This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The complete bibliographic information, a link to the original publication on https://formative.jmir.org, as well as this copyright and license information must be included.
There are still many unanswered questions about the novel coronavirus; however, a largely underutilized source of knowledge is the millions of people who have recovered after contracting the virus. This includes a majority of undocumented cases of COVID-19, which were classified as mild or moderate and received little to no clinical care during the course of illness.
This study aims to document and glean insights from the experiences of individuals with a first-hand experience in dealing with COVID-19, especially the so-called mild-to-moderate cases that self-resolved while in isolation.
This web-based survey study called C19 Insider Scoop recruited adult participants aged 18 years or older who reside in the United States and had tested positive for COVID-19 or antibodies. Participants were recruited through various methods, including online support groups for COVID-19 survivors, advertisement in local news outlets, as well as through professional and other networks. The main outcomes measured in this study included knowledge of contraction or transmission of the virus, symptoms, and personal experiences on the road to recovery.
A total of 72 participants (female, n=53; male, n=19; age range: 18-73 years; mean age: 41 [SD 14] years) from 22 US states were enrolled in this study. The top known source of how people contracted SARS-CoV-2, the virus known to cause COVID-19, was through a family or household member (26/72, 35%). This was followed by essential workers contracting the virus through the workplace (13/72, 18%). Participants reported up to 27 less-documented symptoms that they experienced during their illness, such as brain or memory fog, palpitations, ear pain or discomfort, and neurological problems. In addition, 47 of 72 (65%) participants reported that their symptoms lasted longer than the commonly cited 2-week period even for mild cases of COVID-19. The mean recovery time of the study participants was 4.5 weeks, and exactly one-half of participants (50%) still experienced lingering symptoms of COVID-19 after an average of 65 days following illness onset. Additionally, 37 (51%) participants reported that they experienced stigma associated with contracting COVID-19.
This study presents preliminary findings suggesting that emphasis on family or household spread of COVID-19 may be lacking and that there is a general underestimation of the recovery time even for mild cases of illness with the virus. Although a larger study is needed to validate these results, it is important to note that as more people experience COVID-19, insights from COVID-19 survivors can enable a more informed public, pave the way for others who may be affected by the virus, and guide further research.
The COVID-19 pandemic has significantly impacted the majority of countries in the world, with a total of more than 41.1 million confirmed cases and over 1.1 million deaths reported worldwide as of October 22, 2020 [
Unlike hospitalized patients, the population of people with mild-to-moderate symptoms of COVID-19 remains largely understudied and are among the “undocumented masses”; yet this population contributes significantly to the rapid transmission of the virus [
This research study was approved by Committee for Protection of Human Subjects (CPHS) at Dartmouth College, New Hampshire, United States, and is reported in accordance with the CHERRIES (Checklist for Reporting Results of Internet E-Surveys) statement for web-based surveys [
The full survey was developed using the well-established Qualtrics survey software under Dartmouth College’s license to ensure secure data storage behind institutional firewalls. The survey questions in this study were informed by various sources, including the CDC’s coronavirus case report form [
A complete demographic summary of the participants is presented in
The following subsections describe other categories of the full survey, the results of which will be presented, including (1) onset, testing, and contraction of COVID-19; (2) a deeper look at COVID-19 symptoms; (3) the road to recovery from COVID-19; and (4) insights from COVID-19 survivors.
Demographic summary of participants (ie, COVID-19 survivors) in the C19 Insider Scoop Study (N=72).
Characteristics | Value | |
Age (years), mean (SD) | 41 (14) | |
Age range (years) | 18-73 | |
|
|
|
|
Female | 53 (74) |
|
Male | 19 (26) |
|
|
|
|
White | 43 (60) |
|
Black or African American | 14 (19) |
|
Asian | 6 (8) |
|
American Indian or Alaska Native | 2 (3) |
|
Other or Mixed race | 7 (10) |
|
|
|
|
New York | 25 (35) |
|
California | 5 (7) |
|
Georgia | 5 (7) |
|
Massachusetts | 4 (6) |
|
Virginia | 4 (6) |
|
Texas | 3 (4) |
|
New Hampshire | 3 (4) |
|
8 other states a | 2 (3) |
|
7 other statesb | 1 (1) |
|
|
|
|
No, with pre-existing condition | 48 (68) |
|
Yes, with pre-existing condition | 23 (32) |
|
Not reported | 1 (1) |
|
|
|
|
Positive laboratory or antibody test | 68 (94) |
|
Presumptively positive | 4 (6) |
|
|
|
|
4-year degree | 25 (35) |
|
Professional degree | 18 (25) |
|
Some college | 14 (19) |
|
High school or GEDc | 6 (8) |
|
Doctorate | 5 (7) |
|
2-year degree | 4 (6) |
|
|
|
|
<20,000 | 13 (18) |
|
40,000-79,999 | 9 (12) |
|
80,000-139,999 | 25 (35) |
|
140,000-199,999 | 15 (21) |
|
≥200,000 | 9 (12) |
|
Not reported | 1 (1) |
|
|
|
|
Nonessential worker | 20 (28) |
|
Essential worker (health care) | 14 (19) |
|
Essential worker (non–health care) | 14 (19) |
|
Unemployed | 12 (17) |
|
Student | 7 (10) |
|
Retired | 5 (7) |
aAlabama, Ohio, Illinois, Maryland, Louisiana, North Carolina, Washington, Vermont
bIndiana, Missouri, Arkansas, Wisconsin, New Jersey, Connecticut, Pennsylvania
cGED: Tests of General Educational Development.
