The importance of telling our own stories of life with coronavirus – a conversation with the Covid-19 Recovery Collective

The importance of sharing our own stories cannot be underestimated, and it was for that reason that it was so uplifting to speak to Ed Richardson from the Covid-19 Recovery Collective about their work. A collaboration between the technologist and his friend Jane Ireson, an NHS nurse and researcher, they set up a website which invited visitors to submit tales of their own experiences.

As you can find on their website what came was a wide variety of stories which also reflected similarities and provided reassurance to people at times when there was considerable uncertainty about Covid-19 and the Long Covid symptoms that were being reported by many. Through funding from Sheffield Hospitals Charity research has been taking place this year to perform a thematic analysis of the stories, identifying common themes and helping shape insight into what recovery from Covid looks like for different people. It was inspiring to speak to Ed about the work that he, Jane, and others have been doing, and if you haven’t already I’d recommend taking a look at the stories they have shared.

• You can listen to Covid Matters on Spotify, Apple Podcasts, YouTube, Acast, and wherever you listen to your favourite podcasts.

Takeaway quotes from the episode

1. On initially setting the collective up: “There was a sense from the media that this was a two-week illness, and we were establishing very quickly that lots of people were experiencing illnesses far longer than two weeks. There wasn't that much support there for people, so providing some support and reassurance was a key part of it, and why we decided to start the website. The website was very simple. It was just an ability for people to submit their own experiences of Covid-19. But it was a place where other people could come, read stories, and reassure themselves at what they're experiencing wasn't unlike what other people were experiencing.”

2. On what can be taken from the work the collective have done: “The hope is that we can draw something from the data which allows people to deal with a potentially similar situation in the future, where healthcare services are under duress from something they've not dealt with before. The other part is the the sense of community that came out to that situation, the sense of people looking to others, for support, and how, in some part digital services fill the gap on a global basis – where people came together to share stories, create communities, reassure each other in a positive fashion, over Covid-19. The interesting thing was that that wasn't facilitated by any government organisation.”

3. On research now taking place: “The research is reaching the concluding part of the analysis side. We've been working as a team of four, bringing in some other people to help us with the analysis, primarily to make sure it is objective – and also to put some additional rigour into the methodology being used. The analysis and coding of the stories has been completed, and now we're forming a paper which we hope to publish in a professional healthcare journal.”

4. On the feedback which kept the work going: “I wasn't significantly ill… but I was reading stories of people who have been seriously impacted by the illness, and I think that encouraged me more than anything to continue with the work. You started to receive messages from people just thanking you for setting up the website, and that did spur me on to go 'okay, this is important'. What we're doing here is important and it really is helping people. By reading the stories, you're reflecting on your own illness.”

Episode transcription

This is an automated transcription which will contain imperfections. We’re looking for volunteer transcribers to brush these up, so if interested please get in touch!

Michael MacLennan  

Hello, my name is Michael MacLennan, and welcome to COVID Matters the podcast produced by COVID aid. Miss episode, we're speaking to Ed Richardson from the COVID-19 recovery collective. In our chat, he speaks about the collective and how it came to be and what it's all about. So I want to spoil that for you. But I would highly recommend that you visit their website. It's full of powerful stories about people's experiences, I hope you enjoy the chat.  I'll be back afterwards to tell you about about the charity and what we have coming up. 

Michael MacLennan  

To begin with, what is the COVID-19 Recovery Collective, and how did it take shape,

Ed Richardson  

The collective isn't very large, it's myself and a good friend called Jane Ireson. In the early stages of the pandemic we both caught COVID, although mine was only suspected COVID. I'll get onto that in some more detail later on. But Jane, who works for the NHS and is a nurse, was tested almost immediately and had a positive test. 

Ed Richardson  

I think we both wanted to do something that we thought was going to have a positive impact, after what we saw was happening around us. And so after a brief discussion, we decided to start a website that would allow people who potentially have COVID to submit their stories and their lived experience of COVID, and how their recovery – or lack of recovery – was going. Almost immediately there was a sense from the media that this was a two-week illness, and we were establishing very quickly that lots of people were experiencing illnesses far longer than two weeks. There wasn't that much support there for people, so providing some support and reassurance was a key part of it, and why we decided to start the website. The website was very simple. It was just an ability for people to submit their own experiences of COVID. But it was a place where other people could come, read stories, and reassure themselves at what they're experiencing wasn't unlike what other people were experiencing.

