A Brief History of Illnesss Narratives

Excerpts from an interview with Dr. Samantha Allen, an expert in the history of illness narratives in the United States.

What is an illness narrative? 

So an illness narrative, just some sort of definition, is any kind of narrative about an illness that can be something like a patient story that's in a doctor's office. But for my interest, it's something that's sort of a written down record of illness -- people writing or people speaking about illness, 

Why are illness narratives important? 

Illness narratives are important because we need to understand the actual experience of illness. You can read about symptoms, you can read about illness. But the only other way besides experiencing yourself is to try to understand from another person's perspective. And so being able to look at some sort of artistic expression, whether it's something like art or music or just stories we can sort of understand and especially help medical professionals understand what the lived experience of illness is, what it's like for patients, sort of the fear, the trauma that goes into it. So it's a much more holistic way of looking at illness. We can use that form of artistic expression in medicine to help both medical practitioners and just sort of our general understanding of what medicine and what care is.

 “Those that fail to learn from history are doomed to repeat it.” - Winston Churchill

How have illness narratives evolved? And how would you compare historical illness narratives to what we're seeing today with COVID?

The invention of the Internet and the use of the Internet has really changed how we tell illness stories. Now, anyone with Internet access and technology can write, which means that a vast majority of Americans have the ability to share their story in some way, shape, or form. Because of that, we have accounts of just about every condition, illness, and disability that is out there. We have many people telling their stories and there's less gatekeeping. We're getting this immediacy with these stories. And so you can see the kind of chaos that goes on with illness. It's less mediated, it's less thought about, it's more just sort of like, here's what's going on. And to me, I think this is actually an improvement because we can see what it's like for someone in real-time almost.

Why do you think it's important that people are sharing their experiences with covid now? 

Well, right now we need advocacy, we need better policy. And honestly, we need people to believe that this is a serious illness. We have a lot of Americans who do not believe that this is something that is worth shutting down for or for creating policy or even wearing a mask for. So in the immediate future, we need people to understand that this is real, that it affects people, that people die from it, that people are very, very ill. We need that. We need to make this real for people. And that's why narratives are so wonderful. You can read as many news stories as you want, but when you hear someone talk about it, when you see that person and they become real, you can sort of understand. And that really does help people understand what is happening. 

But we also need this for the future. I've heard many people say, oh, in five years, we'll barely remember this or this will just be a blip on the radar. And I don't believe that for a second. I think this is life-changing and we're going to be able to look back on this and see this really as a pivotal moment in our history. But we need to remember this because if we forget this, we're in for a lot of problems in the future. 

Our policies right now with covid and our state of public health in the United States is miserable. We are not handling this well and we can compare ourselves to other nations. We are doing a terrible job and we can try to turn this around and do better for covid. But what's really important is that we develop better public policy for future epidemics and pandemics because this will happen again. It might not be Covid, but it will be something else. And we need to be able to have funds. We need to be able to have plans. And so the more that we record our stories, it's helpful now, but it's helpful for the future so we can figure out what we need to do and we can take this seriously as a society.