In this episode of Can I Butt In, Bowel Research UK’s Patient and Public Involvement Manager, Sam Alexandra Rose, is joined by Jacqueline Black, a doctoral researcher at Kings College London with a background in health psychology. Some of her work is funded by Bowel Research UK, and they discuss how having a chronic illness can inflict stress on a patient, and how stress can affect the illness that a person experiences. Along with this they outline different methods that people can adopt to cope with that stress that comes with chronic illnesses, including creative writing.
Sam
Welcome to Can I Butt In, the Bowel Research UK podcast where we welcome bowel cancer and bowel disease, patients, researchers, healthcare professionals and carers to butt in and share their experiences. We’re picking a topic every episode and getting to the bottom of it.
I’m your host, Sam Alexandra Rose. I’m the patient and public involvement manager at Bowel Research UK. And as a patient myself, I’m excited to bring more patient and researcher voices into the spotlight.
Hi everyone, today I’m joined by Jacqueline Black to talk about all things IBD, stress and our shared interest of illness and creativity. Jacqueline is a doctoral researcher at Kings College London with a background in health psychology. Her work on the roles of stress and resilience in the early stages of ulcerative colitis is funded by Bowel Research UK, so hi, Jacqueline, welcome to podcast.
Jacqueline
Hi. Hi Sam. Thanks for having me.
Sam
So, do you want to kick off just by telling us a little bit about yourself and what it is that you’re researching?
Jacqueline
Sure. I mean that that question, tell me a bit about yourself is probably the hardest question ever. I hate answering that question, so perhaps what I’ll tell you is the type of person that I am. I’m the type of person who loves to untangle the Christmas tree lights, and I like to think that this is because I like to make things clearer. And have something to show for my efforts as well. I am the type of person who became a vegetarian at 16 but started to eat fish again in my 20s. So, I do think of myself as quite an opinionated person, a person driven by their values, but I can be adaptable as well, you know, and then. Uh, I change, change my beliefs a little bit. And because everything comes in threes, I’m a type of person… uh currently I found out who sketches out what they would do with derelict buildings for sale. So, we’re currently house hunting at the moment and you see these listings for random pot plots of land in Scotland, where I am. And they have these beautiful old buildings that are derelict and, and I just think, oh yeah, if I had a million pounds this is what I’d do, and I like sketch it out. So, consider myself a bit of a daydreamer and a hopeless optimist as well… so that’s me. I’m researching at Kings College London, as you said, and I’m looking specifically at the role stress plays within. Early ulcerative colitis, so really that first year after diagnosis is what I’m concentrating on and also, I’m keen to know whether something can be done about improving that relationship between stress and ulcerative colitis, particularly whether there’s the possibility of building resilience, whether that be skills related, whether that be, you know, the resources, people and otherwise around you that can help counteract that stress, whether those can all be developed.
Sam
Interesting! I love how you, sort of, introduced yourself there. None of that was what I expected you to say, and I loved that. So how did you come to be interested in this topic, then, of IBD and stress?
Jacqueline
Yeah. So, I came to research in a sort of very roundabout way, and which I’m learning is actually quite more common than you would credit it… particularly in health research. People have full careers before they ever, ever get near doing research. And so, it was really, for very selfish reasons of having, having ulcerative colitis myself and being diagnosed with that when I was 21, which, like I said is about 100 years ago, and also coming from an interest in just people, because I had done my academics and psychology really. So being interested in why we do what we do, and I think, like anybody who… has a chronic condition, gets diagnosed. It’s quite a big change and a lot of us immediately think, well, there must be some connection between the way my mind and my body, and particularly in immune, autoimmune conditions. There must be some rationale as to when I feel good when I’m doing positive things, things seem to go better or worse. Or maybe there’s no rhyme or reason at all, but I kind of wanted to know, and I think as a patient, I kind of found that, the NHS is brilliant at medicine, matching me up with the right medicine, trying different things, particularly with a fluctuating condition like ulcerative colitis, which is not necessarily predictable. You can be doing all the right things, and you can still have a flare up and all this sort of stuff. So, I find the doctors and nurses and all of the NHS professionals really great at thinking, right, we’re persevering with this medication. No, that’s not working, chop change, blah blah blah. Anything to do with symptoms, they were right on it, anything to do with the rest of the experience of having a chronic condition is a bit more of a challenge, for a structure that really isn’t geared up to do that. That doesn’t give health professionals enough time to ask, you know, how are you? Like what, what’s going on with you? And a whole range of issues that come with being human with a chronic condition that we look to the NHS to help us with, and unfortunately, it’s just not set up that way. So, all of the psychological aspects, all of the quality-of-life aspects that was the thing that I thought, you know what? I am interested in that. I have experience of that. I have a set of skills that might help with that that. This Is what I’m going to do.
