Some notes on the transcription…
I wanted to provide a transcript of The PhD Life Raft podcast episodes to make the material more accessible.
I have used an automated transcription service to produce this document. These, as we all know, are not 100% accurate. Please excuse the odd typos and grammatical mis-translations. I hope that you will find the documentation of this conversation useful.
You can find the full interview here: https://thephdliferaft.libsyn.com/
Emma
Hi. Hello, Louise, hi, Emma. Right. We have to confess at the beginning that we know each other, and I think you’re brilliant. So we’ll start. We’ll start with that. It’s such a gorgeous opportunity to have a chat with you, and I know because we’re going to be talking about working with a chronic condition, and I know that that is an experience that’s shared by lots of people, and I know this is going to be a really useful one. So thank you for being willing to share your story around that
Louise
you’re very welcome. Thank you for asking me,
Emma
um. So first of all, I’m going to ask, like I do for everybody, to tell us your PhD story. So tell us a little bit about how how was it for you?
Speaker 1
Okay, so, I’m actually going to go back a bit because to the masters and take it forward to the PhD, because I think with a chronic condition, it hits your identity quite hard. And actually, identity has been important to me coming through the Masters into the PhD and beyond the identity of being an academic and the kind of expectations we put on ourselves. So I can’t. I fell in love with academia when I was 33 and did my masters at University College Dublin, and I kind of, I thought, for the first time, I love this game of academia. I love this environment. I love inquiring.
Speaker 1
And I think through that period I I knew quite early on I wanted to do a PhD. So there was a sense of sort of falling in love with myself through that process, and being really keen to just jump straight into a PhD. So I was able to finish my masters in August and then start my PhD, part time, self funded, in January, at Royal Holloway, which is how I know you Emma, and I took, I saw the subject was conceptually interesting to me, but it didn’t feel particularly close. It for me, it was more about wanting to do the PhD, wanting to, you know, to continue this kind of love affair with academia, as I felt it was at the time. So I found my topic, which was post humanism and
Speaker 1
but started part time while working as an A level and drama, a drama and theater studies teacher at a Sixth Form College for a couple of years, also teaching as a GTA on that undergraduate and master’s program, actually at Royal Holloway through the period of being a PhD student. And it’s sort of it took me five years to do it, but in the middle of it, I had fertility treatment and had a baby, and took a year off to do that. So it was, it was a real roller coaster for me. The PhD I started it in love with academia, kind of in love with myself, because I discovered, you know, how great I was at this thing called academia. And then you do, you start a PhD with all this confidence, and it gradually gets brilliant. You
period, yes, yeah, um,
Speaker 1
and you know, there are high points along the way. And so there are specific moments in a supervisor’s, you know, meeting or at a conference with a specific paper, or at a progression chapter, where you kind of go, oh, right, yeah. Okay, so I can do this, and I do love it, but the rest of the time it’s a real challenge. And I’m saying all of this even as at that time, pre MECFS, which is the condition I now have. So even normally functioning, I found it very challenging. And I still remember, actually, at some point in my first year of PhD study, I emailed my supervisor, going, I’m kind of getting the sense that I’m not very good at this. Do you think I should just give up? And to which he responded, No, I’m really sorry I haven’t clocked that. I haven’t been sufficiently encouraging. Of course he mustn’t. So it was that kind of up and down roller coaster until about the last year where I went, Oh, this is what I’m doing. All right. I know exactly what I’m doing now and how I’m contributing, and now it’s fun again. So yes, that that was my experience.
