots of visitors from abroad. While I knew there were plenty of international travelers coming into the city on a regular basis, I really just assumed I was just developing a small cold.
Colds aren't out of the ordinary for me: At 18, I was diagnosed with a condition called vascular Ehlers Danlos that affects collagen production in my body, which means I'm frequently dealing with colds or fatigue, as I have a generally weakened immune system. My cardiovascular system, including my heart, is at risk of easily tearing, due the genetic mutation that has affected my organ structure. In the past, doctors have told me that a severe cough could potentially rip my aorta, for example.
When my fever surpassed 100°F and I began to develop a cough, that's when I decided I should reach out to a physician. At the time, I didn't know it would turn out to be more than a week until a doctor saw me in person — and when I finally did see one, I quickly learned there were no hospital protocols in place to help me.
When I first began asking nearby care providers if they would see me, nurses and other staff shared that they would prefer I stay home due to my symptoms. I was told that because I didn't travel abroad, because I'm 22 years old — much younger than high-risk older age groups — and because I wasn't in immediate distress, it was unlikely that I would be able to get tested for COVID-19. At one point, I heard that officials in my area had only allocated 200 tests per day, and many sick people like myself wouldn't automatically get a test, despite having symptoms.
But within 48 hours, my coughing got worse, and I slowly realized that I was having trouble breathing. I couldn't sit back and simply wait this thing out. Eventually I was directed to a telehealth session with a local care provider, but at that point it was very hard to breathe — I felt like a 400-pound man running a long marathon.
It took 15 minutes for 911 to dispatch my ambulance.
It was halfway through the first week of March when I first described my symptoms to the doctor via video chat. My fever had reached 101°F, but they suggested I might have bronchitis. The doctor asked me to pick up a steroid inhaler and a regular inhaler. The steroids gave me some immediate relief, but I couldn't keep them coming fast enough: I was using the inhaler so frequently that it didn't feel right to me. I couldn't draw a normal breath.
Two days after my first video consultation, I got so scared I couldn't breathe that my husband debated calling 911 right then. But I fought through it and eventually fell asleep. When I woke up, though, my lungs hadn't opened up at all: I still could not get full, deep breaths after 16 hours. I was struggling so much, I finally decided to call 911. They immediately asked if I had already had a telehealth consultation before calling them, so I recounted the electronic check-up I had three days prior and explained my symptoms again. It took 15 minutes of questions before the operator finally told me an ambulance was on the way.
Because I live in an apartment building, my husband had to hoist me up and walk me outside to the paramedics. When we arrived at a local hospital, I wasn't rushed inside — I was kept quarantined inside the ambulance for 20 minutes while they prepared an isolation room for me, and it only got more complicated from there.
They escorted me out of the hospital, spraying bleach behind me as I walked.
I spent seven hours in the emergency room that day. An EMT escorted me into a back room, one of three people who actually came into contact with me. I was cordoned off from everything. Basically, it felt like I was locked in there for the next seven hours; I didn't have access to a bathroom, blankets, pillows, or water. A nurse initially came in to ask me about my symptoms, and to take my blood. Since my quarantine room had a small window, I saw a few nurses were struggling with their protective gear, and many were visibly shaken when they approached my space.
After some time, the doctor came to tell me they were going to run tests — I was tested for the flu, clinical stress, plus a few other routine tests you might expect with an emergency room visit. But I was told they wouldn't test me for the coronavirus because I didn't meet current testing criteria at the time. Eventually, I was told I was free to leave after all the other tests came back negative — though, I wasn't given any advice for quarantining or OTC medications I could use to relieve my symptoms.
How to Recover at Home: You should immediately consult your primary care provider if you feel sick, but the CDC has published guidelines for treating sickness in your home. For additional guidance, please review this list of tips and suggestions.
As I was escorted out through a back door, I couldn't help but feel that these health professionals were hugely unprepared for patients such as myself. I watched them start to spray bleach onto every surface I had just walked over on my way out. It didn't make the situation any better that my husband started to exhibit similar symptoms on this day, too.