Michael MacLennan  

And what were the types of stories that started coming in?

Ed Richardson  

It's interesting, so where I'm sure at this late stage, we're doing some research on the stories now. The chronological order of the stories is quite an interesting factor. Their stories vary from the beginning to the end, partly as society and infrastructure developed around the pandemic, providing better services. The initial stories were stories of 'I wasn't expecting this, and am I alone in this experience?'. But it did start off with tales of the initial infection and feeling iller than they expected, but often a sense of recovery and then a decline in their well being and health afterwards. 

Ed Richardson  

The stories were very personal, because it was affecting a lot of people's family lives and their impact on their work and their day to day, as well as their own mental health and physical health. So they were quite moving and emotional stories, and but also a sense of wanting to connect with others having the same experience.

Michael MacLennan  

And were there any that you found particularly powerful?

Ed Richardson  

There's several stories that brought a tear to my eye. We've published about 80 stories, but we've had over 100 submitted – some of the stories we decided not to publish. Some as they weren't as relevant, but other stories contained information that we decided not to share in the public space. We got some international stories. But yeah, there were several stories that certainly encapsulated a lot of the key factors that were appearing in the stories. But I think one of the things that we certainly I certainly I learned from the site and setting up the site  was every story is slightly different. To bring any focus on any particular story wasn't the right thing to do, because there are very personal emotive stories for each person that submitted them. So whilst in the research, we possibly found ourselves going to seven or eight stories that have been submitted, trying to get a wide scope of that sort of qualitative view has been an important part of the way we've reviewed the stories.

Michael MacLennan  

Has there been anything that's surprised you in terms of maybe the variety of the stories or some of the details?

Ed Richardson  

I think there was periods of frequency of the submissions which was quite interesting. Initially, there was a slow pace and I think we we were struggling for impact in terms of accessibility on the on the internet – because at the time when as the pandemic broke, all the big news sites were getting all the search. But over time the  website established its own footprint in search, so people were finding us more. And then there was there was a couple of periods where we had on a weekly basis, we were getting four or five stories submitted. 

Ed Richardson  

Aas we came out of the first wave you expected things to slow down, but it didn't slow down at all. And I think that started to give you the realisation that this wasn't something that was going to be a short lived experience for anybody, that the pandemic wasn't going to be something that was going to be a first wave, and we're going to be done by last summer. This is going to be something that is going to be with our society for quite some time. That was surprising, as well as severity of some of the illnesses. The other thing that came through early on was, this wasn't an illness or disease that was affecting people who were not physically well. I knew several people who were very fit and healthy, who had been severely impacted by the infection.

Michael MacLennan  

Was it in December, when you then got funding?

Ed Richardson  

It was in December. We started talking about the site in April 2020 and then I think we published our first story in May. You start these things and you're not quite sure what the outcome is going to be, but you think, Okay, well, let's start it and see where it takes us. I think in the back of our minds we'd always thought about the possibility of doing some qualitative research on the stories that have been submitted. But we never knew how many stories were going to get submitted or how the site would grow. So you kind of have to develop your objectives as you go along. By September, October, we were thinking, okay, we've got a good body of data here. And I think it'd be interesting to start doing some research on it. And that's when we started looking around for some funding, we made some contact by that point. A number of the professional healthcare services, and also the academic institutions were getting interested in research, so a number of funding opportunities were coming in. Jane was involved in a number of other bodies that were talking about research. We were in touch with a number of bodies. It was around December: November when we started looking for funding, and it came through in December.

Michael MacLennan  

And how things evolved since then.