Emma
Well, I love that. It’s a love story that’s always good. But I think so many people have either sent that email or written and then deleted that email of I’m not sure about this. I don’t think I’m good enough, and I might give up. So I think that that kind of and there is something really challenging about the PhD, as you say, come in all guns blazing, and then things happen. And a lot happens while you were doing your PhD. A lot happens. But what we want to really focus on in this time together is now living with, and so I wonder whether we could start with because, of course, you’re still working as an academic, and this has particular challenges, and you can understand then how this might impact if you’re going through a PhD, or indeed starting to launch your research career. So can you just start with explaining where you’re at, what’s going on, much as you feel comfortable, obviously, and then how that relates to your academic work? Yeah,
Speaker 1
of course. So I came down. I’d always struggled with bouts of fatigue, but they were always fairly short lived, and there was anemia for a while and a number of things so but I didn’t come down with MECFS until the end of my first year on my permanent contract at the University of York, and it came out of nowhere, and it flawed me. And so MECFS is a condition, and it’s there’s also the related condition of long covid, where they don’t know what the cause is, and there has been insufficient funding for research, and there’s, there’s a whole gendered thing there, because it’s primarily women who suffer from it. And MECFS has a history of being kind of identified as hysterical, as hysteria, so they don’t know what the cause is. They there’s no positive diagnosis. So what it means is they test you for a number of conditions like diabetes and anemia and other such that cause fatigue, and once all of those been excluded, you are then diagnosed. But it means that there’s no positive treatment protocol anywhere, so you’re on your own as a sufferer. So I think
Speaker 1
are really challenging. And I think academia is incredibly challenging framework to find yourself living and trying to work with a chronic condition, but I think this is compounded with conditions like MECFS, where there is simply no no help, no protocol. Um, so, Louise,
Yeah, so I think this is all compounded by the fact that MECFS doesn’t have any kind of positive treatment protocol. I mean, GPS just don’t know anything about it. And you’ll find employers and supervisors and your peers if you have MECFS or long covid Really, really don’t know anything about it, so you have to do your own research. You have to then also manage your life, and you have to manage other people’s expectations. And if you’re a PhD student, or, in my case, an academic, but with a research mentor and a line manager, you have to manage their expectations of you, and you have to do this when you’re tired. And this is, I suppose, um tired is a really insufficient word for what we experience. So I try to explain it to people as as kind of going imagine how you feel, the kind of fatigue you feel when you are in bed with the flu, and you can force yourself to the bathroom and to go and get yourself a glass of water, and you could even force yourself to try to
Speaker 1
but everything in you is begging you not to do it, and your concentration is really not there. And I think this is one of the really big things with having MECFS, is that it hits your cognitive capacities. So there’s something that’s very common with not everybody with MECFS has exactly the same symptoms, but it’s very common that sufferers have what’s called foggy brain. And it is, it is quite a good metaphor in the sense it ranges from a kind of hazy mist through to a pea soupy fog, where you know that you know things, you know that there’s, you know that playwright’s name, you know that you know that quote, you know that you understood that idea that you read Half an hour ago. And you know all those ideas are there, is impacted. You can’t synthesize ideas because you can’t hold all the ideas in your head at one time, and it’s it just slows you down. You can’t your work rate is just massively affected, and it you have to come up with different reading strategies. You have to be patient with yourself. You have to push back when the university, or let’s say, a supervisor, says, I expect to be able to see that kind of output on that date. You have to start to learn to say, deadlines have to be aims. They can’t be deadlines anymore. And I think so I’ve had huge struggles over the last seven years of having this, and I’ve got much better at communicating to line managers, research mentors and conference organizers and editors in saying when we set up
Speaker 1
at saying, This is my aim, but there’s a really high probability I’m going to ask you to move it. Is that a problem? And so it’s continually just managing expectations.
Emma
I love this, I love this sense of deadlines as aims, because I think they probably should always, should be right. What a health what a healthy way to go forward, instead of having a deadline hanging over you, that to have that as an aim, yeah, this sense, like you say, of managing others as well as yourself. Because, as we were just saying before we start recording, that’s obviously the thing you really want to be doing when you’re feeling rubbish, is managing other people, advocating and educating. But that is, that’s what you’re going to get involved in, almost inevitably, because, as you say, people don’t necessarily understand what’s going on. So this is really tricky, and especially if you’re a PhD and you’re just starting out, and you’re not so sure of yourself, and so I wonder the strategies that you’ve developed and some of some of the resources that you’ve found helpful.