Sam
Brilliant. Yeah, I love that. And you know what you said just then really resonates with me as a cancer survivor as well. Like the hospital being so good at, you know, diagnosing and treating and then kind of when you’re, you’re all set on that side of things It’s like, great off you go. And It’s like, well, actually, you know, I don’t know how to deal with this. Whether it’s cancer, whether it’s ulcerative colitis. And yeah, it’s, it’s interesting, isn’t it? The kind of overlap that there is between those two, yes, they’re very different bowel diseases, but actually patient needs, yes, patient needs are physical but also mental as well.
Jacqueline
Absolutely. And I think actually there’s a lot of commonality between all sorts of chronic illnesses. You know, any condition that you are diagnosed with that you are going to have for the rest of your life. There’s a lot of stuff comes with that isn’t there, that isn’t about medicine, that isn’t about tests and hospital admissions and all that sort of stuff, and everybody needs their own answers on that, or at least their own way of coping with that and unfortunately, it’s that grey area, right? you know, it’s the thing that you can’t say. Oh, just take this pill and everything will be better, not that… in chronic illness you really have that either, but There’s nothing that… there’s no answers and I think sometimes that’s very uncomfortable for people, whose professional life is geared to finding a solution to a medical problem if there isn’t a solution, if you’re turning around to patients and having to say, look, I don’t know, you know, this is a question of how, you as a person are going to cope with it, not necessarily what I would recommend to the to the average, whatever that is. So, some of those conversations could be really uncomfortable, for people whose training is to only deal with as much as possible, what they can say with certainty.
Sam
It’s really interesting to think about it from kind of the healthcare providers perspective as well. So what is your, what does your research involve? How are you approaching this… are you looking at like previous literature? Are you interviewing and doing sort of qualitative stuff? What what’s involved?
Jacqueline
Uh a bit of everything in words. So, my PhD is structured in quite, I think, a typical health PhD way. So, it’s divided into 3 or 4 phases and the first phase is, you know, you look through all of the literature on your subject and try and summarise where we are at the moment. So, I did that and I have published a paper about what, what the relationship between stress and inflammatory bowel disease has been, according to the studies that have been done to date. I’m now at the point where I’ve conducted some qualitative research. So, I did about 10 interviews with people who have ulcerative colitis, and we spent that time talking about that first year after diagnosis, including diagnosis. And what were the sources of stress? You know, how… What was the relationship with stress? What helped to cope? And so on and so forth. So, I’m right in the middle of analysing that and, that is super interesting. With a view to building on those two packages of work to come up with something that hopefully is going to help support people when they are at that period of their ulcerative colitis journey, right that start to help them sort of build-up resilience as a counter-weight to the stress and to be able to test that out. To see you know, is this worthwhile doing? Does it have any impact? Do people find it useful? Or actually should we be looking somewhere completely different? So, once I’ve done my qualitative research that will inform, what we develop in terms of trying to build up resilience. And every, you know, every day I’m learning something new. I’m comparing it to my own experiences, inevitably, which is a double-edged sword. And it’s just absolutely fascinating, fascinating stuff.