Ed Richardson  

Interestingly, you know, there's I guess there's two parts of that story. The first part is with the site itself, and what we're doing then. The research has become predominant over the site, the number of site stories submitted to the site over the last two or three months has slowed, which, in lots of ways we're taking as a positive thing as the effects of the disease and so on are slowing. But the research has intensified but not delivered as fast as possibly we might have thought it would have been. As we come out of lockdown our day-to-day lives become more and more demanding. You remember pandemic period: yeah, we have kids at home, and the pressures of work life and school and so on were more demanding. But you were finding space to do things such as the as the website because it was important and now the pressures of the life that you had before the pandemic are returning and filling some of those gaps. You're not finding as much time to do the things you want to do and things that you do in, for want of a better word, spare time.

Michael MacLennan  

And so what's the current status with research and what are you planning to do in the future.

Ed Richardson  

The research is just reaching the concluding part of the analysis side of it, we've been working as a team of four, we brought in some other people and so on to help us with the analysis, mostly to make sure it is objective – but also to put some additional rigour into the methodology we were doing. The analysis and coding of the stories has been completed, and now we're forming a paper that we hope we're going to publish in a professional healthcare journal. It's been interesting looking at the without revealing too much the the data, the number of different stories, I think that the initial paper will be around the lived experience of COVID and diagnosis and care of COVID over the pandemic and how how patients or participants experienced the disease and how they experienced their relationship with services that were delivered. 

Ed Richardson  

One of the key things was this was a novella virus. Healthcare Services didn't know how to deal with the disease and its symptoms in the first instance. So there was a lot of trying this and trying that. And now healthcare services have developed around that, so they're much more aware of how to deal with the disease. The hope is that we can draw something from the data that allows people to deal with a potentially similar situation in the future where healthcare services are under duress from something they've not dealt with before. But I think the other part too, actually – and this is very prevalent for what the conversation we're having right now – is the the sense of community that came out to that situation, the sense of people looking to others, for support, and how, in some part digital services fill the gap on a global basis, where people came together to share stories, create communities, reassure each other in a positive fashion, over COVID. The interesting thing was that that wasn't facilitated by any government organisation. At the time, you know, it took several months before government organisations around the globe, really caught up to speed. But how that came out of, I guess, individuals like ourselves, who thought there was a need for this, and a series of groups were born that helped people with  these services while the government caught up.

Michael MacLennan  

It's one of those things that I thought when I was looking at the stories on your site, and thinking about the nature of recovery, I thought about how fitting it was Covid-19 Recovery Collective in the sense that there is something about that collective experience that has really aided people at a difficult time. I was wondering whether there's something you've personally got from having been able to tell the stories of others and showcase these, and be able to highlight them in such a way?

Ed Richardson  

From a personal point of view it's been an interesting journey. At points there was almost a sense of guilt that the the COVID infection I believe I had was very light in its in its symptoms. I was off colour, for want a better word, for about a week. My daughter felt similar. But three or four weeks later I developed a couple of sinus headaches – that was something that was very prevalent for me, I'd had sinus headache which went on for weeks, but also a sense of brain fog. I spent a fair bit of time on self-reflection myself, and trying to establish whether the brain fog was from the pandemic, or the experience of the pandemic, or whether it was a symptom of the illness. But at the same time, I wasn't significantly ill, it didn't impact my day to day life for a long period of time, it slowed me down at running for a while. But then I was reading stories of people who've been seriously impacted by the illness, and I think that encouraged me more than anything to continue with the work. You started to receive messages from people just thanking you for setting up the website, and that did spur me on to go 'okay, this is important'. What we're doing here is important and it really is helping people. By reading the stories, you're reflecting on your own illness. Am I in the position here that I can justify doing this, am I part of this collective? But I think it didn't matter anyway, because you could see the value that people were getting from the stories and submissions on the website, and that was the most important thing to focus on.

Michael MacLennan  

Finally, what difference would you like the collective to have made?

Ed Richardson  

Removing that sense of people being isolated and alone. There was a lot of people who were quite scared, with a lot anxiety and stress caused by the illness. But it wasn't just the illness that was causing the anxiety and stress: it was a lack of recognition from professional bodies and governments at the time that this was a much more serious illness than perhaps people initially thought it had been. By bringing people together and sharing stories and facilitating others to be able to read those stories was a really important part of the work we were doing. I think that's the thing, that continued sense of being able to facilitate that in the hope that, were something similar to happen in the future, that others would take something from that and realise the benefits of providing such services.