What’s the Story with Life Changing Illness?
“Sometimes when I ask people to tell me their story they tell me about their achievements, what they have acquired or built over a lifetime. So many of us do not know our own story. A story about who we are, not what we have done. About what we have faced to build what we have built, what we have drawn upon and risked to do it, what we have felt, thought, feared, and discovered through the events of our lives. The real story that belongs to us alone. All real stories are true.” – Rachel Naomi Remen
In this conversation, I’m speaking with Mary-Kate Kelly about the stories that surround life-changing illness: the ones we inherit, the ones imposed on us, and the ones we slowly (sometimes painfully) find a way to tell for ourselves. It is an exploration of language, agency, and the deeply human need to tell our real story: the one that belongs to us alone.
Jen: Hi Mary-Kate. So we’re here to talk about the stories and narratives that surround life changing illness, the language and everything that comes with that. I wonder if you could bring us in on the books you’ve recommended for this topic?
Mary-Kate: There were so many books I could have recommended on this topic, I had to really cherry pick my favourites. The first one is Kitchen Table Wisdom by Rachel Naomi Remen. That is a book I’ve had for over twenty years. It’s a beautiful book.
Jen: It really is a beautiful book.
Mary-Kate: The second book is The Undying by Anne Boyer. I love that book. The third is The Wounded Storyteller by Arthur W Frank.
Jen: I really appreciated these recommendations. I’m excited to speak with you about them. Could you share a little bit about your background and what brings you to these ideas?
Mary-Kate: Yes. So, I have a lot of experience working with people impacted by cancer, whether that’s their own diagnosis or the diagnosis of someone they love, whether they’re actively dying or living after their cancer treatment is finished. I also work with other life changing illnesses like Multiple Sclerosis, Parkinson’s and Motor Neurone Disease. I like the term ‘life changing illness’, because certain illnesses that other people might not consider to be “serious” can be life changing. So we could be talking about chronic illness, chronic fatigue, chronic pain. To me that captures a big amount of experience. Some things are visible, some things are hidden, but we have a lot of stories, a lot of story-telling around illness and health – and those three books touch on some of the elements.
Jen:. All three of these books are grounded in narrative practice – the idea of storytelling, and how the stories we tell about our experience involve a process of becoming. My therapy practice is called Conscious Chapter, so of course this concept of telling stories, constructing and deconstructing narratives, becoming an author of your own life is a big part of how I work. There were a lot of things in these books that really spoke to me, some of which really aligned with my way of working and some of which I found challenging, in a helpful way.
Mary-Kate: What were the things that stood out for you, Jen?
Jen: Well, some of the resonance was around the idea of suffering an inevitable aspect of the human condition, a given that is there for all of us. There’s also the idea of meaning-making as a given. Those aspects align with my existential way of working. There’s something there for me, too, in that storytelling piece: what are the stories we’re telling? How are we relating to our experience? How are we integrating this experience into the wider stories of our lives? It also made me think about the disruptive force of suffering, the disruptive force of illness in this case – how that can disrupt a narrative.
Mary-Kate: That’s an interesting one, too. There’s often this presupposition that illness has come along and disrupted someone’s healthy state, but that’s not everybody’s experience. Some people have lived with illness or health differences or challenges their whole lives, right from childhood. So it could be that a life changing illness is just another thing – a new line has been thrown into the mix.
Jen: Right, that’s true.
Mary-Kate: It’s that power of the story, you know? Who is telling the story? When I first started working with people impacted by cancer in the late 90s, it was wall to wall silence. People were still talking about ‘the big C’, the kind of euphemistic avoidance that you’ll still see in some obituaries, you know, “a short illness”. There’s so much power that the word cancer is given. There’s a wonderful thick book that you’ll probably never read, unless you’re a complete nerd like me, called The Emperor of all Maladies. It’s a full history of cancer, written by a guy called Siddhartha Mukherjee. It’s just amazing. He calls cancer a cultural touchstone as an illness, because it’s one word, but it’s talking about over 120 different illnesses. Before we had a cure for tuberculosis, in the 1920s, there were serious papers talking about the “tuberculosis prone personality”. As soon as a medical treatment came around, some other illness had to occupy this cultural place of the “mystery illness” – the illness that contains all of our existential dread. Cancer is perfect because it’s not one thing, but we treat it as if it is. So now we’ve gone from the silence, the big C, where we can’t even say the word, to an awful lot of noise. There’s a lot of talk about cancer, but there are questions we could ask about whether it’s useful, and who’s telling the story, and what’s their agenda? A lot of my work with clients will be to get them to tell what actually happened. They may not have actually told that story. When did they first go to the doctor? What happened? What was that experience like for them? To actually start to tell that story from their experience.