I finally got tested in a drive-thru.
After three days of fighting my cough with NyQuil and inhalers, my temperature hit 105°F. I wasn't getting any better. On Monday, March 8, I was connected to another doctor in a new city after a hospital nurse followed up my emergency room visit. Eventually, I connected with the doctor virtually, and within a few minutes of looking at my chart, she said I should be tested immediately — a completely different reaction from the physicians and nurses I had interacted with during the previous week.
My husband and I put on our masks and drove to a nearby clinic, where we waited in a handicap spot for my new doctor's team. After fifteen minutes, our car was surrounded by a few nurses and the doctor herself: She swabbed me first before asking my husband for a sample, telling us that she would test us for the flu as well. And that was that — I had been searching for this test for just about a week before I finally got it, as easy as going out for a quick drive.
Later that day, my doctor called to tell me that we tested negative for the flu, but that she strongly believed I was suffering from COVID-19. Within 24 hours, we got a call from local Centers for Disease Control and Prevention officials, who confirmed that both me and my husband had tested positive for COVID-19.
We both returned to isolation, with the advice that we shouldn't be stepping outside until we're symptom free for at least 72 hours. Now, we're focused on what we can control — getting good sleep, eating healthy meals, and taking as much Tylenol as we could handle.
Editor's Note: Talk to your doctor about which over-the-counter medications are most appropriate for your case before medicating. A recent article published in The Lancet raises questions about the role that ibuprofen plays on the severity of the disease.
It's been a week, and I don't know when I'll be better.
My husband is already feeling better, but I'm still fighting fever and coughing. Since everything is so new, our doctor said she couldn't give us an exact timeline of when we'd feel better — especially for me, as my immune system is so poor. Because the severity of my symptoms has slightly decreased each day, there actually isn't anything else I can do to beat COVID-19 entirely, beyond waiting it out. It's just a waiting game for when the fever finally disappears and my energy comes back. As of right now, I'm still holding strong at a fever of 101°F, nearly three weeks after I first started feeling ill.
I can see why people are comparing this to flu, but this is much different than any flu I've ever had. The fever is more severe than anything I've gone through before; the worst aspect of this new coronavirus is the massive amount of fatigue I feel, and my struggles with breathing. Of course, I'm not the only case out there — everybody reacts differently. But my breathing has been the biggest challenge. It feels like someone is sitting on my chest, even now. And as I've spent time recovering, I've been hearing more about the damage that COVID-19 can potentially do to your lungs, so I'm coordinating a visit to a specialist once I'm cleared to leave the house to see what lasting damage this has done to my chest. I'm concerned about my other organs as well, due to my genetic condition, but for now, I have to wait to learn anything further.
The only way I've gotten through this is to not panic.
Personally, I'm diagnosed with clinical anxiety and bipolar disorder, but weirdly, I have both of these conditions under control at the moment. I know how to cope with my own anxiety after my experience with Dialectical Behavior Therapy, which taught me how to cope with emotions that make me uncomfortable.
I also hope that people understand that panic buying supplies isn't going to magically save you. Nor is racism: I've heard a lot of people refer to COVID-19 as the "Wuhan Disease," but it's affecting everyone around the world just as equally, there's no need to add racism on top of an already disruptive disease.
Before I was officially diagnosed, many of my friends thought coronavirus was fake — and some people might still believe that. But I took time to find answers, options, and a real solution. I want everyone to know now that the threat to our health is real, it's serious, and you should take every precaution you can to protect yourself and others. Eventually, I discovered that I had been in contact with many families in February that ended up developing COVID-19. While I'm unsure if I contracted it through them for sure, I am taking self-quarantining very seriously, knowing that I don't want to spread it to others, either.
I made the telehealth doctor who eventually got me tested for the coronavirus my new primary care doctor almost immediately after our first consultation. The way she handled my case with care was impressive, but what really made me trust her entirely was her empathy. The panic around this new disease isn't surprising, but I felt that she gave me empathy in the moment I needed it most. And that's something that I'll always carry with me even after this pandemic is over.
*Source's name withheld at her own request.
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