Within the full survey, there were a total of 8 questions that addressed topics related to the onset, testing, and contraction of COVID-19, including the following:
Did you test positive for COVID-19?
When did you start to feel ill or experience symptoms?
When did you take the COVID-19 test?
Were you working from home before you showed symptoms and/or tested positive for COVID-19?
Were you using any precautionary measures before you contracted COVID-19? If so, please share what measures you had in place (eg, strict adherence to social distancing, frequent use of masks in public spaces).
Do you know how you contracted COVID-19? If yes, please share as much detail as possible regarding how you contracted COVID-19.
Do you know of any others who may have contracted COVID-19 from you?
Responses to the above questions were summarized and are reported in a single subsection in the Results section.
Within the full survey, there were a total of 2 questions that addressed topics related to COVID-19 symptoms, including the following:
Did you visit a hospital or clinical care for treatment during the course of your illness?
[If you were hospitalized], how many days were you hospitalized for?
What symptoms did you experience [while ill with COVID-19]? Check all that apply.
[If “other” symptoms is selected from the above checklist] What other symptoms did you experience?
Responses to the above questions were summarized and are reported in a single subsection in the Results section.
Within the full survey, there were a total of 4 questions that addressed topics related to the road to recovery from COVID-19, including the following:
Are you fully recovered from COVID-19?
[If you still have lingering symptoms], please list the lingering symptoms that you currently have.
When do you believe you fully recovered from COVID-19 and associated symptoms?
How many weeks did it take you to recover from majority of the symptoms associated with COVID-19?
Have you experienced any stigma associated with having COVID-19?
[If yes], please share more about your experience with stigmas associated with having COVID-19.
Responses to the above questions were summarized and are reported in a single subsection in the Results section.
Within the full survey, there was 1 open-ended question that addressed topics related to insights from COVID-19 survivors, namely:
Are there any comments or insights that you want to share with regards to your experience with COVID-19?
Responses to the above question were summarized and are reported in a single subsection in the Results section.
Overview of COVID-19 onset, testing, and contraction for participants in this study. (A) Month of symptom onset; (B) knowledge about the source of infection; (C) prevalent sources of virus transmission; and (D) time lag from symptom onset to testing for COVID-19.
During the early months of the outbreak in the United States, limitations in testing was identified as one of the multiple factors that contributed to the rapid spread of the disease [
There is no dearth on the reported characteristics of COVID-19 for severe cases among hospitalized patients [
Overview of the type of care received and COVID-19 symptoms reported by participants in this study. (A) The type of care received by COVID-19 survivors; (B) list and prevalence of more common COVID-19 symptoms; and (C) other less-documented symptoms of COVID-19.
There are many unknowns about the road to recovery for persons who contract COVID-19. According to a February 2020 remark from the World Health Organization (WHO) Director-General, the recovery time is 2 weeks for persons with mild disease and 3-6 weeks for persons with severe or critical disease [
Overview of the road to recovery from COVID-19 for participants in this study. (A) Percentage of COVID-19 survivors who experienced lingering symptoms and a recovery time longer than the commonly cited 2-week period; (B) duration of the majority of symptoms reported (mean duration: 4.5 weeks); and (C) list and prevalence of lingering symptoms associated with COVID-19.
In addition to the longer recovery times identified in this study, we found that 36 of 72 (50%) participants still experienced lingering symptoms of COVID-19 even after an average of 65 days following their illness onset. A list of such lingering symptoms and changes to general health identified by participants of this study is illustrated in
Experience with stigma reported by participants (ie, COVID-19 survivors) in the C19 Insider Scoop Study (N=72).
Observation | Value, n (%) | |
|
||
|
Yes | 37 (51) |
|
No | 35 (49) |
|
||
|
Avoidance by others (eg, friends or neighbors) after recovery | 12 (17) |
|
People undermining the illness or experience with COVID-19 | 5 (7) |
|
Hostility and dismissal from clinical or medical staff | 4 (6) |
|
Blame for contracting and spreading the virus | 4 (6) |
|
Shame and name-calling | 3 (4) |
|
Discrimination at places of work and living | 3 (4) |
|
Blame for the stay-at-home orders and the economic impact | 1 (1) |
|
Reprimand from household members at risk of exposure | 1 (1) |
|
Organizations expressing unjust entitlement to medical information | 1 (1) |
COVID-19 survivors are an invaluable resource not being fully utilized as a source of knowledge. Through the surveys conducted in this study, these survivors shared insights that they believe will help the society at large better cope with the realities of the ongoing pandemic. Many of these insights are targeted toward the larger population who may not yet have been infected by the coronavirus; however, given the recent rise in COVID-19 cases in the United States and other countries [
Salient insights obtained from these COVID-19 survivors are listed below (with a few direct quotes from participants):
“Any symptom can be the virus so self-isolate even if you have a tickle in your throat…It is easy to mistake a mild case of COVID-19 for a cold or allergies” in the early stages.
