Healthcare / research

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November 5, 2012

To better understand how patients see themselves, we talked to University of Calgary professor Arthur Frank. Frank is the author of The Wounded Storyteller, a key text for understanding narratives about illness.

Andrew Benedict-Nelson: How would you describe the initial situation that prompted you to write The Wounded Storyteller? What does it tell us about the situation of the patient at the time?

Arthur Frank: It was a particular moment for me personally as well as a particular social moment generally. I had written At the Will of the Body, a memoir of my own experiences with a heart attack and cancer. While I was writing that, I read some other illness memoirs, but not a great deal, because I didn’t want to get in the position of thinking I had to include certain kinds of scenes because everyone else did. But then I wanted to read a great deal more. I had developed a craft interest in how other people write this sort of book.

I started reading as many illness memoirs as I could. And at the same time I started getting invited to a lot of association meetings and groups of ill people – especially cancer groups – and found that I was a magnet for people’s stories. I had written my own story and they wanted to tell me their stories. So it wasn’t formal research at first, but I was hearing a whole range of stories from a lot of different places. It seemed like an incredible opportunity. That was the personal moment.

The social moment was the early 90s, a time when illness really went public. In the 1980s, Audra Lorde wrote on this subject and mainly described silences around cancer. My mother had a mastectomy in 1964, and I remember the incredible sense of silence I felt in my inability to talk about it. That really began to change in the early 70s, and by the 90s it had really taken off, but in some ways it was still controversial to talk so publicly about illness. So it was a conjunction of a personal and public moment.

Andrew Benedict-Nelson: Since the book was pretty successful, I’m guessing you discovered communities to whom it was relevant that you hadn’t imaged when you were writing it.

Arthur Frank: Yes, I was terribly happy to hear from people outside of healthcare and outside of illness. It was taken up in education – I even got a book from someone who used it in writing about the experience of people in prisons. But within health care, it was well-received on “both sides” – patients and the people who offer medical service as well. I wrote the book just as much to them as I did for ill people, as a guide for listening and how people told their stories.

Andrew Benedict-Nelson: Can you tell me a bit more about the forces out in the world that you think reacted so strongly to the book?

Arthur Frank: I think it was a particular moment in which patients decided to take up responsibility for their identities in the same way that other groups had. I grew up during the Civil Rights Movement. Second Wave Feminism came in just as I was finishing my undergraduate years. The gay liberation movement was very big in the 1970s, and by the time The Wounded Storyteller came out the AIDS awareness movement had come out of that. There was a general sense of a much more pro-active role in being ill, and the old role of medical paternalism had broken down both within medicine and in terms of outside groups. It was a moment when various groups were developing the idea of identity politics, and The Wounded Storytellerprovided a locus for an identity politics of illness.

Andrew Benedict-Nelson: What specific tools do you think the book gave patients to help them do that?

Arthur Frank: The most basic thing it did was to gather together a large number of voices of people who were ill and provide a framework for interpreting the stories they were telling. The core of the book says that there are three basic ways of telling an illness story. The first is what I call the restitution story. That is the standard medical version of an illness, the version that healthcare wants people to tell. The story is, “I got sick, I went through treatment, it was more or less difficult, I was more or less successfully treated, and at the end I went back to a reasonably satisfactory version of the life I was living before I was ill.” The life before illness is not only restored, but it is restored very much through the agency of medicine. In this kind of story, medical workers are active participants and the patient is a patient in the etymological sense – they’re passive.

The second kind of story that I talked about is the chaos story. This is the one that medicine doesn’t want to talk about. You can usually tell when someone is living a chaos narrative because these are the rooms that the people providing care don’t want to go in. When I bring this up, there’s often an embarrassed laughter in the room, because practitioners know exactly what I’m talking about. These are patients who often have multiple problems. One problem seems to lead to two others, like the heads of a hydra – attempts to solve one problem opens more. Medical problems turn into social problems which turn into legal and economic problems. The narrator sees no solution on the horizon. People telling chaos narratives often use the present tense, because they cannot see a past or a future. They just have this litany of assaults that keep on happening. It’s a tremendously difficult thing.

Part of patients’ courage is re-building a world after illness has destroyed one’s sense of a future.