Speaker 1
Yeah, absolutely. I mean, I think, I think something, I reflected on Reese really recently, when I had a meeting with a research mentor, and I reflected on that this as I knew I was going to come on and talk to you, Emma, because I think it has parallels with a supervisor meeting I have been. Now I’m in the privileged, privileged position of having been, I got my PhD in 2012 so I’ve been an academic for 14 years, and although my output isn’t great, you know, it’s quite slow, it’s quite modest. So I’m continually pushing back on that and feeling ashamed and saying, No, Louise, you know, you you mustn’t feel ashamed. You live, yeah, but it’s, it’s, it’s really hard because I um, try, well, there’s expectations on being brilliant, you know. Ref, so Research Excellence Framework, we’re looking to produce world leading output with world leading significance, originality and, you know, and the rest of it. So when you have MECFS a chronic condition, it’s really hard to live up to that kind of expectation. So I sat down with my research mentor at the start of my current research leave, which is such a gift to be able to engage with my work and research in a CO, you know, in a really focused way. But I didn’t want this meeting. I was, I was felt really anxious about it, despite being an academic of 14 years, standing right and and I was like, I’m a failure. I haven’t fulfilled all the things that I said on my research application form. So, you know, I’m going to get marked down and robbing and all those kind of things go through your head. And actually, what was incredibly powerful for me was I sat down with my research mentor, who I like, respect, admire, and who I can feel I can be honest with, and I just said, this is where I’m at. This is what I’ve gone through. And it was incredibly powerful when I was at a very human level admitting to my anxieties and frustrations and anger against this condition, which was stopping me from doing what I wanted, he said. He said, Louise, you it’s not your fault. None of this is your fault. So if you’re going to get frustrated and angry about anything, focus it on things you can change. There’s nothing you can do about this. It is not your fault. And
Speaker 1
I’ve just, I can count on one hands how many times I’ve heard bats having MECFS from anyone, anyone. And there’s this just this expectation that, yeah, so Okay, you’ve got this condition, but you have to keep forming. You just have to, because that’s what the university and everybody expects, and to have somebody turn around who I respect and admire and say, it’s not your fault. And actually, I know that your work is variable, because this condition means your work has to be variable, but at its best is excellent. And I just think, and it made me reflect that actually a recommendation I have for anybody with a chronic condition, and particularly with MECFS, is to choose your supervisor very carefully. It will matter. I have a PhD student who has a different set of chronic conditions. And do you know what putting in applications for extending their submission date is a thing we do repeatedly, but I it’s a part of it has right. So it’s not and and they feel that they are a failure. And part of my job as their supervisor is to say again and again, you are not a failure. It is not your fault, and we find ways around it and through it. So I think that’s my biggest tip. Find a supervisor who gets it and at a human level, is not expecting a robot who is able to see and understand. And I think understanding is crucial, the scale of the trouble, and who can recognize your strength, the PhD, but to do it with a chronic condition? Yes, yes. So and that way, there’s a set, there’s a feeling of feeling seen and understood. And it’s kind of after my research mentor, I almost skipped out of my room, you know, because I felt, I felt seen understood, and I’m like, Yeah, I am good. I am good when I’m able to be good. Well,
Emma
I think this is the thing, isn’t it, that as high achieving people, which we are as academics, we’re going to be hardest on ourselves. And you’re going to say to yourself, as you you know, you saying to yourself, I am a failure. I’m not good enough, which isn’t true. As you say, you need someone in your corner, a champion, who’s going to say, You’re brilliant, you’re brilliant, and to really counter that voice, because, because we are smart people, we’re going to really be very convincing to ourselves that we’re rubbish, because we’re going to have all the amazing arguments that we will deliver to ourselves and evidence that we will produce for ourselves of why we are rubbish. We need somebody else, equally smart to go, No, that’s, that’s nonsense. I can see this. Look, let’s look at this. And so I think, yeah, the people that you’re surrounding yourself with, really, really important, really important. And remembering, it’s possible to change supervisors too. And that is possible if you, if you kind of feel like, actually, my, you know, my needs have changed. Here, it’s possible to shift, anything else that you wanted to say, I
Speaker 1
just think finally, tips would be just I know, in notes that you exchanged with me prior to us meeting here, you said, I want to talk about managing the PhD. And I just think managing is a really key word when you’ve got a chronic condition. And I think it’s really important to put yourself in the driving seat of your own research and your own projects.