Jen: Right, to bring it back to their own perspective.
Mary-Kate: Yes, and then to check: is it their story they’re telling? Or are they telling the story that they’ve been told?
Jen: That strikes me as so important because, as you’ve said, there is such a noise around cancer stories. There can be a temptation to assume when we hear the word cancer that we know the story that someone is telling. But of course, like anything else, until we come with real curiosity for that person’s particular experience, we don’t really know. A lot can get lost in that assumption, that projection of a shared cultural narrative on to an individual person.
Mary-Kate: Right. There’s a vast difference between somebody’s experience of, let’s say, breast cancer, bowel cancer, skin cancer, you know, I could list them all, and then that individual. Are they parents? Are they young? Are they old? What’s their socio-economic situation? What’s their background? It’s so unique, but the cultural noise doesn’t allow for uniqueness. It used to be, before the internet, when all there were leaflets, that every leaflet had a smiling person. Try to find an image of someone going through treatment where they’re not smiling – it’s quite difficult! It’s the same on websites now. There’s a constant push, certainly in cancer culture, of positivity, as though the individual is somehow responsible for the illness. That’s a thread that carries across all illnesses. There’s this sort of underground narrative, which Susan Sontag, for example, would talk about. We all have this sort of dual citizenship in the kingdom of the well and the kingdom of the sick. Nobody wants to use that passport, but sooner or later we’re going to spend time there. Yet there’s this judgement, from people from the kingdom of the well, going , well, what did you do to cause that? That is powerful, because now it’s down to the individual –it’s their fault, whatever it was that happened to them, especially if we don’t know why it happened. It’s their responsibility to get well or stay well. It’s really isolating.
Jen: Absolutely. There are two things that really stand out to me from what you’ve just shared. One is how that narrative really disconnects us all from our existential condition. Disability is a minority group that all of us will belong to at some point. The state of being ill is a state that all of us will inhabit. Yet there’s this distancing narrative, this dichotomy we draw between the ill and the well, as if those are distinct categories. The second thing that comes up for me here is the commodification of wellness and how that sits with the narrative you’ve mentioned of individual responsibility. We can see this in particular if we look at something like the American healthcare system, where there is such a burden on the individual person to pay, to literally pay, financially, when they become ill. We can notice how this trickles into wellness culture. That individualisation of responsibility is so present in the way we approach doing all the “right” things. Are you eating your greens? Are you lifting weights? I’m not suggesting that that we abandon all efforts to take care of ourselves, but there is this insidious notion that if we do everything right we can somehow escape the condition of being a person – that citizenship in the kingdom of the sick.
Mary-Kate: This is one of the reason’s I recommended Anne Boyer’s book, The Undying: for her rage. I just love her rage. She’s living in America. She speaks about her rage at dealing with the American healthcare system, how vulnerable she is and how there is no place for her. Yet the power of her language is so poetic. She defines herself in this book. She doesn’t allow the culture to define her. She tells her own story. In a lot of my therapeutic work with people, this is what I’m trying to do: to help them tell their story, to find their story. If the positivity idea is useful, if that’s what’s helpful for a person, then that’s what we’re going to craft – but at least it’s theirs. It’s about getting a definition of positivity that actually fits with their experience. Then at least it’s a real story, that’s open to change and rewriting and re-editing – because there is no “the end” to an illness story.
Jen: This reminds me of that beautiful passage where Rachel Naomi Remen writes about what it means to tell a real story. Very often, when we ask people to tell us their story, we get a story about their achievements, or milestones in life. She makes the point that so many of us do not know our own story. There is a process of telling a story about what we have faced, and what we have built through what we have faced, what we have feared and felt. That is the real story, which belongs to each of us alone. She also says that all real stories are true. There’s something powerful about that, right?
