Symptom prevalence and an exposition of the lived experiences of participants are presented. Pseudonyms are used to de-identify cases where the spoken word is quoted.
General initial symptoms (Figure 1), symptom prevalence within the first five days of initial presentation (Figure 2) and symptom prevalence at 6 days to 22 days (Figure 3) are reported. A cursory look at the general initial symptoms (Figure 1) reveals that the main symptom that majority of the patients reported was shortness of breath (42.9%) followed by cough (35.7%) and headaches (35.7%). But as the condition unfolded with increasing number of days, shortness of breath (67%) and easy fatigability (67%) were most prevalent amongst the reported cases in the first 5 days of symptom onset (Figure 2). Fever (57%) and cough (57%) were evenly prevalent at this stage and by six days and beyond (Figure 3) chills and shivering (67%) became more prevalent than shortness of breath (44%) and easy fatigability (67%) remained persistent.
Lived Experiences of COVID-19
Five emergent themes followed the analysis of the self-reports, and included (i) the variability of the severity and presentation of the disease, (ii) the 3F (fright, fight or flight) response, (iii) moral obligation and personal agency, (iv) voicing vulnerabilities and harnessing hope, (v) silencing stigma. These are augmented by verbatim quotes.
Variability of the Severity and Presentation of the Disease
The disease appeared to manifest differently amongst the cases. The experiences occurred over a continuum, whilst some individuals remained asymptomatic; others experienced mild symptoms and others a more severe course of the disease.
“I never had symptoms, I was just dealing with something that I don’t know” (Constance*, age unspecified, South Africa, Digital news)
“I have dealt with colds in the past that were worse than this” (Wanda*, 22 years, USA, Twitter)
“…myself young, relatively fit, it was mild. There was fever, there was coughing and I think I got off pretty easy” (Tony*, Age unspecified, Canada, Digital News)
“I think we have to calm down because for most people like myself, it’s just a long cold that we can shake off…” (Belinda*, 29 years, Australia, Digital News)
“I had bad flu and it’s gotten quite worse than this. That’s the most frustrating thing about this, is that you don’t know. It comes and goes. I wake up in the morning and I’m not feeling great, then I feel okay, then I feel worse again.” (Anton*, 40 years, South Africa, Digital News Interview)
“It wasn’t touch and go, it was all go. It was bad…“I’m in pretty good shape so the virus was like, I’m gona fix you, you think you’re healthy, let me show you what I do to healthy people, and it started turning my lungs into glass” (Kirk*, 55 years, USA, Facebook)
“I had never been this ill in my entire life, I was genuinely afraid I would die because that is what it felt like” (Alice*, 22 years, USA, Twitter)
3F Response (Fright, Fight or Flight)
It would appear that there are a number of ways individuals responded to the disease as a threat. There were those who were fearful and experienced somewhat of an existential crises (fright); those that demonstrated strength, resilience and positivity (fight) and those that attempted to ‘travel’ to a place of safety as part of their coping (flight).
“…you choke, you throw up, the pain, the headache… but that’s what keeps you alive. … you think you’re gona die during those episodes, you know you’re gona die, but then you don’t… when your doctor says to you there’s nothing we can do, and you need to pray and beg God for mercy” (Kirk*, 55 years, USA, Facebook)
“I woke from sleep and was crying. I got to the isolation centre, but no one was there to receive me. I waited in the ambulance for two hours. The nurses eventually came out and treated me like a plague. I sat in the ambulance feeling rejected… “I thought I was going to die and contemplate(d) a succession plan” (Abiona*, age unspecified, Nigeria, Twitter)
“I was isolated; I found great strength in the doctors and paramedics, a lesson in humanity and professionalism, and of impressive dedication.” (Alberto*, 63 years, Italy, Facebook)
“I just followed the instructions even though I couldn’t accept the fact that I’d been infected. I couldn’t believe what I was hearing I thought maybe the test results were wrong. I thought to myself, this is the end of my life-but I have not done many things yet” (Adam*, 32 years, Malaysia, Facebook)
“This isn’t just the flu – and you aren’t invincible…asked my mom if I was dying today” (Lara*, age unspecified, USA, Instagram)
“Fear constantly lurking in the corner-waiting for a weak moment to pounce and invade, stealing all hope, while aggressively scattering thoughts of doom and destruction across the perimeter of your heart…and the temptation remains to tell ourselves we are safe at home” (Elizabeth*, age unspecified, USA, Instagram)
“Firstly, I had to talk to myself and meditate and say to me that this is happening and you need to accept it-it takes self-acceptance to be able to deal with the situation” (Constance*, age unspecified, South Africa, Digital news)
“and it came down to those moments of truth, where they can either lie to you or tell you the truth, no one could tell me I was gonna live” (Kirk*, 55 years, USA, Facebook)
Moral Obligation and Personal Agency
Innate within these stories, was the acute awareness of humanity. The nihilism of the experiences for some were transcended by intentions and acts towards non-maleficence. Individuals claimed to have acted decisively by self-isolation and seeking medical assistance. Personal agency was enacted by thoughts and actions towards valuing and protecting the rights of others, as manifested in their responses to the disease.