Understand the “fact that doctors and nurses do not have all the answers” so set your expectations accordingly.
The journey with COVID-19 can be scary and lonely, as well as physically, mentally, and emotionally tasking. “You have to advocate for yourself every step of the way.”
Young and healthy people without any underlying medical conditions can also have a rough journey with COVID-19. Take it seriously. Protect yourselves and others.
“The disease presents differently in all patients. It is not a
one size fits all
.” For some it is short-lived, whereas others experience long-term health issues due to COVID-19.
If you contract the virus, take it day by day. Be patient with the recovery process as it can be long and volatile. Symptoms and lingering symptoms can come in waves.
Do not wait too long to go to the hospital (if needed), as a delay has led to worse outcomes for some. Additionally, some patients have gone to the hospital and been dismissed or discharged prematurely. Trust your instinct as the sole person with first-hand knowledge of your own illness.
Do not allow distrust of the health care system to be your excuse for having a worse outcome. Ask questions during clinical care to ensure that you are being prescribed the best treatment for your specific situation.
Some medications used in severe cases can cause hallucination and uncanny dreams.
Stigma during or after COVID-19 is a reality. Others may have various reactions to people who contracted the virus, especially during the initial phase of returning back to society. Some people may be cruel and unkind with their actions or words.
COVID-19 tests and antibody tests can be inaccurate. There are persons who test positive for COVID-19 and negative for antibodies, and vice versa.
It is not sufficient for organizations to rely on body temperature as a primary means for determining COVID-19 symptoms. Some survivors never experienced fever, whereas others only experienced fever for a short time (eg, 24 hours).
This paper presents a descriptive study that summarizes the experiences of first-hand COVID-19 survivors with a particular focus on how they contracted the virus, the range of symptoms observed, the duration of illness, and their experiences on the road to recovery. Our findings show that the top known source of how people contracted COVID-19 was through a family or household member. Participants also reported a range of symptoms that they experienced during their illness, including up to 27 less-documented symptoms such as brain or memory fog, palpitations, ear pain or discomfort, and neurological problems. Another key finding is that the majority of participants (47/72, 65%) experienced a recovery time longer than the commonly cited 2-week period. The mean recovery time in this study was 4.5 weeks, which was more specifically 4.2 weeks for nonhospitalized patients (ie, mild-to-moderate cases) and 6.2 weeks or more for severe cases (ie, patients who were hospitalized for COVID-19 management). In addition, 51% (37/72) of the participants reported that they experienced stigma associated with having COVID-19. Examples of stigmas shared by our study participants include avoidance by others after recovery and people undermining their illness or experience with COVID-19. Finally, participants shared insights from their personal journey with COVID-19 in the hope to inform and encourage the general public, especially others who may not yet have been infected by the coronavirus.
Majority of the early literature that presented the characteristics of COVID-19 primarily focused on persons with severe cases of the disease or hospitalized patients [
Other studies have now begun to uncover characteristics of mild-to-moderate cases of COVID-19. For example, Liu et al [
Even fewer studies in the literature have focused on understanding the time to recovery after COVID-19 infection. One of the earliest sources of information on recovery time was a February 2020 remark from the WHO Director-General, which stated an average recovery time of 2 weeks for persons with mild disease and 3-6 weeks for those with severe or critical disease [
There are several limitations to this study. First, the sample size of the study is small compared to the total number of people in the United States that have contracted COVID-19. However, this study benefits from diverse recruiting strategies and thus has representation from 22 of the 50 states in the country. Second, this study relies on participants’ ability to recall and share their experience with COVID-19. Self-report–based studies have well-known limitations such as recall bias. However, we believe this bias is minimized because the majority of the study participants experienced symptom onset in March 2020 and were recruited between the months of May and June 2020, suggesting that these participants were recruited about 2 months after they contracted the virus. In addition, the average duration of illness was 4.5 weeks across all participants, and participation in this study required recovery from COVID-19–related illness. Hence, we expect that the majority of the participants enrolled into the study within their first month after recovery, thus maximizing their chance to accurately remember their experience.
This study presents preliminary findings from a small cohort of COVID-19 survivors. It is well known that many people do recover from COVID-19; however, the results from this study show that the journey for some may be long and uncomfortable. To support an accurate depiction of the journey with COVID-19, it is important to recognize that the recovery time can be more than 2 weeks for patients with mild symptoms. In addition, a notable proportion of COVID-19 survivors are considered “long haulers” [
Survey questions administered to study participants.
Centers for Disease Control and Prevention
Checklist for Reporting Results of Internet E-Surveys
Committee for Protection of Human Subjects
National Institutes of Health
World Health Organization
The author acknowledges the many participants and advocates of the
None declared.