Sam
That’s what I was going to ask actually. Is it difficult to keep your experiences with colitis separate when you’re talking to people, interviewing them about their experience? I mean, I guess it has some benefits to it because you can resonate with people. But is that also difficult because maybe you have, I don’t know, some biases there? Potentially or…
Jacqueline
Yeah, absolutely. All, all of, all of. That in a word is true. So, I think there used to be a school of thought that, as a researcher you had to be kind of impartial and objective. You had to sort of package up all of the things that made you, you, and put them to one side and basically, sort of, try and be as much of an automaton as you could be. A sort of blank canvas when interviewing people, and I think there’s a recognition nowadays that that’s asking the impossible, you know, it doesn’t matter what your life experience has been, you have had life experience, and it has coloured the way that you see things, and so now it feels like there’s much more of a movement to say, you know what, I am all of these things and I’m going to share that with you so that you understand when, when I am analysing, when I am publishing a paper summarising my research, you can see it in the context of who I am, and you can weigh up whether I’ve been unduly influenced by what, uh, what I’ve experienced, whether I’ve focused too much on one thing, because I also had… had that experience or the reverse, the something as novel and you’ve never come across it and so you get quite taken with it. I think in terms of research and my sort of approach has been; to be very upfront from the start, when I’m interviewing people about the fact that, you know what, I have ulcerative colitis. And I was diagnosed quite a while ago now, and what this means, I think, in terms of this interview that we’re about to have is that, I’ll understand some of the common experiences of ulcerative colitis, and we can talk quite openly about those. But my journey obviously has been different. You know there are so many people, sick… well, they think over 600,000 people now in the UK who have an inflammatory bowel disease. All of those people will have had an individual experience of what it means to have inflammatory bowel disease. So, it’s trying to walk that line, I think between… Just if you’re comfortable disclosing the fact that, this is also something that affects you and not all researchers do that some take the approach that they want to try and stay objective. For me, I felt that the opportunity to get. To allow people to feel relaxed in the interview to feel comfortable, maybe disclosing more than they would with a person that they were not aware, also had the same set of experiences, was of much greater value than any drawbacks to me. Disclosing the fact, I had ulcerative colitis and actually the feedback that I got was very good, it was like, you know, for some people, this was the first time they had talked to another person with ulcerative colitis. cause they had nobody around them who had that diagnosis. Now the flip side of it is particularly noticeable when I’m now in analysis mode, because all of my prejudices and like I said, I’m an opinionated person, I’ll put my hands up to that. All of my prejudices, all my conceptions about what’s good and bad about ulcerative colitis, potentially could affect my analysis and so one of the ways that you try to address that is I’ll talk to my supervisors about it, so that they are taking the objective view off me and saying, you know, Jacqueline, actually you need to be careful, you’re spending too much time on this because that’s your experience or whatever. But also, I keep a sort of reflexive journal. So, before I start and analysing for the day, at the end of the day, I’ll write a diary entry to say some of the thoughts and feelings that I’ve had, and that sort of thing. So, an example of that has been like, you know, I lost my dad to cancer at the end of last year. One of the interviews that I’ve been doing- analysing recently, that person had a terminal cancer diagnosis as well. So obviously the… you know, that’s going to bring up a whole lot of sort of different stuff to me. But if I can record it, if I can kind of examine it, external to my own brain, rather than letting it all slosh around there and just have all of these effects that I’m not tracking. That’s as much as I can do really to try and make it as scientific a process.
Sam
That’s really interesting, and I’m sure that we’ll talk a little bit later as well about creative writing and stress as well and how those two, kind of, interact with each other. I’m interested in having these, two different parts of your research, so kind of looking at what other people have researched already and what they’ve already found and then also doing these interviews with people with colitis, I’m wondering, how do these two parts of research interact with each other? Like when you’re conducting interviews with people, are you kind of bearing in mind that you’ve seen or perhaps there was a gap in the literature that you’ve seen and that you want to kind of look at that a little bit more.
Jacqueline
Absolutely. I think the thing with research is that it is cumulative. And so, when you look across a whole body of research, which is what this initial systematic review was about, it gives you the opportunity to identify gaps as well as things that are really quite well researched. And from that, I think the influence that had on the interviews was that it helped me decide what… how I wanted to couch questions and what areas I particularly wanted, thought were relevant in the world of stress and IBD. It also made me have particular choices about the way that I approached it as well. And as much as when I looked through uh, you know, I had 30 plus different studies that I identified and was comparing, contrasting in my literature review. I found that there were as many measures of stress as there were studies. And you know, there were seven different types of ways of defining stress. So as researchers, it was a complete… I don’t want to say mess, I wanna say uh, that It was, it was very difficult to make them comparable because every researcher was innovating in their corner and had their own ideas. And what I felt, although it’s not directly reported in the studies, is that actually there’s been very little involvement of people with the condition to say in the context of inflammatory bowel disease, this is what stress is. This is the collection of things that it is. This is how it appears when this happens, that I know is stress. Yes. So that’s, really drove me to take almost the most detailed, qualitative methodology that I could because I thought you know the thing that was missing most of all from the literature was the people with ulcerative colitis voice, about what is stress and the fundamentals of like the topic, you know, all the definitions of stress, resilience, all the key concepts had been, sort of, figured out in a general way put in a questionnaire and the questionnaire was given to the person so the person didn’t actually get to frame any of it. We don’t know if the questionnaire covered all of the different aspects that people had, so that’s the great thing about qualitative research, is because you’re not having to have a numerical value to everything, you’re really digging into the sort of phenomenon that you’re trying to appreciate. You can get right down to the fine detail of, if I was sitting in that person’s seat, what would stress appear to me to be like, in that first year of diagnosis with ulcerative colitis and you know, it’s utterly fascinating, but it’s not the type of thing that people who have very short term time frames or people, you know, doctors who only have 10 minutes to speak to you about, something are going to be able to do or appreciate, to be able to look at that level of detail and say, do you know for this person? Stress was this, and you know for another person it was something completely different. But actually, for this collection of people, all of them said this was a characteristic of the stress that they have. And that’s the really valuable outputs is when you can have that, sort of, level of detail you can start building up. Well, actually I’m going to create a system of support or an intervention or an experiment that gets to the heart of something important, for at least one of at least one of my participants. You know, because it’s their words that I’m basing everything off.