“I made a ham sandwich on the floor of my kitchen because I could not get up against the counter and table…I ate my sandwich on the floor with my employees at the door, begging me to let them in the house – I said no.” (Kirk*, 55 years, USA, Facebook)
“I am petrified for my parents, I’m petrified of the impact that I can have on my parents and the elderly and weak people in society and that’s what everyone needs to take home” (Anton*, 40 years, South Africa, Digital News Interview)
“…I work at the intersection of social justice and wellness, so I took this very seriously as an ally, I thought that would be my role, protecting the elderly, the auto immune suppressed” (Felicity*, 26 years, USA, Digital News)
“I wanna be a voice for this crazy virus but also show that I am ok…yeah everyone just try to stay calm and don’t get engulfed by all of the fear – I am a COVID-19 patient and I am doing really good.” (Kate*, age unspecified, USA, Instagram)
“…what you need to be scared about is the impact that you’re gonna have on society when you got it. That is what we need to be scared of…we put ourselves in the centre of the universe, everything is about us, and this virus comes along and if we are gona have this attitude that it is all about us then its gona win…if we start caring about the community and our impact in the community, then we are going to win” (Anton*, 40 years, South Africa, Digital News Interview)
“I had to stay indoors… I had to do it-for my children’s sake, for the community’s sake for everybody’s sake..this is real, let’s not take it for granted if you don’t quarantine and lockdown as you supposed to be doing we are not going to beat this pandemic” (Constance*, age unspecified, South Africa, Digital news)
“a coronavirus diagnosis is dehumanising and lonely, and I wouldn’t wish it on my worst enemy. You aren’t invincible because you are in your 20’s. take it from me and quarantine like your life depends on it (it might)” (Alice*, 22 years, USA, Twitter)
“The bigger issue is considering the sick and elderly in our community and keeping them away from people like me” (Kayla*, age unspecified, South Africa, Digital News)
Voicing Vulnerabilities and Harnessing Hope
The universality of being human, with vulnerabilities comes through strongly in some of the expressions, this together with interspersions of hope and even catharsis, by use of digital media in connecting with others. Spirituality also appeared to reside at the heart of acceptance in some cases, affording assurance of an ultimate horizon of well-being.
“…entrust yourself with confidence to those who are taking care of you, feeling at every moment that recovery is possible. This does not always happen, but it is necessary to keep hope alive” (Alberto*, 63 years, Italy, Facebook)
“I’m miserable and need a safe space to share. To connect. To not be lonely.” (Chanel*, Instagram, unspecified age and country)
“It’s really been incredible to watch everyone bond together in a mindful and conscious way, use technology as a conscious tool rather than just an app or a medium that we can share flippantly…this has been super cathartic for me..” (Lara*, age unspecified, USA, Instagram)
“We are confident that everything will turn out okay…I hear how people are going crazy about the virus but nobody fears eternity without God in the same way… I am not afraid of death” (Elsabe*, 43 years, South Africa, Digital Interview – Magazine)
The stigma around COVID-19 was strongly noted in the articulations of some individuals, resulting in feelings of shame and humiliation.
“I can still feel that people are treating me as if I am a monster, even though I have fully recovered… Netizens, who had learnt about my conditions, would share my family photos on social media. They highlighted my face and exposed the rest of my family to public scrutiny…I felt bad for my family. Some netizens even blamed me for bringing the virus back but in fact I am also one of the victims” (Adam* man, 32 years, Malaysia, Facebook)
“I think the stigma is there because people don’t understand the virus, neither do I, and I think the more we talk about it, the less the stigma holds power over it…Its heavy on your spirit and its heavy on your body, its heavy psychologically so you need all the support you can have from your family, the loved ones that are around you.” (Busi*, aged unspecified, South Africa, digital news)
“It was traumatising because there were people sending messages broadcasting messages on WhatsApp naming and shaming me. It was horrendous to say the least, it caused so much damage, not only to my company I work for, but for my self-image-I am broken because I can’t imagine that community you belong to can treat you like that” (Karen*, 27 years, South Africa, Digital News)
“…this doesn’t discriminate, it touches everyone as you have seen around the world, from Prince Albert to Prince Charles to me here…it doesn’t discriminate…try to be human, try to show kindness and compassion” (Busi*, unspecified, South Africa, Digital News)