Apparently Recovered: An Interview with Monika Pietrzak-Franger on her New Visual Study of Long Covid

Genevieve Smart interviews Professor Monika Pietrzak-Franger on Apparently Recovered: A Study of Long Covid. The interview focuses on health invisibility, stigma, and the right to hope.

Genevieve: We are delighted to welcome you to a conversation today about a very exciting new publication in the Medical Humanities. We’re sat here in a currently very hot University of Vienna. You’re joined by myself, Genevieve Smart, a scholar of queer modernism, psychoanalysis and the Medical Humanities, and I am with the wonderful Professor Monika Pietrzak-Franger. Monika has published what I believe to be a very innovative contribution to the field. In English, the title is Apparently Recovered. It’s a study of Long Covid, but it’s presented in this beautiful, glossy magazine form and it has a multitude of disciplines in it. We have cultural analysis; we have interviews with people suffering from Long Covid, artistic documentation, and history. The aim is to offer these nuanced insights into Long Covid as a lived experience, to critique the structural inequalities of our health systems and, finally, to make a case for hope.

So, hello, Monika.

Monika: Hello, Genevieve.

Genevieve: Could you please tell us a little bit about yourself, your journey into the Medical Humanities, and your journey into exploring narratives of ambiguous illness?

Monika: So, it started [when I was] 27 – a long, long time ago, about 20 years ago – when a colleague who was doing a PhD with me talked to me about a Polish painter who suffered from syphilis. He talked about how many photographs there were in the 19th century about syphilis. At the time, it was an invisible illness, and that’s very similar to what Long Covid has been for a long time, just like ME/CFS, and that was one of the reasons that I started doing research into ambiguous or invisible illnesses. What I’ve been interested in is to what extent invisibility, or what I call ‘healthy visibility’, has been a foundation for a number of inequalities. And that has been my work. So, when the pandemic happened, we got a project with the Medical University of Vienna about Covid-19. We called it ‘Post-Covid-19 Care’. It was clear, early on, that there was going to be something like Long Covid, and that we would talk about it for a very long time. Because there was invisibility in the medical profession at the time, but also in the media, this meant that people who are suffering from it had, from the very start, this burden of proof they had to prove somehow that they’ve got something that persists, something that the medical profession is not yet sure about, that there is little knowledge about. They themselves had to figure out, first of all, for themselves, [in terms of] what it feels like; and, second, [to] participate in the construction of knowledge about that, because nobody else was going to do that for them. So that was why I thought it would be important to talk about that. [I was] also [interested] from the perspective of a Visual Culture scholar who sees how many visual narratives and iconographies persist, and how stigmatizing they are. One of the early images of Long Covid in Britain, for instance, was this sort of tired woman on the couch. Tiredness has become like a metonymy for Long Covid, which it isn’t; it is just one aspect. It risks limiting the illness to this and then because of that trivializing it, and making it seem not that important. So that’s where it started.

Genevieve: So one of your goals, I imagine, is about representation, but also inviting people who suffer from it to be part of that representation.

Monika: Very much so. Also thinking about different types of narrative, different types of communication, and different iconographies of illness that are not as stigmatizing as the ones that we’ve got. That, of course, means that we should not be talking about that without the people who suffer from it.

Genevieve: Yes, absolutely. This part of your decision to make it into a very visual book with the magazine-style pictures? Was that about that theme of visibility, invisibility, and iconography?

Monika: Very much so. Because, again, the iconography that started to appear when media reported on Long Covid was the iconography that we know from the 19th century and hysteria. Very early on, it marked this moment of, ‘this could be something that is performed’, ‘it could be something that is not real’, ‘it could be something that is imagined and something that is en vogue’, right? Colleagues wrote about that as well. I thought it would be important to… I was angry actually. I was really angry that we live in the 21st century and we’ve got so many different types of media at our disposal but we’re still using generic images. We’re still using generic iconographies to talk about illness that we’re still not really sure about. I wouldn’t want this iconography to persist. I have been afraid of the legacy of that iconography because, as we realized when we were talking to the people who suffer from Long Covid, this is something that does have influence on their everyday lives. Because if people don’t believe that something like that exists, or if they feel that it is something that is imagined or performed, then the patients are not being taken seriously and a lot of gaslighting is happening.

Genevieve: Yes. Interesting. Why did you choose a magazine format rather than a photobook?