Sam
That’s fascinating. Yeah, I hadn’t thought previously, but yeah, somebody’s one person’s model of stress could be very different to somebody else’s. And if you’re applying your own, yeah. Might not be relevant to somebody. Yeah, that’s so interesting.
Jacqueline
Just to add, we’re all driven by different things when we’re defining stress, you know a person. An individual with stress is trying to make sense of it in order to lessen it right, but a researcher is maybe not so motivated by that. But to make something that can be compared across people or to have a measure that puts a numerical value on it, that might be more of a priority for them. But are those two things you know working towards the same end? That’s debatable, and so I think we need to be very conscious of the fact that our terms, our concepts, the language that we use around things is very driven by what we want out of a conversation or a piece of work.
Sam
Yeah. Great. That’s really interesting. And So what is it that you’re finding so far and what is kind of the relationship with IBD and stress? And I’m gonna break the fourth wall of the podcast a little bit if I can here, because obviously we’ve spoken to each other before and we had a great chat, and here at the big bowel event recently, presenting as well. And I know that we’ve previously talked about stress having an effect on IBD and also IBD having an effect on stress. Can you sort of speak a bit more about the relationship there?
Jacqueline
Absolutely. So this was something that came up out of the literature review. So, when I was looking across the studies that had already been performed, what I found was actually there was quite a few studies that looked at the relationship between stress and the physical symptoms of inflammatory bowel disease. And there seemed to be a sort of quite convincing case to say, you know, that there is a temporal link, a link in time between stress and the physical symptoms of IBD’s. So many of the studies were interested in, whether if you were stressed at month one, were the physical symptoms worse in month two? And a lot of them found that yes, actually, you know, if you had stress sometimes that led to physical symptoms getting worse, or you having a flare. And interestingly enough, a couple of them, the studies actually looked at the relationship as a two way relationship, so, not only did they find that if I’m stressed, then the physical symptoms get worse, but they also, and I think anybody with IBD would tell you this is an obvious point, but it’s one that now that we have evidence to support as an obvious point, if you have physical symptoms, you get stressed. So, it’s a sort of circular thing, and that’s interesting. And particularly in the context of inflammatory bowel disease, because it is a fluctuating condition. So, people go through periods of relapse and remission. Where you’ll have active symptoms of bloody diarrhoea and stomach aches and urgency to go to the toilet and then sometimes for no reason, sometimes because they find the correct medication for you, it’ll all peter out, and you’ll have a period where, you’re not necessarily without symptoms because there’s symptoms like fatigue that persevere. But you won’t have the sort of acute symptoms of diarrhoea and gut pain and things like that. So yeah, so that was that had attracted a lot of attention from researchers. What hadn’t attracted any, much attention at all, was whether the… whether stress had an impact on the psychological, or what we call the psychosocial factors of inflammatory bowel disease. So, this was the things that affect your quality of life, the things that affect whether you feel anxious, whether you feel depressed. You know, all that sort of sort of thing that we that is part of the sort of human experience, right. But it’s not to do with necessarily physical symptoms and again, it’s that dichotomy of, the thing that researchers are researching are the physical symptoms, partly because the clinicians are… that’s what they’re having to deal with. But actually, the psychological not attracting quite so much funding. So, I’ll just leave that as a thought, yeah. Absolutely. Need more studies on inflammatory bowel disease, the quality-of-life aspects, and whether stress is a mediator in that does stress make, your social network kind of collapse does having a social network actually mean that you get less stress with inflammatory bowel disease? Cause you got people who are lifting some of the burden off you. So that’s that was something a gap that we found that we needed more research on that. The point that I’m at now, when I’m analysing interviews is interesting, because that’s going to give us, like I said, the qualitative aspect of it. That, what the experience is actually like? And it’s going to hopefully identify what stress is like in that context? What… how people try and cope with it and like I said, there might be as many ways of coping as there are people with inflammatory bowel disease. And then our ambition is to take what we’ve learned through both of those exercises and turn it into something that would be helpful, to help build resilience to stress. As yet… obviously we don’t know what that will be, because it’s being entirely informed by the stuff that we’re doing, but we’re very hopeful that it will be something that people can access quite freely. It would be lovely if it had a, sort of creative aspect to it potentially, or something like that, but at the moment it’s sort of all to play for in terms of deciding what that will be.