Mary-Kate: Right. We can tell when we’re listening to a very true story. Storytelling is such an ancient practise. Humans, I suspect, as long as we’ve had language, maybe even before we had what we could recognise as language, we’ve been engaged in story-making and story-telling. If I learn something, or I hear something, and I want to share it with you, I’m going to do it through story – whether that’s in conversation like you and I are doing now, or through a song. It doesn’t have to be written down. All our creative acts are generally about telling a story, because that’s in a way how I suspect we try to process experience and make some kind of coherence, even if the meaning that we’re making is unfinished. There are lots of ways to tell stories.
Jen: I can relate to that on quite a personal level. Growing up, I wanted to be a writer. I loved stories. I’ve always loved stories. I still do. There’s a sense in which working as a psychotherapist is very much a way of working with lived stories, so that’s still very present to me. There was a time, though, where I would get very distressed about losing some element of my identity if I wasn’t writing. I actually have a tattoo between my shoulder blades which says “this is the book”. For me, it’s a call back to the body, the lived story – a reminder that there are many ways to be an author. It feels like a supportive hand between my shoulders, having those words there.
Mary-Kate: Well there’s another lovely example of tattooing as storytelling. In many indigenous cultures, and I’m sure in Irish culture too, it’s just gone beyond memory – tattooing is a form of story making on our body. There can be great intention and ritual there. It can be such a rich storytelling medium.
Jen: Funnily enough, the other tattoo on my back connects with the theme of this conversation. I got it not long after having surgery. There was something there for me about reclamation. Having experienced this pain in my body that was not chosen, and feeling shouldered out of my own authorship in some way, this was my way of reconnecting with the body through a pain, and a marking, that I had chosen.
Mary-Kate: A story that you were creating.
Jen: Exactly.
Mary-Kate: The power in that! It’s available to all of us. What is the story that is mine to tell? In Arthur Frank, I love that he talks about narrative archetypes.
Jen: Me too. It’s helpful to have that lens for noticing some of the common narratives that come up around illness.
Mary-Kate: He talks about the restitution narrative: I’m sick and now I’m well.
Jen: That’s really the dominant social narrative here in the West.
Mary-Kate: Yes. Then there’s the quest narrative: I’ve been sick but I’ve gone on a valuable journey and got a valuable lesson. The West loves that one too. Then there’s the chaos narrative, which is messy and unresolved and uncertain. We don’t so much like that one. Yet for most people, especially after treatment finishes, or, if it’s cancer, and they’re being monitored and surveilled for years, or if somebody is living with MS and they’re not quite sure what the prognosis is, what shape things are going to take – or any range of other life changing illnesses, there’s a chaotic quality to that. There’s an unpredictability. Many narratives don’t really hold that, so people end up feeling that their experience doesn’t fit with the story. That can lead to a feeling that they must be wrong – not that the story is wrong. There’s a loss of trust in their own experience. That’s very difficult.
Jen: Right. In psychotherapy, a lot of the work that we do is supporting people in developing a coherent story. There’s something about wholeness and integration that comes from taking these fragmented, chaotic, sometimes unspeakable pieces of our lives and finding a way to reintegrate that. I think quite a bit about the linguistic link between integration and integrity, in the sense of wholeness. I’m taking these fragmented pieces and weaving them back into something that has this sense of integrity, this sense of coherence to the story that helps me feel whole. There’s a bit of a juxtaposition there, because coherence doesn’t mean that it can’t hold the chaos – it has to be able to hold the chaos.
Mary-Kate: That’s the challenge with illness. There’s such a value in what you’ve said and yet, with illness and health it’s almost more like fragments on the sea. If change is going on, if things are unpredictable, it’s actually a skill of, well how do I now navigate sometimes not being whole? Do you know what I mean?
Jen: I do. One of the things that I liked about The Wounded Storyteller, and this is the literary nerd coming out in me now, but I like that it situates itself in a Postmodern context, because there is space for that –for things to be chaotic and messy and unresolved and still have an internal coherence. It’s like what we were saying about the real story as true. There’s an Audre Lorde quote that I love, which came up, I think, in all of these books, about how the development of a coherent self-story is a way of making myself available to myself.
Mary-Kate: In a way I think that’s probably the “whole” piece, as opposed to physical wholeness, because that may not be available anymore, depending on the situation.