Speaker 1
It comes back to setting the terms of expectations around you, because otherwise there’s a feeling of failure and everything feeling out of control. That doesn’t help anyone, anyone. And I think one final thing that’s really helped me recently is I’ve accepted I have this condition. For a long time, I kept thinking I was exceptional and that I would beat it alongside, alongside all the other people who have apparently beaten it. And this year, I’ve got to the point where I’m like, okay, seven years in, I think I have this, and I’ve tried everything, and I’ve researched a lot, so I’ve joined Facebook community groups for MECFS, and it’s been really powerful for me, Emma, really powerful to be to just go, Oh, my challenge is not just mine. It’s shared. And it takes the wind out of it, takes the fear and anxiety and
my final tip. Oh,
Emma
amazing. And I want to go back to the tip before in a minute, but that sense of acceptance is huge, right? And not easy. And as you say that, that’s a long that’s a whole another story in terms of moving towards acceptance, I’m guessing. But then that sense of community, which comes up again and again on the podcast, and I think there’s lots of problematic things about Facebook, lots of problematic things, but social media can is a can be a brilliant forum for finding those people. I know that. I also remember a couple of groups that are have literally been safe in moments to have people who totally get it, and you can just go there and vent and have people validate witness you what an amazing space to be in. And as you say, This is not my fight. You’re not fighting on your own. You’re not on your own. And there will be other people out there with resources and
Emma
ideas so they can help you out that day, you can help them out another day. I think that is brilliant, and maybe in the show notes we can have a list of some places that you would recommend to start with. But then going back to this management you’re talking about managing the PhD and and, and seeing it as something to be managed, rather than endured, or, or, you know, conquered, this sense of of, as you said, putting yourself in the driving seat of this, being CEO of your PhD, taking control. Because control can be energizing in terms of like, I can control this bit, or I can control that. I can control the my working patterns for today, or whatever it is that you can that’s energizing, rather than this sense of like, I’ve just got to go through these things that other people are making me do, and that that can be exhausting, can’t it?
It absolutely can. Yeah.
So the I
Emma
think, though, that sense of of managing and finding ways to manage is really important too, and what you said really profoundly, says that setting the terms of expectations proactively setting the terms rather than, Oh, sorry,
Speaker 1
no, no. And I think that’s hard. I do think, and I It’s hard enough for me now as a senior lecturer to Yeah, to do that right with my employers, but so as a PhD student, yeah, I can see how that would have felt, really hard. But we can, we do have that power, and it is your project as a PhD student, it is yours. And yeah, I yeah, I love it, and I have say it might be useful for PhD students listening to this, to hear that now me as a supervisor, I absolutely love it when this
Speaker 1
is what I want to do. This is how I want to do it, rather than, I mean, it’s just so exciting. So actually, there is nothing wrong in, you know, in feeling, oh God, you know, I’ve got this condition, and I’m setting the terms, and I should just be able to do it brilliantly and perfectly. That is, that counters every single kind of capacity to be creative, to to work happily, enthusiastically. It has to be your project.
Emma
Yes, yes, yes, yes, yes. And that, and that sense of kind of really, the proactive sense, rather than hiding away until it gets to the annual review, and then you are full of anxiety and you’re full of shame and all of that don’t, don’t allow yourself to be in that space. And your supervisor, as you say, will welcome a conversation, really.
Emma
And if you don’t feel particularly comfortable approaching your supervisor, there may be other people that you can approach for support initially, but yeah, keep talking to people. Louise, you are awesome, and I know you have a YouTube channel, and we’ll put that up on the on the in the show notes as well, so people can find that you’ve already given us some tips. I’m well aware of that money’s worth, so I’m just gonna ask if there’s anything else that you’d like to add, or just to reiterate where the tips that you’ve already given as we as we finish.
Speaker 1
Oh, I have given all of my tips, but which one? Which your favorite? My favorite? I think for myself, I think the supervisor relationship, yes is really fundamentally important.
Speaker 2
Yeah. You’ve got
Speaker 1
a chronic condition and you’ve got a supervisor who seems reluctant to engage at a human level, I would suggest that possibly not the best supervisor for you, however brilliant they are. I think it’s so. On occasion I will have supervision meetings that are simply about talking as human beings, about the challenges of of working through specific contexts. And I think that’s very important.
Emma
Amazing. Q, many applications to work with. Dr Louise LePage,
just warning you. Just warning you there,
Emma
Louise, thank you so much. And I don’t even know what I’m trying to say here, but what I know in terms of your advocacy and because that you’re already out there supporting people and but thank you so much today, for sharing your story, and I know this will be a real encouragement to lots of people. Thank you. Thank
Speaker 1
you, Emma thank you and thank you for doing this podcast, I think it’s brilliant. Thank you. Bless.