Sam
It’s such a huge area, isn’t it? Just. Yeah, it sounds like there’s so many different avenues that you could go down as well with more research on this. And I can imagine that IBD, like the stress, isn’t just with the physical symptoms, but also all of the appointments that you have to go through like, colonoscopies and all those kinds of… especially new experiences, if you’re kind of right at the beginning of diagnosis, and might also be stressful before diagnosis, you know, when you don’t know what’s wrong with you, you know, what the problem is? And then kind of the general stigma and embarrassment as well that we talk about so much about at Bowel Research UK, you know, just because people are embarrassed about these bowel conditions and talking about their poo. And that sort of thing. So yeah, it sounds like there could be stress coming from all sorts of different angles, unfortunately. So, Let’s talk about, you mentioned briefly the creative aspects that there could be. So, is creativity and helping to deal with stress. I mean, is that anything that’s come up in when you’ve been interviewing people?
Jacqueline
Yes, uh huh, people have mentioned, i think, particularly in the context of hobbies, because having a chronic illness affects all areas of your life, and we specifically ask as well about the impact on work, the impact on relationships, the impact on leisure time. And some people have sort of volunteered, information about creativity, and some people have held it up as a strategy for, for coping with the condition as well, which is interesting. And what I found when I did my literature review, was that I couldn’t find anything to do with the relationship or anybody trying anything in terms of creativity to alleviate stress… IBD. It was very much exercise, mindfulness. Those were the sorts of interventions, cognitive behavioural therapies, talking therapies. And those had positive impacts, you know, sometimes because, or sometimes in the context of a group coming together and learning more about the condition and more about mindfulness, doing yoga, doing walking and things like that, and sometimes one to one, you know, people trying counselling or various other things was an effective stress management device according to the research. But really, nobody was saying, well, let’s just have a creative session, in the abstract and see whether that helps with stress. And I think, I mean, there are probably barriers to doing that, in a sort of what I would call antisocial disease like inflammatory bowel disease. You know, when you’re when you’re having a relapse, when you’re in flare, you don’t feel like socialising, you know it’s socialising is a chore. Being around people is a chore. Because you’re constantly thinking, where is the nearest toilet. Can I get to it? Do I smell? You know, have I… because I’ve been sick this morning or I’ve had to run five times the toilet. You get so, as you say, you get self-conscious about yourself. It has an impact on your identity as well. Because that you’re, kind of, having to go through this transition periods of what normal is for you, you know can I go to the places I would normally go to? Well, you know, I need to figure out if there’s a toilet there. I need to do this and need to do that. Oh no, actually, you know what? I’m not comfortable leaving the house at the moment because I so urgently need to go to the toilet. So, there are barriers, absolutely, to using something like creativity or creative endeavours. And I think that’s also part of the appeal for some of us when we have Flares and things like that is that. We’re not able to go to work potentially, we’re not able to see the people and do our normal routine. So, some creative endeavours are quite straightforward to do than solo endeavours, and so that is actually something that kind of helps us, kind of cope with it in that sense, but whether the research supports that is really a consequence of… there is no research that I’ve been able to find, so uh, it could absolutely be the case, but we just don’t know. However, I think it’s fair to say that there’s enough research to say that stress management, it can be done positively with creativity as well, that more is a general idea that creative efforts are absorbing and therefore helpful to manage stress generally.
Sam
And there’s so many different ways that you can be creative, isn’t there as well?
Jacqueline
Yeah, yeah, exactly. And I think that’s important because coping has to be extremely personal, when you’re dealing with colitis, when you’re dealing with any chronic condition. When you’re dealing with stress, and I think that’s a frustration in the sense that you can’t, somebody can’t turn around to you and say, just do this and that that will sort it, because there’s not a one size fits all. But also it gives you a lot of freedom in how you are going to approach your colitis, your Crohn’s, your chronic illness, your cancer survivorship. You can tailor it to stuff that you enjoy doing. You know you can tailor it to your set of circumstances, to a degree obviously there are certain things that are out of our control, but. I think the more that you can tailor it, so it works for you, and the less that you think of it as well I’m doing this because it helps such and such, or you know my pal said try yoga because that’s the panacea for all things as we know, actually if you enjoy yoga. Great! But if you think actually yoga’s a waste of time and I’m not going to do it, I’d rather do woodworking then go do woodworking, you know.