Monika: We talked a lot about that. My aim was to find out what the Long Covid – I’ll call them patients or interviewees, if that’s okay – what they would like us, the general public, to know about it, in terms of the changes in their body, changes in their perception, changes in their lives. But also what I wanted to do is change the perspectives on them as people struggling and living with this syndrome. So that’s why I used photography as well, to give them a tool with which they could show us the perspective they would like us to have. The preparation was I had some structured interviews and most of the time went with along the narratives of the interviewees. But I also prepped them on the phone [by telling them] that we would like them to show what they would like us to see.

Genevieve: Brilliant.

Monika: There was a lot of discussion about, ‘So are they going to take pictures themselves?’, ‘Are we going to take professional pictures?’ We agreed for various types of reasons on the second. We wanted to give them the space. The idea of the book – because that was your question, and I’m coming back to that – it was a long process. We started with a small format book. But then I wanted the book to be heavy so that people cannot read it in one go. So that it’s not pleasant to read in one go. At the same time, I wanted something that would encourage people to read about Long COVID, knowing that this won’t be an easy read. It would have to be something, in my eyes, beautiful. I was thinking about the research I did on the 19^th century and the sort of strategies of “sweetening the pill” and all the New Women writers who would publish information about syphilis in novels, so that the broad public would know about it.

So that was the intention, to have a glossy magazine that would preferably and ideally be lying in doctors’ waiting rooms, and people would grab it, be attracted to the form, and then start reading and then realize, ‘oh, actually it’s not about lifestyle. It’s about, it’s about something extremely difficult, namely Long COVID’, and an illness that has been related to a certain type of lifestyle. We had those discourses saying that it’s only people who can afford it and have the time that suffer from it. So I wanted to pick up this idea and criticize it through the form.

Genevieve: Which is a very luxury form. We have advertisements or [advertisement-]styles throughout, and there’s such a juxtaposition between how beautiful it is and how difficult the experience can be for so many people in the book. I was wondering about your ideal reader. You spoke about the waiting rooms, and I’ve also seen one of your readers respond to the book. I was really lucky to be part of an event at the University of Vienna where we presented research to the public, and one of the members of the public was so incredibly moved by it, and it felt amazing to be part of “Medical Humanities in action”. I was curious about whether your ideal reader was the general public? Was it someone suffering from Long COVID? Is it academia? Is it many [audiences] at once?

Monika: Many at once, but this one is for a broad public. In a discussion about that, somebody asked, ‘So you actually didn’t write that for the people [suffering]?’ I thought, ‘no, actually’. The thing is that most of the people who suffer from Long COVID know more about it themselves than what is in the book. In terms of information, they are much more knowledgeable about that. So in those terms, it’s not for them. It’s for them in a sense of this is an object that they can identify with. Because it spotlights a number of cases and a number of people who suffer [from it], and also the stories, and the variety of these stories, and the hurdles. But I think we still have got a lot of resistance in society, which does not believe that something like Long COVID exists or trivializes it. It’s for them that I wrote it.

Genevieve: I think this also relates a lot to the types of care we see encouraged in this book, which is not just about the individual care – because we have so many people in the book who are feeling very isolated – it’s about those structural changes and it’s about collective care as well. Did you feel after writing this that there is an ideal way people can be cared for if they suffer from Long COVID? Or does it depend on the person?

Monika: I have co-written a paper [Dreaming of Healthcare Infrastructures] about that for another Long COVID photo book [Fighters in the Crash Zone], this time with a friend who’s a medical historian and also a professor in the Medical Humanities. We came to a conclusion that Long COVID – and also a number of invisible illnesses and chronic illnesses – are conditions that our systems are not built for. We had this sort of imaginative thought exercise and experiment about what such a care would look like. We were thinking that it’s got to be networked. It’s got to spring up from existing structures, but have a number of levels. So it’s not only about the particular pathways that you can pick up, in terms of what sort of treatment you’re going to get or the healing afterwards. It’s also about the social structures. So what does it mean for a person who cannot open the door to have social contact during an illness like that? It’s clear that you need that. Otherwise, the healing process is what it is, right? At the same time, they cannot be exposed to the light. They cannot be exposed to the voices. So we were thinking also about locality as an important criterion in that, because it feels as though what the Long COVID patients can have in Vienna differs so much from what they can have in a rural area, and in Britain or in any place in Germany. So I think the most important thing would be to look locally at that. There’s not going to be a system that we’re going to come up with that is going to be applicable to every space, but I think thinking bottom-up and connecting institutions like theatres, universities, and schools would be the best way to go.

Genevieve: Absolutely. Your book has those collaborations too. We’ve mentioned the interviewees, the people who suffer from COVID; there’s yourself, you come at it from the cultural analysis and history; we have medics as well. So we have this example of that collective action.

