Undisciplined: Sick And Tired

Sep 2, 2021

Credit Cover of “Sick and Tired: An Intimate History of Fatigue,” by Emily K. Abel

This week we're talking about fatigue. And no, it's not the same as being tired. Despite it being the top complaint among people with chronic conditions and those recovering from cancer, fatigue was largely ignored by the medical establishment until recently. We'll be talking to medical historian Emily K. Abel about her new book tracing the history of fatigue in the United States.

Emily Abel is an emerita professor of public health and women's studies at the University of California Los Angeles and the author of the book Sick and Tired: the Intimate History of Fatigue, published by the University of North Carolina Press.

Transcript:

Shoshannah Buxbaum  0:03  

This is undisciplined. I'm Shoshannah Buxbaum. This week we're talking about fatigue. It's frequently the biggest complaint from people recovering from surgery, cancer or living with chronic illness. Yet until recently, it's been largely ignored by medical researchers and not always taken seriously by doctors. There's no blood test to diagnose debilitating fatigue, and everyone gets tired from time to time, so it's hard to understand its effects if you've never experienced it, and our American obsession with productivity doesn't help either. After a cancer diagnosis, treatment and years of unending fatigue, medical historian Emily Abel, decided to chart the history of the commonly overlooked malady. Emily Abel is a professor emerita of public health and Women's Studies at the University of California, Los Angeles, and the author of the book sick and tired the intimate history of fatigue published by the University of North Carolina Press, Emily Abell, thank you so much for joining me. 

Emily Abel  0:59  

Well, thank you for inviting me. 

Shoshannah Buxbaum  1:01  

Okay, so let's start with the basics here. What is fatigue? Exactly? Like how would you define it? And how is it different from being tired? For example.

Emily Abel  1:12  

The problem with what you're asking me is that fatigue really is a very ambiguous notion, we we talk about it in all sorts of ways right now, people are talking that they are getting pandemic fatigue, with this new variant. So it can mean a lack of energy it can be, it can mean just plain tiredness. Sometimes it's a euphemism, sometimes it means idleness. I use it really to talk about what I call chronic fatigue, which is very different from acute fatigue, because it lasts a long time. And it is not usually relieved by sleep.

Shoshannah Buxbaum  1:55  

Yeah. So is that part of the problem is that we use the word fatigue in like so many different cases that it's hard to distinguish what you're describing of this long term period of fatigue versus what we're talking about of fatigue of hearing about the pandemic or something like that.

Emily Abel  2:14  

Absolutely. And people always say, Well, I'm fatigued, I'm tired. And other people say, Well, you know, drink some tea, drink some coffee. There isn't awareness, a lot of awareness of chronic fatigue, which is very different from the kind of fatigue that most people feel at the end of the day of the end of a hike, when they're just, you know, they say I'm tired. And then they get some rest or they eat something. But Chronic Fatigue is is different.

Shoshannah Buxbaum  2:44  

Yeah, yeah. And so you talk about in this book about having this sort of life altering bout of fatigue, after you had treatment for cancer. Can you tell me a little bit about that experience, and why that motivated you to write this book and look into the history of fatigue?

Emily Abel  3:03  

Right I-It was partly my experience. Because it was so odd. I'd been somebody with an enormous amount of energy. And then after cancer treatment, it I, I just felt totally different. But really, what motivated me more than my feeling was the fact that nobody took it seriously. Everybody said, Oh, well, I'm, I'm tired, too. And also, doctors have no interest in fatigue, or at least the ones I consult that I like my doctors very much. But I couldn't find one who took fatigue seriously at all. And eventually I just gave up trying.

Shoshannah Buxbaum  3:42  

Yeah, yeah. And I think that's a common experience with folks that are dealing with fatigue for a variety of different issues. And so I myself, was diagnosed with a chronic pain condition many years ago, and then had hip surgery about like five years ago, and like, the experience of intense fatigue that I had for almost two years after my surgery was like nothing I ever experienced. And my surgeon did not explain that to me in any type of way that I understood. And I was very young at the time, I was still in my 20s it was almost impossible to explain that feeling. I guess if you've never had it before.

Emily Abel  4:18  

Yes. And it's actually similar to pain in that they have as acute pain. There's chronic pain, people don't want against it, although that is changing with cancer treatment. I think that oncologists have started to warn people on people that the treatment could have long term effects now that more oncologists have realized that this is a serious problem.

Shoshannah Buxbaum  4:43  

So why is it so hard to get to get doctors to sort of understand fatigue and like the side effects of different therapies like chemotherapy for cancer or other types of surgeries, treatments, chronic illnesses, like why is it so for medical professionals to sort of wrap their heads around this phenomenon?