Clinicians often ask me how they should respond to the chaos narrative. I tell them the first thing they need to show patients is that the chaos won’t destroy them, because that is the fear of the person who is actually living this way and experiencing illness this way.

The third type is what I call the quest narrative. I was really influenced by Joseph Campbell in this, reading mythologies as stories of suffering, reading heroism not so much as a series of heroic actions but as a kind of heroic perseverance. The quest story is primarily about finding some sort of meaning. It acknowledges how awful illness really is. It doesn’t necessarily expect to have life before illness restored. It’s not grateful for being ill, but it’s grateful for some of the experiences that illness has brought. Most published illness narratives have some form of this quest narrative. Sometimes it’s political, other times it’s more personal or spiritual. Sometimes it can serve a role of community-building.

Ever since the book was published, my colleagues and I have been asking if there are other narratives than those three. I think there is at least one, but I had reasons for not writing about it at the time. I call it the “life is normal” narrative. I didn’t write about it then because it looked perilously like denial, and I very often thought that people were being coerced into denial, that it was the story people around them wanted to tell rather than their story. But some things have changed since then. Some of it is medical advances – you have several forms of cancer that are effectively chronic illness instead of critical illnesses now. When people live with these illnesses for several decades, there’s an absolute need to treat life as normal as possible.

Andrew Benedict-Nelson: Sure – I don’t think anyone in the midst of the AIDS crisis would have anticipated the relatively normal lives now lived by many people who are HIV positive in the United States.

Arthur Frank: Yes, that’s a poster example of this sort of thing. You have similar stories from many different groups. For women who have metastatic breast cancer, another 20 years of life is a real possibility. You have the extension of life of patients with cystic fibrosis. The way one narrates one’s life has changed as the result of changes in these conditions. These are all ideas I address in the forthcoming edition of the book.

Andrew Benedict-Nelson: I can understand how people with the restitution, chaos, and quest narratives would all be seeking venues in which to tell their stories. But the “life is normal” narrative would seem to resist that. How did you find sources to learn more about it?

Arthur Frank: A lot of it is just listening to people, but there is also the work done by my British colleagues Andrew Sparkes and Brett Smith, who have done a long-term study of people with major spinal cord injuries. Their original core population were elite British football players who had often suffered this at the peak of their athletic careers – they asked how they are adjusting to this. These men are at various stages of paraplegia, quadriplegia, or they’re walking and mobile but have severe back problems. This study made me really come to grips with the work that goes into trying to build a life that is as normal as possible despite this huge impairment.

Then once you start looking for something you find it everywhere.

Andrew Benedict-Nelson: Now that I think about it, there’s a whole genre of memoirs and fiction about what it means to live with disability, isn’t there?

Arthur Frank: That’s right. The Wounded Storyteller was not meant to address the problem of disability directly – my main interest was critical illness and to a lesser extent chronic illness. But the book was taken up by people with all sorts of disability, and they really pushed me to consider the applicability of these three narratives to that situation.

The big difference is that the basic model for The Wounded Storyteller was people who were living a healthy life until something happened – what my colleague Mike Bury calls “biographical disruption.” But many disabled people are born with their disabilities – it’s simply how they are. That makes for a very different narrative trajectory from someone who has a “life before” and “life after.” So working with disabled people made me think much more about lives where illness has become comparatively normal.

Andrew Benedict-Nelson: What else have you discovered between the first and second editions of the book?

Arthur Frank: It’s a little complicated, but the other main thing I’ve added is a discussion of different modes of narration or ways of telling a story. I am particularly interested in what my Swedish colleague Lars-Christer Hyden and I call “broken narratives,” which refers to people who may have speech impairments or mental impairments that prevent them from telling the kind of stories with a beginning, middle, and end that I studied in The Wounded Storyteller. How do we tell stories in various conditions of physiological or emotional brokenness that make cohesive narratives difficult to assemble?

Another issue is what I call “borrowed narratives.” There are some people who lack the resources to tell the story of their illness themselves, so they will appropriate another story and tell it with a sort of imaginative identification. This is particularly true with children’s stories – I draw heavily on the work of my colleague in anthropology, Cheryl Mattingly, who has written about the ways in which children “indigenize” mass culture stories in order to tell their own illness stories.