Sam
Yeah. And I mean just thinking about, say, creative writing, for example, as listeners may or may not know, I’m doing my PhD in creative writing, so I’m writing about all of my cancer experiences through poetry. Or at least that’s what I thought I was going to be doing, about after the first year or so, I kind of realised. Actually, I’ve been writing about cancer for 10 years, and maybe this isn’t something that I wanna write about anymore. And then the question becomes, well, who else am I, apart from a cancer survivor anyway? I don’t know, but I go and find out so I can write about something else. Umm so, it very much became sort of an exploration of identity as well. And yeah, I think that there’s lots of ways that uh, being creative and creative, writing in particular can be beneficial. I mean, just thinking about like the subjects that you write, do you write about your illness and how you feel about that, and that’s a cathartic thing. Or do you write about something completely different and actually the creative writing or the creative work is a distraction. And that’s helpful because it takes you somewhere else and does it all have intrinsic value, because you’re just… you’re creating something new, potentially out of a negative experience, and it’s just the very creation of something that that you’re proud of that could potentially be beneficial.
Jacqueline
I love that you use the word exploration as well. I think that’s a really important component of it, you know. We’re all on a journey with, you know, in life, gosh that sounds very cliche, but sorry about that. We’re all on a journey and I think particularly if you have a health condition or many health conditions, your journey is unique to you, and I think actually, we don’t give ourselves enough credit for being able to identify what is helpful for us and what is not helpful for us, so being able to explore a different world or the world of our illness or anything at all, through something that you can get a little bit lost in that you can get some enjoyment with. It completely absorbs you and takes you out of your current situation, all of those things are valid. And I think the other thing exploration gives you permission to do is, you don’t have to be good at your chosen creative endeavour. It doesn’t have to be pretty. It doesn’t have to be nice. You don’t have to show it to anybody. You don’t have to share it. It can be just yours. I think that’s really important cause I know, you know, my sort of creative outlet is sewing. I give myself such a hard time for like, oh, this was rubbish, and I did that wrong and now I’m having to unpick that. And the most liberating thing was going on to social media and following accounts and these people who do it for a profession are like, look at this mess that I made, you know, and it didn’t work out, but it was an experiment. It was a learning point, and I think that’s a really important thing, is to be kind to yourself and to realise that you’re trying to work through something that a lot of people will never, ever have to face, ever in their lives. Something that you can’t necessarily describe to your nearest and dearest sometimes, you know. Obviously you’re a wordsmith and maybe this doesn’t apply to you, but some of us just can’t find the words for a lot of the things that we feel and the lots of experiences that we have. And so, you know, if your way of working through that is to hammer 2 bits of wood together. Is to chop up charity bed sheets and make a beach wear coverall, which is what I did the other… you know this summer. It’s all valid it’s all helpful because you’re gaining skills, you’re doing something positive and potentially you’re doing a thing in spite of all of this burden, potentially that you have, I think, yeah, I think that exploration, that spirit of exploration. And actually, prioritising it as well, because sometimes it can just feel like you’re rocky 5 at the end of a of a boxing match. All the all the blows that you have to absorb in facing these challenges to be able to step out of the ring to be able to explore something with very low stakes. It doesn’t really matter whether it’s good or it’s bad or it’s not. And if it’s enjoyable to you, I think that’s so, so important for your, for your mental health at the very least.
Sam
Yeah, I think that’s such an important point cause it’s a really easy trap to fall into. I think is to want everything to be good. And I, I’ve been guilty of trying something once deciding. No, I can’t do this. I’m bad at it and never doing again.
Jacqueline
Yeah, Yep. Yeah, done that.
Sam
I do like the idea of like following other people on social media and seeing what they’re doing and seeing that actually people aren’t just out here creating perfect stuff all the time. You know, we’re all out here, you know, exploring and experimenting, and yeah, everything isn’t going to be Instagram worthy. But hey, why not show it off anyway, because it’s part of your journey and what you’re doing and your identity and, and all of that. And it’s just fun and we just need to be kids again with it, you know, just playing and being creative.