Emily Abel  5:04  

Well, I think partly doctors don't really listen to patients. And that's one difficulty. And they base things on tests. And I should also speak about people with chronic fatigue syndrome. We're hearing much more about that now. And we're hearing much more not just about pandemic fatigue, but about these long haul us who are suffering from fatigue more than anything else. And they're having a lot of trouble getting other people to take them seriously.

Shoshannah Buxbaum  5:37  

Yeah, I definitely want to get into the long hollers. Because I think that's definitely a really pressing sort of issue. So I'll definitely we'll we'll definitely circle back to that. So one of the things that you touch on in your book that I found really interesting was this idea of recovery stories and how they play into our understanding of fatigue. We hear this sort of narrative, a lot of the woman who beat breast cancer, and now she's running a marathon, or similar sort of stories of triumph. So how does that play into our understandings of fatigue? 

Emily Abel  6:11  

Yes, I think we are. And we're conditioned to think that if something happens, like surgery, or cancer treatment, and we survive, then we should recover. And, and we all want to recover. So that's not surprising. It's the it's the problem with saying we should that we have to that makes that that gets us all into trouble. Because there are many chronic conditions. And I think a society is just beginning to realize how important chronic chronic conditions are not just acute ones. And, again, I know you said you want to talk about long haul, long haul COVID later, but we can jump into it now. Okay, I think that's a really good example. Because for so long, we just heard how many hospitalizations how many people recovered. And suddenly, it was the patients themselves who started saying, you know, I feel terrible after months. And nobody took them seriously. I actually have a son in law who was ill for seven months. And the only way he could get anybody to listen to him was to join a support group and find other people who are suffering in the same way.

Shoshannah Buxbaum  7:31  

I did some reporting last summer on long COVID patients, as well. And a lot of the folks that I talked to said, you know, they'd go to the doctor, and they'd say, you know, I had COVID, or I suspect I had COVID. But it was before though it was the very beginning before you could even get tested. And they said, You know, I have these really crazy symptoms that just aren't going away. And the biggest one that everyone told me was fatigue, like, they just could not go to work. They couldn't do what they were doing before. And like you had said, they go to the doctor and the doctors like, well, the World Health Organization says that COVID symptoms should last for only two weeks.

Emily Abel  8:10  

Yes. That's exactly what they're told. And I hate to say it, but long COVID has helped to direct some attention to fatigue, because so many long haul is saying that is the condition that really has changed their lives that makes it possible to work, or really just enjoy leisure or their families or anything else. So I wouldn't wish this on anybody. And I really horrified by how many people are suffering in that way. But it has served to focus more attention on fatigue.

Shoshannah Buxbaum  8:52  

And I think, though, that too, when people talk about the threat of COVID, they often overlook long COVID. People are talking about it more now. But I think even with as we've seen this increase in the Delta variant, people are talking about less people are being hospitalized, but you can still get long COVID even if you have sort of, quote unquote, minor symptoms. So I think people still aren't really factoring that into the bigger picture.

Emily Abel  9:19  

I think that's absolutely true. And I found very little about long COVID and with with these breakthrough conditions that people have, but I have to say every time somebody says not to worry, it will be a minor illness if you get it, I think, yeah, but when will I recover? Will I ever get better? So that's, that's really what scares me.

Shoshannah Buxbaum  9:40  

And I think that that's something that we don't really think about a lot as, as you sort of Chronicle through this, this book. And one of the other things that that makes me think about is our sort of like obsession with productivity. And so what role does that play in sort of understanding for Fatigue and then like the efforts to combat it?

Emily Abel  10:03  

Yes, well, I think in our society, we really link personal worth, to the amount that individuals can can produce. So if fatigue limits our ability to work, we really lose social value. That's something that people are discovering with long fatigue. Now, there are other reasons. There are other problems. Of course, with not being able to work, you know, people lose salary, people suffer economically. But I, what I was talking about was this sense of shame that people have, because we so much link productivity with our sense of, of human worth.

Shoshannah Buxbaum  10:43  

And you touched on this earlier, but I wanted to circle back on it of fatigue is often intermingled with depression and chronic pain. And you go into a lot of that research, because there's limited research on just fatigue itself. So how to, like conditions like depression and chronic pain, how do they overlap with fatigue? And how are they sort of separate or different from fatigue?

Emily Abel  11:09  

Well, I would say that actually, both of those conditions are very similar to fatigue, nobody takes you seriously, they last for a long time, they can't be seen. However, they are really different. The problem with a close connection between fatigue and depression, is that people who are fatigued are automatically seen as depressed, they'll be the seen as inventing their symptom, or they're seen as it all being a mental health problem. And people do get depressed because they have fatigue. But depression and fatigue are very different. And when I finish cancer treatment, and start to tell people that I had this, you know, lingering fatigue that was interfering with my life. Everyone said, Everyone, physicians, Doc, you know, the doctors, friends, family all said, well, you must be depressed, you really should get mental health help. So I went to a psychiatrist who said, you know, you don't seem depressed, you just seem tired, right? It was really helpful.