Jen: Exactly.
Mary-Kate: What you’re talking about connects with what I’ve found in the research around language and life changing illness. Things that stood out were themes of agency and identity. Am I the person telling the story? Can I create the story? Is it mine? Who am I now that this has happened. There’s meaning-making in that. We have to wonder, too, is it sustainable? Are the metaphors or words that I’m using sustainable enough that they will adapt in the face of things being ok, or things suddenly not being ok. There’s a lot written about trauma, but there are few traumas quite like medical trauma. Ordinarily when we’re traumatised by a situation, we don’t have to repeatedly return to that place. When people are medically traumatised, through surgery, radiotherapy, or any other level of intervention, chemical or otherwise, to have to continually return to the medical system for help, while traumatised, is a very particular experience. How are people to navigate that when there aren’t really that many stories out there about how difficult that can be, how lonely that can be, how much loss of dignity there can be, and yet, how many good relationships can come out of it. The hospital settings can be quite stark and cold and absent of stories.
Jen: I thought that was a real strength of Anne Boyer’s book. She really makes visible the violence that is often involved in treatment. This connects with how, while the restitution narrative can be useful for some people, it is also the narrative that is often imposed. You go to the hospital and they make you well. We go to these places to heal. That narrative doesn’t sit easily with how traumatising and violent treatment can be. I liked how that patient perspective sat alongside Kitchen Table Wisdom. As a medical doctor, Rachel Naomi Remen really offers us something in terms of how we can address the ways we are showing up as healers, as people who work with people who are ill – be that doctors, therapists, whoever that might be, by bringing story back into the process.
Mary-Kate: Yeah, and a really powerful things that Rachel Naomi Remen does is she also shares her story of illness. So she’s not on “the other side”. She’s not telling a story from a distance. She’s in there. You know, I’m so grateful that we have access to medical systems. It’s such a privilege. There are no two ways about it. And yet, someone, I can’t quite remember who, described the treatments for cancer as slash, poison and burn. There’s an intrinsic violence to treatments that’s unavoidable and yet they are being done to help the person. That’s a paradox at the centre of a lot of medical treatment. If the restitution narratives or the quest narratives sit well with people, then that’s a useful story. I’m not going to be the person to assess whether or not the story is useful. It’s working together with the person to see, well, how is this sitting with you? There might be other people, for example family members, who are feeling very attached to the restitution narrative, but actually the person themself is feeling a bit chaotic, because they’re having to go for a check-up and the fear is starting to rise. Everybody else thinks it’s over now. It might be over for them. They think the story is done. Their chapter is finished. For the person still in the middle of it, it’s not over. They’re still in the middle of this story that you’re now exhausted with and you can walk away from, but they can’t. Particularly with things like chronic pain or chronic fatigue, if you’re left with neuropathy or side effects because of the treatment, you’re in a complex reality where you’ve been left permanently changed by a treatment that was given to save your life. How do we craft a story around that? What do I make of that?
Jen: I think that really comes back to this idea of what underlies the story – the body as a lived story. The body is there first. Particularly around that chaotic element of experience, it almost surpasses speech. There’s something quite literally unspeakable about that primary felt experience. There’s a sense of, well, how do I turn that into narrative? How do I turn that into a story? In a sense we can never quite reach it. I liked the handling of that in The Wounded Storyteller. It talked about how even the chaos story is a step removed from the chaos. When you’re in the chaos itself, there is something unspeakable, something primal and bodily that doesn’t make it into speech. We can though, with distance, go back to tell the story and make some sense of the experience.
Mary-Kate: Right, that’s how we process the experience.
Jen: It’s not always accessible in the moment.
Mary-Kate: No, absolutely, not in the moment. If somebody is experiencing a lot of pain, they’re not going to be telling a story in that moment. There’s also something about how we are in a physical body, but we’re not in a culture that is particularly comfortable with that reality. That’s part of the existential stuff: these bodies are mortal. Do we spend a lot of time with that? Probably not, in our culture. Illness is such a loud reminder that we are in fragile, time-limited bodies that don’t always do what we would like them to do. I sometimes say to clients that the West treats our body like it’s a trolley to transport our brain around on. It’s so much more than that. It’s such a rich way to experience the world. Trauma-informed work tells us a lot about this. There are so many fields that speak to the rich experience that the body gives us access to. Then what are the stories we can create, at least that are ours. If it’s an illness that’s happening to me, do I even just get to tell that story, about what it was like for this to happen to me.