Jacqueline
That’s exactly right. And I think particularly, you know, one of the things with inflammatory bowel disease and you know cancer treatment and all sorts of different conditions is that you have this horrible fatigue that people who have never experienced fatigue don’t understand is not tiredness, it’s something that you just feel like somebody’s, like, letting the air out of you completely. Your brain, your body, everything is just in in a very sort of poor state of, of being. And even if you can’t pick up that pen and write, or you can’t get your sewing kit out and sew, or your woodworking stuff won’t work. One of the things that I find really helpful is I can still click on Instagram and look at the beautiful things that other people do, and feel good about the fact, and that’s inspirational. You know, it’s very low energy, if you have fatigue, to witness other people’s creativity. But I think actually, majority of the time, being able to see people doing creative stuff that you like helps buoy you up to a point where hopefully in the future you’ll be able to do something similar, on certain days, sometimes it’s kind of like shadow… You’re like, oh, God, you know, I wish I could do that. I wish. And on those days, perhaps don’t switch on social media, but I would say the majority of the times when I feel rubbish and not able to do anything, being able to look at other people’s creativity. Things that people are passionate about, things that are just beautiful to look at, or rubbish or big bloopers, you know, all of that, I think is something that you can do when, when you do feel that you can’t actually do creative things yourself.
Sam
Yeah, it reminds me of writing. I mean, you don’t have to be putting the pen to paper to be writing. You could be thinking about something. I mean, sometimes if I have, like, an idea for something, then before I write anything down, I might just kind of. It might be like floating around my head for a few a few months or a few years, even. And it’s just, it’s percolating. You know, it’s slowly developing, and yeah, as you say you can take inspiration from what other people are doing as well. And that’s kind of lower energy requirement stuff. And yeah, we can still be creative and feel a bit creative and get ideas even when we don’t have the energy to put them into action.
Jacqueline
I think daydreaming is an important aspect of self-care. And I think that it doesn’t need to be in reference to something that you want to write or paint or something in that way. It can just be like daydreaming about, you know, yourself in a different situation or taking yourself and, you know, create a whole sort of Lord Of The Rings world for yourself, and go and occupy that space for 10 minutes looking out the window. I think we forget that we all have the capacity to do some kind of self-care, and no matter how, you know, how poorly our body feels, you know, even if you are… bed bound and all that sort of stuff, there’s still. And I don’t. I’m conscious that there’s an element to me that says, hang on, Jacqueline, it’s sounding a bit sort of positive. Uh, toxic positivity. You know the oh, you know, we can all do stuff, but actually I think if it has value to you, daydreaming is a wonderful type of self-care that you can do anywhere with no. With very little energy.
Sam
Yeah, definitely advocate for that. Definitely advocate for not living in, in the real world for 10 minutes or so. Always helpful. Just before we sort of wrap up, there is one other question that I wanted to ask you and it’s around IBD and colitis, because we have sort of talked about both today. So, I was just wondering the people that you’re, uh interviewing are people who have colitis, right? But then also we have. Another type of IBD, so Crohn’s disease, for example. Do you think that there would be, I don’t know, this probably isn’t sort of in the scope of your research, but. I was just wondering if you think that there would be any kind of differences between stress in people with colitis and stress uh impacting people with Crohn’s disease.
Jacqueline
It’s not something that I’ve looked into, particularly because my focus is very much on colitis, but when I was doing my literature review, I included both Crohn’s and colitis and indeterminate colitis. You know, all inflammatory disease, inflammatory bowel disease. What I think is different potentially is the experiences in Crohn’s, there can be different experiences I think. It’s fair to say that, uh, with Crohn’s, you have a greater risk of hospital admission. A greater risk of surgery being required than you do in inflammatory bowel disease. And this is, you know, the nature of the disease. You know, the distinction between the two is that Crohn’s affects any part of the digestive tract. And colitis is very much bowel related rather than any other part. And that in itself will affect the quality-of-life aspects for the two communities differently, I think. There’s also much more evidence that diet plays a role in Crohn’s than it does in colitis. You know, my personal experiences being apart from living off Mueller Corner yoghurts for about 3 months when I had a really bad flare uh diet doesn’t make very much of a difference to me, and in fact some of the best, gut health that I’ve been in was when I lived in India eating curry every day, you know so… But for some people, spice is a big thing, you know, for setting for triggering things. In Crohn’s, I believe there is a much more bigger diet component to it and obviously that requirements to change your diet is. It’s also going to affect your stress levels, right? Because you’re going to have to re-educate yourself about what you’re going to make yourself to eat, where you’re going to do it, potentially it might be more expensive if there are certain things, particularly things that you need to get, all sorts of little factors affecting your day-to-day life related to diet are going to be different in Crohn’s than they are in colitis. But in saying that, I think there’s much more in common than there is different between Crohn’s and colitis. You know, a lot of the initial symptoms are similar, you know, a lot of the stuff to do with quality-of-life, like your relationships, your sense of identity, your… you know, the various aspects of your leisure time and work and financial situation, are affected in very similar ways between all of the different inflammatory bowel diseases.