I’m also taking up two big issues that, for good reasons, I did not take up when I wrote the original book. Those are hope and courage. What does it really mean to tell ill people that they are courageous? The ill people will often reply, “Well, I didn’t really have a choice.” But I think the praise is still warranted. I try to work out a framework in which we can recognize the specific dimensions of courage that are involved in living with illness.

Andrew Benedict-Nelson: Right – there’s courage, but it’s not necessarily in the form that people expect.

The point of view is discovered in the act of storytelling. That’s very difficult and very courageous.

Arthur Frank: It takes me back to the basic problem of narrating. Part of the courage of patients is  re-building a world after illness has destroyed one’s sense of a future. If you’ve lost your future, you’ve in many ways lost your point of view, and we all know that storytelling begins with a point of view. It’s a huge problem – how do you tell a story in the absence of a coherent point of view? The story often has to discover the point of view itself. The point of view is discovered in the act of storytelling. That’s very difficult and very courageous.

Andrew Benedict-Nelson: What else do you think has changed in the world of patients since you wrote the first edition of The Wounded Storyteller?

Arthur Frank: Now you get into all the things that were too big for me to write about in the new edition.

One change that was way too big is the avalanche of social media and the Internet more generally. The Wounded Storyteller was written in 1993 and 1994 – I don’t think I had e-mail in my office until ’96 or ’97. The Internet has created a huge shift in who tells what kinds of illness stories to what audiences. You had the rise of patient blogs and online support groups. And what happens on the Internet makes its way back over into print journalism. I’m thinking in particular of the “Life, Interrupted” blog that theNew York Times has run for the past couple of years. These are opportunities for storytelling that just weren’t there before.

Now one of the casualties of all this is that, at least where I live, the face-to-face support groups that used to get together have pretty much disappeared. Younger patients in particular are just going online now. I remember meeting a very articulate woman in the late 90s who had a series of head and neck cancers. I asked her if she was going to write a book, but she said she was more interested in starting a website, and she did. I think that writing books may no longer be the primary way that people think about telling others about the story of their illness.

Andrew Benedict-Nelson: I think that particularly makes sense in the context of patienthood. I mean, I’m guessing that most patients who write books didn’t do so because they had always wanted to be authors when they grew up. They were often doing it to advance a particular point of view or rally people around a cause. Well, if you have that explicit goal in mind, some form of immediate, interactive online storytelling may be much more effective than shopping a manuscript around to publishers for a few years.

Arthur Frank: Absolutely. It’s also a heck of a lot safer. Books involve a tremendous front-end investment for something that may never get outside of your desk. I know plenty of people who have written books about their illness experiences that never went anywhere. Whereas if you have a blog you tend to see some sort of audience right away. You get a sense of connection right away, and that’s one of the main reasons people want to tell these kinds of stories – to connect with others. My memoir took about two years to get published. A lot of patients don’t have that long to wait.

Of course, if you publish a book today, you’re expected to have a Web presence anyway, so it may be that the two strategies are complementary.

Another big difference is changes in medicine and awareness among medical practitioners. I’ve had wonderful, collegial relationships with people like Rita Charon at Columbia, who has really been the leader behind “narrative medicine.” Two years ago I worked on a project with the Canadian organization Associated Medical Services trying to bring together medical educators who wanted to do the dual work of helping physicians tell their own stories, but also helping them to hear patients’ stories as something separate from the patients’ histories. That’s probably the best one-line summary of what narrative medicine is also about. What Rita and her colleagues have really been trying to do is to hook up medical awareness with the work that I’ve been doing on patient narratives so that physicians are aware of the extraordinary difference between a well-taken medical history and the life that this person is living.

Cancer activism and other disease-related activitsm have been another major change. Here in Calgary in the fall, there must be two or three major fundraising-related urban athletic events every weekend – runs, walks, bikes – combinations of runs, walks, and bikes – you name it. They’re raising money for research groups and support groups or just creating a profile for various illnesses. This new civic athletic activism ties in to what my colleague Samantha King of Queens University in Ontario talks about as a sort of targeted corporate philanthropy. The other side of these civic awareness events is that they’re generally sponsored or held under the logo of various corporations. King has done an extraordinary job of tracing out the messages of these various events and the way they connect with the interests of the sponsors, which can be considerable.

I think of these urban events as machines for generating particular forms of narrative. They are teaching people how to tell stories. They are setting in place a preferred narrative. This whole idea of “the cure” as something that is supposedly out there, just beyond the finish line – it’s sort of like the restitution narrative on steroids.