Jen: Right, it’s a way of finding the agency that is available to me. Coming back again to that existential piece: there are so many factors in life that are outside of our control. Illness, in particular, really holds up a mirror to the limits of our agency. Things happen to us that we would not have chosen for ourselves, that are totally outside of our control. Can I access the pockets of agency that are available to me in that? In The Wounded Storyteller, Arthur Frank asks: what does it mean to take a place in a story that has been resisted? Can I take my place in the story and find the agency in stepping into what’s mine?
Mary-Kate: Then the difficulty is, there are currents working against that. So before this experience came along, if there was a before, which we can’t assume, but if people were healthy and then became ill – did this person feel agency in their life anyway? Then, as people are turned into patients – patient is such passive identity. I love the origins of words. Patient can kind of communicate, you know, “I am patiently waiting”, but patient has nothing to do with patience. It’s actually a Greek word, which is “to suffer the treatment”. It’s quite an acknowledgement that treatment might be difficult. It’s a true word, but it’s very passive. Plus, then the medical system almost requires or quite likes passive patients. It makes the job easier. It implies that this is a passive receiver experience, not an active collaborator experience, certainly not in many countries. So again, how does a person access their agency when they have been subjected to treatments that have required them to sit still, to do as they’re told, to lie prone, to submit to this treatment, which, again, is being done for all the right reasons, but how does the agency come back in? So the storytelling is like a nourishment for that agency, a way of trying to coax agency back into the light again, asking: what do you think? What did you make of that? What was that like for you? To try to slowly grow that back in again.
Jen: It’s very true and very striking what you say that we can’t assume that people were in contact with their agency prior to being ill, if there was a prior to being ill. For some people, the opposite may be true. Like any confronting experience, illness can be a catalyst to connecting with my agency. Maybe I was more passive before and suddenly having an experience where there is a death confrontation or a life changing illness actually brings me into that state of beginning to reconnect with the agency that is available to me.
Mary-Kate: Yes, and at the same time we have to be very careful that we don’t then turn illness into some sort of “divine blessing”.
Jen: I was just thinking the same thing! We have to be careful not to valorise it.
Mary-Kate: Right. Language can be tricky and slippery.
Jen: Yes, and always imperfect.
Mary-Kate: There’s a real tension in acknowledging that that may be the case for some people, without falling into neat parables or saccharine observations, which are a great way to silence people. This reminds me of another great book, called ‘The Language of Illness’, by an Irish man, Fergus Shanahan. He says “don’t be a minimiser, a philosopher, a storyteller, or a peddler of remedies or received wisdom”. If that could be up on a billboard somewhere, that would be great.
Jen: That phrasing, “don’t be a peddler of remedies or received wisdom” is incredible. I might need to awkwardly sidestep the storyteller and philosopher part..!
Mary-Kate: Well, philosophy is a powerful field, but some people can reduce it to trite little sayings, like “oh, c’est la vie”! That can be true, but it can also be another way to shut people up and stop them from telling their stories. It puts out a message: we don’t need to say anymore. I might be frightened by what you’re going through, or bored by what you’re going through, so I need to put a little full stop at the end of this story – but then I leave you alone with what’s happening. The point of not being a storyteller is that we can’t tell the story of somebody else’s illness. That is something that they have to do. Fergus Shanahan also says “for all of its universality, illness is an intensely personal and lonely business”. There’s such a truth to that. We have this experience in common of life changing illness, but it doesn’t get more personal than when it happens to us.
Jen: Absolutely. We’re coming to the end of our conversation now. Are there any last thoughts that you’d like to share?
Mary-Kate: I suppose overall, the interesting question for me is this: Is the story that’s being told about the disease or about the person? Is it a person focus, or is it an illness focus? People are so much more than their illness, no matter how encompassing it is. The story that allows the person to be more than this experience is a much more powerful story.
Mary-Kate Kelly is a counsellor and psychotherapist (MIACP, MIAHIP) based in Galway, Ireland. She has extensive experience working with clients impacted by life-changing illnesses.