Sam
It’s interesting thinking about those similarities and then thinking about the differences as well, just kind of, made me think it all goes back to this issue of how do we measure stress and how that is going to be different for everybody.
Jacqueline
Yeah, yeah, for sure. You know that. It’s. Yeah. I mean, because we all have the same human experience at one level, don’t we? So arguably, certainly the way that I think about stress is what’s coming in, from either the external environment or internal environment to affect me and do I have the resources to meet that? And so that’s very much in line with someone called, Lazarus theory of stress. So it’s the idea that that stress occurs when you don’t feel you have enough resources to meet the current challenge and, some people don’t see stress that way, so they think of stress as being, uh, sort of rise in physical symptoms and a decline. So, some stress for them might be, oh, I get butterflies. That’s the only time that I know. Stress or it can be that it’s a very long term, thing as well, a lot of researchers use stress and distress interchangeably. So, the idea that you really need to be having a negative emotion about a challenge for it to be stressful. You can simply just feel overwhelmed, you need to actually feel anxious or depressed or some sort of emotional or clinical mental health condition before the they’ll kind of badge that is stress. And I’m very interested to know what people with ulcerative colitis are going to consider stress to be. I feel like I’ve got 10 different stories about what stress is and actually maybe that’s a good thing. Because that will challenge, you know, the way that I think about stress as a researcher. And the way that I’ll bring this up with my colleagues to say, actually, shouldn’t you be taking this into account because people with ulcerative colitis seem to be talking about it a lot.
Sam
That’s great uh, such an interesting field. This is all right up my street. And yeah, I’ll be interested to see how your research progresses and what, what kind of the outcomes are. If we could just wrap up with just one last thing. Do you have any kind of one takeaway that you would like people to know about IBD and stress, or creativity, or your experience, or anything that extra that you would, you would like to finish us off with?
Jacqueline
Yeah, I think I would say… there’s no right or wrong way of dealing with stress, there’s just your way of dealing with stress. And for most of us, we already have a lot of skills and resources as part of our human experiences. That can meet the challenge of stress, in the context of having a health condition. And I think sometimes we forget actually how much we know about coping with things that are challenging or advice that we would give to others about coping with challenges. So, I think for me the thing that I’m working on is actually to be my best friend about it. What would my best friend tell me about how I’m good at dealing with this, who I could ask for help about this? Do I really want to know this information? And being able to bring that to bear, to my experience of stress, I think you know, if you… talking about day-dreaming, if you can envisage a conversation with a you that is your best friend and is the kindest they can be to you. You might be able to have and in visualise, what is the most… the thing that is stressing you out the most and what do I have in my toolbox that can, It can challenge that, it can lessen that stress, and I think, I think we all have that, but sometimes we don’t necessarily take the time to consider. Oh do you know what? I’ve come across this situation before at work, or uh, with my family or with my friends or in whatever context? I’ll just give this a go. And like we said, it’s an exploration it’s not… you have to get it right first time. You could try something, and it might fall flat on its face, and you’re like, well, I’m not gonna try that again, certainly for that aspect, so many of us with chronic illnesses have to keep facing challenges and different challenges and new situations. And it’s exhausting, like, I think that’s in my opinion, part of the contributor to fatigue is that we’re constantly having, being challenged and that doesn’t allow us to recuperate and therefore we get fatigued. But you have more resources, more skills, you are better. Good enough to meet these challenges for sure. And also to ask for help. Because one thing we haven’t talked about which is quite an interesting conversation, regarding resilience, it’s actually it’s not all on, about personal resilience. You know, as communities as nation states as healthcare systems as healthcare practitioners, we all have a responsibility in terms of resilience to making sure that we are helping people. Respond to stress and that responsibility sits out with that person. It’s not all on their back to deal with the stress that they have. I feel like that was a bit of a ramble, but…
Sam
No, that was brilliant.
Jacqueline
…Hopefully it all links together.
Sam
Yes, absolutely. And yeah, I’ll. I’ll try remember when I’m next feeling stressed not to not to take for granted the, the fact that, you know, I do have these ways of coping and yeah, can handle it Jacqueline thank you so much for coming to talk to me today it’s been really interesting. Thank you.
Jacqueline
Oh, thank you so much for having me, Sam. I really appreciate the opportunity to externalise some of this thinking that we all do in our, in our, on our desks by ourselves and it’s been really lovely speaking to you.
Sam
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