Andrew Benedict-Nelson: I’ve wondered about this. I don’t know anyone with breast cancer well enough to ask how they feel about all those pink ribbons, but I have had some involvement with events for survivors of suicide. In that environment, the organizing principle isn’t “the cure,” but “prevention” – it’s a banner everyone can rally under. But I’ve often wondered about how the people who have actually suffered from these problems connect those banners to their real, lived experience.

There is an extraordinary difference between a well-taken medical history and the life that a person is living.

And I can see how it might be difficult to your work. Here you are trying to figure out individual people’s stories of their illnesses as sufficient in themselves, and suddenly everyone is telling you this narrative that came from someplace else.

Arthur Frank: I want to resist that characterization of my work a little bit, though. I’m pretty insistent that people don’t make up their own stories. Stories are always hooked in to these larger narratives, the kind of “narrative resources” that people do or do not have available. Part of what I was trying to do in The Wounded Storyteller was expand that pool of narrative resources. Some of the most moving responses I’ve gotten to the book were people who said to me, “I realized I had been telling this kind of story about my illness; I never realized this other kind of story might also be available to me.” And while we may think we only tell our stories for individual purposes, putting a story into play is a powerful act. It doesn’t affect only ourselves. It ripples outward constantly. That’s why I think tying individuals’ stories into corporate interests is a little scary.

Andrew Benedict-Nelson: I think there is another problem with these kinds of collective narratives that is there even if you assume that the entities behind these events are completely benign.They run the risk of being a collective version of that relative who keeps telling you you’re going to fight through it and get better, even if there’s a chance you won’t.

Arthur Frank: Exactly. I remember relatives and friends who were exactly like that – the relentless optimism. You know, if they called it “Run for Progressive Advancements in Treatment,” that’s something I could really get behind. Unfortunately, with cancer, that’s the main thing that you get. You get fewer side effects. You get better control. You get better targeted treatments. But you don’t get a cure.

Andrew Benedict-Nelson: This conflict seems like it could point the way toward some useful ideas for the Lab. As you know, we’re going to be working on the problem of how people will handle information about their future health and the ways in which that might become a part of their identity long before they become patients. Now for the specific situation of cancer, everything I’ve read suggests that the future trend is not some sort of magic bullet, but rather long-term, personalized treatments that make various cancers into livable, chronic conditions. So the “cure” narrative may not just be inadequate for the people who face imminent death – it may also be inadequate to us as a society figuring out how to live with cancer.

So let’s say that every person in the Western world has cheap, reliable access to the contents of their genome and other information that could tell them what diseases they may face. It would seem like one source for learning how to live with this information might be this evolution in thinking about cancer. It might be indicative of the kind of narrative work we’ll need to do as a society.

Arthur Frank: This is a deep, dark question. My friend Alice Wexler wrote a book called Mapping Fate: A Memoir of Family, Risk, and Genetic Research, which is a fascinating story of her family and genetic disease and the effects of this kind of information. The question really goes back to the late 1980s and the first really reliable genetic marker of disease we had, which was for Huntington’s chorea. There were a lot of ethical questions surrounding how you made this sort of information available.

To me, the issues are fundamentally the same. You’re suggesting the advantages of using this kind of information to take certain preventative measures or to re-organize your life in a certain way. To me, there are also certain disadvantages depending on the form of this potential disease and this potential information.

How much do we really want to know? It really gets at some different ways of thinking about how to live a human life. If someone told me there was a really good and reliable fortune teller down the block, and for $25 this person could tell me when and where I would die, I don’t think I would want to go. I think I would rather live my life and let that happen.

So if we do have this level of information, we need to think about the fact that it could come in two forms. It could come in the form we now associate with BRCA genes – you can tell the woman she has a gene that may pre-dispose her to breast cancer, but in the context of the overall chances that she’ll get breast cancer in the course of her life, that’s actually not very useful information. The risk factor just doesn’t increase that much with a gene of such low penetrance.

At the opposite end of the spectrum, you have something like the Huntington’s gene, which has just about the highest rate of penetrance there is. You end up with this sort of spreadsheet of everything from slightly elevated but still relatively insignificant risks to potentially serious and harmful prognostications. What are people going to actually do with that? The information itself is not a narrative. People will seek out a narrative form. And what will be the guidance and support for putting all of these arrays of information into narratives that fit with the particular biographical track that that individual is on? It’s an enormous task.