Shoshannah Buxbaum  12:18  

Yeah, yeah. And so, you know, patients go to the doctor, and they're looking not just for sort of treatment, but they're also looking for validation to say, what I'm going through is real. It's not in my head, and then it sort of circles into this sort of like, doubt spiral of like, Am I causing my own symptoms? is what's going on really real? Can you talk a little bit about where this idea came from that a patient is like causing their fatigue or causing these sort of long term physical symptoms? Because I think it seems pervasive.

Emily Abel  12:51  

It's absolutely pervasive. People say, okay, you're depressed. That's one thing they say. The other thing they say is, I guess you Emma lingo, I guess you really don't want to work. And that's a terrible thing to say to somebody who has been trying so hard to regain a kind of productive life. And people are saying, Well, you know, if you really want it to work, you could do it. But you're, you're Malinga, you're really trying not to work. We shouldn't take this seriously. And that also causes people a lot of harm.

Shoshannah Buxbaum  13:28  

So you talk a little bit about in the book of this, like psychosomatic sort of movement. Can you talk a little bit about that, and how that that movement seeped into our cultural understanding now, fatigue?

Emily Abel  13:40  

Sure there-I actually grew up in the 1950s, when the psychosomatic movement was very pronounced. And so I did grow up thinking, anytime I was ill, I should look for some psychological reason. And that was very, that was very common in the 1950s. And it made it much more difficult for me when I when I did experience fatigue, I think I was primed to say this is a psychological issue, because I had grown up when that when that movement was so dominant. I mean, I would say there is there is of course, a whole field of medicine called Psychosomatic Medicine, which is very important, and is not treated seriously. I think the problem is that when patients come with a physical problem, and there is no obvious medical solution or medical explanation, then doctors say, Oh, this must be a mental problem. But I really, I don't want to cast I don't want to cast any, any doubt on Psychosomatic Medicine as a field, which is You know, a wonderful field in many ways, right?

Shoshannah Buxbaum  15:02  

Right. Yes. So, in the book, you talk about neurasthenia. And it was a common diagnosis at the turn of the 20th century. So can you tell me briefly sort of what is it? And what were the treatments for it? And why did you decide to focus on this in the book?

Emily Abel  15:20  

Yes, well, neurasthenia was a condition that was sort of discovered in 1869, by George beard. And he said it had many symptoms, but the most common one was fatigue. He also claimed that it affected people, mostly people of the higher social orders, in other words, people who use their minds instead of their bodies in work. And so it, it sometimes it became almost a fashionable diagnosis, I should say, in looking at neurasthenia is really important to a medical historian, because it makes us understand that some of our disease classifications go in and out, they aren't all stable. Heal is a condition that many people thought they had, at one time, and we never hear about it now.

Shoshannah Buxbaum  16:13  

It kind of lost favor, and that was because they discovered that it wasn't an accurate grouping that people maybe had other disorders. Can you kind of talk about why it sort of came in Vogue, and then why they stopped diagnosing people with it?

Emily Abel  16:28  

Yeah, you know, I, I don't really know why they stopped diagnosing people, but they did, you know, by the 1920s, and started looking at other conditions more seriously.

Shoshannah Buxbaum  16:41  

Hmm, yeah. And so, sorry, go ahead.

Emily Abel  16:44  

I was just going to say neurasthenia there were no diagnostic criteria for neurasthenia like fatigue, like some of these other conditions. So that also made it suspect. But it was something that people could take a little pride in is a lot of a lot of very famous people thought they had nervous thenI people like William James, Virginia Woolf, they were people who had a lot of status in society, and were very productive. 

Shoshannah Buxbaum  17:14  

And so what were the treatment for neurasthenia? And was it different, and I think it was different for men versus women, right?

Emily Abel  17:21  

It was definitely different. The major treatment for women was the rescue. And that was, I would say, invented really by a doctor named s we are Mitchell. A lot of people have seen the rescue as something terrible that was done to women, actually Mitchell device that after he saw soldiers in the Civil War, who had had what he considered newest, that neurasthenia here. But it was women much more than men who were told that they should go to bed, they should lie down, they should have no no stimulation at all. There's a very famous description of it by Charlotte Perkins Gilman called the Yellow Wallpaper. It as she even acknowledged that was sort of a caricature. The Yellow Wallpaper really became standard, a standard book in all Women's Studies, courses to show how terrible men treated women. But even she said, You know, it wasn't quite as awful as that. However, Virginia Woolf also spoke about it. Some, and in Mrs. Dalloway. She talked about somebody named Septimus Warren Smith, one of the characters who committed suicide because he was so afraid that he would be sent to a doctor's rescue. Now that was in England, obviously, not in this country. But it really reflected Virginia was belief that or her experience of the rescue, which was so terrible. But you said, How was it different for men and women? Often men were told that they should go west. So men were prescribed with an active kind of solution to the problem. Women were more often told that they should take to their beds.

