Survey to self-report your mild COVID-19 experience
In early March 2020, while driving home from a conference in the middle of the afternoon, I struggled to stay awake. About 6 days later, I realized I had a fever. That day I saw my doctor, tested negative for the flu, and was sent home with treatment recommendations. A week later, after developing shortness of breath, my doctor got approval to test me for COVID19. Ten days after that, the results landed in my online health account. The coronavirus was “not detected.” Based on my doctor’s clinical assessment and my symptom pattern and correlation with the viral timeline, we consider the result to be a false negative. Now fully recovered, I am not pursuing further testing.
My fever peaked the day after COVID-19 was declared a global pandemic. Information about what to expect from a mild case of the virus was almost impossible to find. While moving through the viral symptoms, and also managing the emotional rollercoaster of fear that accompanied every emerging symptom, I became acutely aware of the gigantic problem of invisibility for mild cases.
Because there are not enough tests for the general population, the data you see today is inaccurate. A huge swath of the population has mild, undocumented, undiagnosable experiences, and is missing from the numbers. Without being tested, people who are sick at home literally do not count.
Understandably, government officials, medical professionals, and public health institutions have their attention on bigger problems than accurately counting milder cases.
Like me, most people dealing with COVID-19 are enduring the illness at home, ineligible to be tested unless life-saving hospitalization is required. If you are not sick enough to need respiratory support, your experience is invisible.
Of those who do manage to be tested, a large percentage are astonished by their non-positive results, often after waiting through significant laboratory delays.
Until the antibody test is released and reliable, countless thousands of us will remain undiagnosed, invisible, off the record.
I am not a scientist, I’m an artist. I create art, projects, products, and experiences that help people feel alive, validated and connected. As I navigated through symptoms consistent with COVID-19, I felt the helplessness of not being seen. Sensing the urgent need for people to be able to report their experiences, I created the global, survey-based project, Visible Community Data.
At the heart of the Visible Community Data project is the intention to provide validation for those enduring mild COVID-19 in the midst of the pandemic.
If, or should I say, when, you find yourself in the midst of this harrowing experience, in one way or another, you will face your mortality.
You‘ll be disheartened by your limited access to medical care. Whatever level you may normally expect, it will be less than that.
You’ll find that without a confirmed diagnosis, the people around you might rather deny your experience, and tell you it must be something else. They’ll offer you Facebook links and supplement advice and it will be irrelevant to what you’re dealing with. If you are “fortunate enough” to make your way through the testing maze and then get a false negative, people who care about you will cheer. It will make them feel safer that you didn’t have it. But you will know, you’ve been failed by yet another break in the system.
And every day you watch the global numbers growing, you will find yourself in the depths of your humanity. It will occur as if you being sick, seeing from the inside what that is really like, doesn’t even count.
While self-reporting in an anonymous survey is not the ideal method for accurate data collection, it is unacceptable for people who are sick to remain hidden.
As the self-reported data comes in, we begin to gain awareness of the varied experiences of milder COVID-19 infections. We see symptoms that haven’t been discussed yet, like lower than normal temperature. We begin to see the varied range of symptoms and gain a view into how long it is taking people to recover.
The survey aims to help people locate themselves in the experiences of others. From this, we can potentially offer a bit of hope and reassurance to those about to go down the rabbit hole of undiagnosed COVID19 symptoms at home.
With global headlines obliterating local news, it is up to us to stand up and be counted.
If we are the ones who can see what’s missing, we can also be the ones who step up to fill the gaps.
Please help others who are suffering symptoms consistent with COVID19 to be validated and seen by sharing this article widely. Please help us let people know, there is now a place to self-report.
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About
Visible Community Data is a grassroots, crowdsourced effort created by an artist with consultative support from individual contributors. If you’d like to contribute to the project, share with the media or offer constructive feedback, please reach out to visiblecommunitydata@gmail.com.
It’s important to note, the Visible Community Data project isn’t designed by epidemiologists, public health experts or physicians. If you are one and would like to help us expand, please get in touch.
If you are or have been symptomatic, you can take the anonymous survey here.