Andrew Benedict-Nelson: Earlier you said that the main contribution of narrative medicine is to help physicians distinguish between a patient’s history and a patient’s story. It sounds like we need some sort of complementary discipline that insists that a patient’s potential disease profile is not the same as his or her future story.

Arthur Frank: Right, it’s absolutely not. Not in the least.

The narrative also depends heavily on the kind of health care access that comes with this information. You’re talking about information that could seriously re-jigg career trajectories, for instance. This is a serious act of letting the genie out of the bottle, and it’s not going to come out of the bottle all at once. The quality of the information will vary over two- and three- and five-year increments as the technology improves.

If the system is geared primarily toward illness rescue, you’re basically just dumping data on people.

You know, it’s more like a chronicle than a story, as the historian Hayden White might say. A chronicle just measures events in each year without any sense of causality. In a story, events are causally connected. They have a narrative arc. A list of a patient’s future health risks doesn’t have that. People would need support translating the chronicle into a usable story that would either help them make useful decisions or even decide that there is not much there to cause them to live their lives differently.

Andrew Benedict-Nelson: You said that you’ve thought of The Wounded Storyteller as a resource to help people more effectively tell the stories of their own illness. Let’s say for the sake of argument that the availability of this kind of information in the future is inevitable. What do you see as some of the narrative resources that would help people cope with it?

Arthur Frank: Well, one of the things you’re going to have to think about is how this sort of information fits in to people’s interaction with health care systems. It may mean something very different in the United States from what it means in Canada from what it means in England. You have to ask questions about the continuity of care and the quality of primary care. So many Americans really don’t have a health care system – they only have an illness rescue system. If the system is geared primarily toward illness rescue, you’re basically just dumping data on people. You need continuity of care and continuity of relationships so people can really think about what this information means in the context of their lives.

In the United States, many people do not have effective primary care, and those who do still have significant turnover in their primary care doctors. In Canada we have universal third-party insurance, but even relatively well-informed and well-connected people are likely to change their primary doctor every three to five years. That’s not a very long time to get to know someone in the context of their entire life. We may need to think about a whole new class of genetic counselors who would be trained to do this sort of work. We may need to think about the ways in which they would be integrated into the health care system. When you think about dumping this kind of information into the relative chaos of primary care as it now exists, I think it could have some very serious consequences.

Andrew Benedict-Nelson: Even without all those systemic challenges, it feels like this sort of health information creates a huge demand for new ways of processing our own identities.

Arthur Frank: That is absolutely what we should be talking about. To do a DNA swab and say your printout will arrive in the mail in six weeks is not adequate to this enormous task.

Andrew Benedict-Nelson: In an earlier interview on this topic, the bioethicist Dan O’Connor told me that while this is a very interesting challenge, he’s not sure that it actually hooks up to the concept of patienthood in a meaningful way – if anything, this health information would give people new ways of avoiding patienthood, he said. You have a somewhat different perspective on patients and their stories. How do you think the experience of patienthood might look in a world transformed by this kind of information?

Arthur Frank: I have to side with your colleague – I’m not sure they’re really connected. It’s a whole other set of issues. Margaret Atwood writes about how the idea of utopia is always connected with the idea of dystopia. Frankly, I’m not sure what kind of people a world with this information would be utopic for or dystopic for. I’m not sure that I would lead a better life if I got my printout and it said I was the winner of the genetic lottery. I’m not sure that that would make me a better, more empathic human being.

Andrew Benedict-Nelson: And you could still always get hit by a truck.

Arthur Frank: By the same token, I don’t know if I’m a better human being if someone says, “Bad luck old boy, as good as you feel today, your markers for pancreatic cancer are coming up in three years and it’s time to start the clock.” That would not help me to live my life in a better way either. How will this information help us to live better lives? That’s really an ethical question, not a medical question.

The point is that someone is going to sell this information. Someone is going to market it or distribute it. It’s important to approach it from a political-economic point of view and ask what institutional interests would benefit from having this information about each person, and will it be used to constrain our lives in various ways? In that sense, you move from the realm of medicine to the realm of political economy.