Monika: It’s true. And also the photographer and the designers. They all belong to that project and it wouldn’t be possible without them. It would definitely be different.

Genevieve: I think this relates to what I believe is your contribution to the field. Because, although there is more traction around Long COVID now, it’s still under-researched, or at least “under-understood”. I also believe that the form is something really original. I was wondering what you see, or hope, is next for the field, whether that’s the Medical Humanities or specifically with [studies of] chronic illness.

Monika: What’s next for the field? I can’t possibly say for the Medical Humanities. I think it’s opening now to this [research] area of application, and application not only in medical schools – and that’s clearly very, very important; no question about that. This is a marriage that has been part of medical humanities for a very long, long time. At the same time, [it’s about] opening up to schools, opening up to the broader public. I think people don’t even know what [the Medical Humanities] is, if you think about it. The moment you start talking about it, they realize, ‘oh, actually I could also contribute to that’. What it does also, this opening, if you will – we also call that “translational” in the Medical Humanities – is help us in reflecting on what media does with us and our understanding of ourselves and health.

If we don’t bring this media literacy into that, the chances that we’re going to develop good health literacy are rather small. In the neoliberal world in which we live, we still need that. I don’t want to say that each and every one of us is responsible for knowing, and for being able to use narrative or storytelling to tell the story. But what I’m saying is that it would be important to stop and think about the images that we get, the messages that we get, and only then, after having thought about them, take them and do something with them, rather than simply reacting to them emotionally, right? Because this is what they are for to sell arguments, to sell certain ways of being. But we don’t have to do that. I think it’s important that we get that skill. This is also something that I wanted to do with the book [to think] about media literacy and health literacy on this level. Yeah. So I think this is where I would like to be going. There are other moments and other things that colleagues are and will be doing. I think this variety is very, very important.

Genevieve: That’s really interesting. I think the pandemic made it so clear how much images run our world, because in those moments when we were isolated and on screens, they played such a huge role in how it was all understood.

Monika: That’s it. We’ve got to finish probably, but [there are] just two things that I wanted to talk about very, very briefly. [Firstly,] this idea of living with Long COVID. Very often it is talked about as an instance of something, but at the same time, it’s a very, very long process, and I think in very many narratives, this doesn’t come through. Perhaps because of the invisibility of many illnesses this is something that we should be asking: not necessarily, ‘do we show it in the perfect way’, but ‘how do we change focus to talk about living with that particular condition and living with that particular illness rather than just spotlighting the fact that it’s out there?’.

Genevieve: Yes, that’s really interesting. I mean, living with it is showing us that this is an ongoing process; that this isn’t a sort of split binary between sickness and health and diagnosis and cure. And I think that that is so connected to how you end the book, really beautifully, with the right to hope. Because hope seems to be something which is about negotiating the ongoing struggle as well. Could you explain this concept to the listeners and how you see it in the in the context of Long COVID?

Monika: I’m not sure that I explicitly asked my interviewees whether they’ve got hope, but it always came up in the discussions. After we transcribed everything, looked at that, and started analyzing, I realized how many of them talk about hope. But at the same time, they talked about individual small hopes like that tomorrow they can go for another walk, or that the walk will be longer, or that tomorrow they can brush their teeth without spending one half hours on that. So these were tiny, little hopes. Then I started reading about hope, in philosophy and other areas. One of the philosophers [Stan van Hooft] wrote about the fact that maybe we should start thinking about hope not as an individual issue, not [as] pertaining to our own lives, but as a structure. The right to hope [means] that we have the right to a structure called hope and we’ve got access to that. What would that structure be? I mean, it’s a very abstract question. At the same time, I think this is something that we could think about if we considered hope to be a fundamental human right. What would hope-as-structure look like? How would that change our modes of living and thinking about illness?

Because, again, our society is turning into a society in which so, so many percent suffer from chronic conditions and invisible illnesses. Just ignoring that is not going to help. So I think this would be, first of all, a good exercise in thinking and then in restructuring.

Genevieve: Absolutely. To not be fatalistic about it as well. What a beautiful note to end on. Thank you so much, Monika, for joining me. The book is Open Access. We also have [writing on] one of the chapters translated into English as well. But it’s such a gorgeous book that I’d encourage anyone, whatever language you speak, to have a flick through.

Monika: Thank you, Genevieve.

About the author

Genevieve Smart is an interdisciplinary researcher at University of Vienna. In works traversing literary studies, film studies, psychoanalysis and the Medical Humanities, Genevieve examines portrayals of queer and technologically-assisted reproduction from the early 20^th century to present. She is a co-organiser of the reproduction research network, Broadly Conceived.