Shoshannah Buxbaum  19:26  

Yeah, that's so interesting. I mean, it's sort of like they're diagnosed with the same condition. But our remedies are dependent on our sort of understandings of gender.

Emily Abel  19:38  

gender, Oh, absolutely. But also class. Because you couldn't tell a working class woman that she should take to her bed. Nobody ever did. But you know, the probably the most tired person in many of these houses, was the domestic worker who, who had to go home every night who really worked hard, and nobody took that person. Fatigue very seriously.

Shoshannah Buxbaum  20:02  

Yeah, you also talk about this sort of difference between neurasthenia, and this sort of upper class fatigue sort of thing. And then, as compared to working people and like ways to optimize working class people, or people working in factories, that they don't experience fatigue, there was like this whole sort of scientific understanding of like, the differences between classes.

Emily Abel  20:26  

Well, they were lots of different understandings, there was something called industrial fatigue, at the turn of the 20th century, and that was focused on working working people.

Shoshannah Buxbaum  20:38  

So what led to that sort of disregarding the sort of industrial fatigue?

Emily Abel  20:45  

Well, I think it was partly, the trade union movement lost a lot of its power. And also, somebody named Frederick Winslow Taylor, became very concerned, he, he really was not concerned with fatigue, he actually said that, not doctors, but workers in engaged in something called soldiering, which meant that they, you know, they took too many breaks, they loved a lot. And he said, The problem was really psychological and productivity dependent much more on the psychological state of workers than on their working hours. And that was not very helpful for workers at all.

Shoshannah Buxbaum  21:34  

And now we talk a lot about burnout. And that that affliction, I guess, can be viewed as a form of intense fatigue. And that sort of only affects the sort of like higher managerial class of workers. We don't talk about burnout for people that are working two to three minimum wage jobs just to get by.

Emily Abel  21:58  

No, no. And burnout is a kind of stress. And stress really came into vogue after World War Two, so that concerns with fatigue really disappeared. And fatigue and stress are similar, but they're not the same thing. Studies have shown that the poorest paid workers really do experience the both stress but the the kind of stress management programs, we have all focus on professionals and executives.

Shoshannah Buxbaum  22:29  

Yeah, so there's sort of this mismatch. I absolutely. Looking through the history of fatigue, and looking back on the past 100 years or so, or a little more, what do you think? What can we learn from our cultural and time based understandings of fatigue? And how can that be used to understand our current? The current moment we're living in?

Emily Abel  22:53  

Yes. It's a interesting question. You know, a lot of things are happening that are good, they were more and more support groups for people who have some of these invisible conditions. And some of these, some of these support groups have really become really turned into social movements. That certainly has happened with the chronic fatigue syndrome movement, there's a very good you know, it's called M.E. action, which is take it brought a lot of attention to chronic fatigue syndrome. And I, I think that I guess I would look really, to some of the sufferers to improve things that I think they really have done that and they're, they're working hard at doing it more.

Shoshannah Buxbaum  23:50  

So you think that we're at a point where people are starting to pay attention to this to fatigue more and all this sort of like associated conditions, and they have in the past?

Emily Abel  24:00  

I wouldn't say it's, you know, overwhelming, but I would say that they were movements that are trying to direct my attention. And also, I would say, unfortunately, long hauls COVID, has directed attention to this. And I think that there's more and more funding now, for fatigue. For years, there was very little. And recently There has been much more, which is of course, one thing that people in the social movements have wanted.

Shoshannah Buxbaum  24:33  

So hopefully this is a turning point. And there's more funding for this important type of research. But Emily, thank you so much for being here. I really enjoyed reading the book and having the opportunity to talk with you more about it. 

Emily Abel  24:50  

Thanks very much for inviting me. 

Shoshannah Buxbaum  24:53  

So I've been talking with Emily Abel. She's a professor emeritus of public health and Women's Studies at UCLA and she's The author of sick and tired and intimate history of fatigue, which was published by the University of North Carolina Press. undisciplined is a production of Utah Public Radio, with support from the College of Humanities and Social Sciences at Utah State University. And if you happen to live in Utah, you can listen to us every Thursday at 10:30am on UPR. If you miss us, then you can listen to every episode of undisciplined wherever you get your podcasts. This is our producer Naomi Ward's last episode. Naomi, thanks so much for helping make this show possible. And this week's episode was mixed by Clayre Scott. She'll be taking over as the show's new producer. Our theme music is a little idea by Benjamin Tisso and I'm Shoshannah Buxbaum. Thanks for listening. Now go have big ideas.