Andrew Benedict-Nelson: And unavoidably so. But leaving the political economic questions aside, I want to know more about narrative. Let’s say that I somehow know with absolute certainly that on the day I turn 55 I will be stricken with pancreatic cancer. Would that sort of knowledge mean that I would have a different narrative experience of illness than the kind you’ve described in your work?

Arthur Frank: I think part of what that does is to turn the rest of your life into virtual illness. I had this curious experience right before I wrote The Wounded Storyteller. They found some nodes on my lungs and diaphragm, and they thought I was having a reoccurrence of cancer. It was actually kind of useful for me that the Canadian system moves as slow as it does, because I had about a month to think about things before they did a rather complicated thoracic biopsy and found out that I had something else.

How will this information help us to live better lives? That’s really an ethical question, not a medical question.

In those weeks, I had the experience of being virtually ill. I felt fine, I felt like I was in the peak of health. But I had seen the CT scans. I believed they were mine – I didn’t tell myself they had been mixed up in the radiology lab. I believed I really did have these things that weren’t supposed to be in my body. That’s virtual illness – it’s the incongruity between all the feedback your body is giving you about how you feel and the fairly indisputable medical information you’re getting about what’s going on in there.

The most prevalent virtual illness of our time is HIV infection. The person may have some initial physical reactions, but mainly they’re in a period of waiting when they know that there is something bad, that it could have long-term implications, and yet they feel fine.

Andrew Benedict-Nelson: But it has real consequences. There’s a documented phenomenon called “serosorting” – apparently over time, gay men of San Francisco have ended up primarily having sex with other men who were of the same HIV status as they were. You could imagine other kinds of social consequences of different people carrying around these different virtual illnesses throughout their lives. This information becomes woven into the way people live their lives.

Arthur Frank: In some ways, Andrew, there’s an old-fashioned name for what you’re talking about: mortality. At the same time as these sorts of discussions are happening, we have certified experts who are proclaiming the potential end to mortality – it’s called transhumanism. But I put myself pretty firmly in the mortality camp. I would line up with some of my colleagues who are doing Christian bioethics and say that there really are limits to what it is good for us to be able to know or even to control. If this new information is helping to do things like design more targeted chemotherapy – well, who could be against that? If it gave you information about things like the response rates to certain drugs, it would be irresponsible not to pursue that on a cost-saving basis alone.

But there is a huge difference between that sort of thing and telling a patient, “Well, we’ve looked at your genes and we don’t think this type of treatment is worth trying for you” – particularly in the more primitive stages of an early roll-out.

Andrew Benedict-Nelson: I have to think there would be responsible ways of processing that sort of information, though. I mean, today I know what an actuarial table is. I know it would be irresponsible and unethical to apply an actuarial table to an individual’s care. But they’re essential to planning things like entitlement programs. I wonder if there is some future cultural form we will invent that could help us process this information without doing people harm.

Arthur Frank: But with respect to actuarial tables, we still haven’t resolved all of the ethical issues that have come out of that. Sure, it’s very handy if you’re setting up a social security system and need to figure out how much money you’ll pay at a future date. But those tables are also sometimes used to prevent individuals from getting certain forms of insurance because of their individual risk profiles. One could make a similar argument about other measures like IQ – it was originally designed for populations, but was then used quite invidiously to screen and to discriminate. As a person who had cancer in early middle age – which can now be treated as a pre-existing condition in certain situations – I’m very sensitive to the ways in which people use this sort of information.

Andrew Benedict-Nelson: The big takeaway for me is that this kind of information is never going to show up as an app on my phone that I can simply “use.” It’s always going to require a sort of visceral processing.

Arthur Frank: And cognitive processing too. Even if you have training in statistics and epidemiology, the concepts of gene penetrance and risk for a specific individual can be very difficult. So for most people, to tell them this information without any sort of context or ongoing relationship would be irresponsible.

Andrew Benedict-Nelson: The point I hear is that it might not even be comprehensible.

Arthur Frank: What I’m really afraid of is that the kind of information you’re talking about could emerge as a corporate product before these issues of responsibility have even been worked out. Individuals might find themselves under tremendous pressure to have that product imposed upon them. The pressure to make this a part of everyone’s health record could be overriding before we have solved the ethical, psychological, and spiritual problems that might come with it.