Transcript
Vikki: [00:00:00] Hello and welcome to the PhD Life Coach podcast where I am again joined by a special guest. And this is going to be a bit of a mashup of a session because this is going to be kind of a combination between interview and coaching with one of my membership clients, Krystina Francois.
Vikki: So welcome, Krystina. So I am so excited to have Krystina here. I have worked with Krystina for a little while. And one of the things that we have talked about is the fact that Krystina is doing a PhD with chronic illness, and it's something that I've wanted to cover on the podcast for a really, really long time.
Vikki: And in our discussions, it kind of came around that you would be interested in doing that. And so I'm super excited to have you here. So maybe we start before you even introduce yourself, let people know why did you feel like it was important to come and talk about this stuff on a podcast?
Krystina: Well, first, like, thank you so much for having me, Vikki. And I think the reason why I [00:01:00] said yes is so enthusiastically is because I had been searching for content, whether it be podcasts or books or online forums that really come from the perspective of folks who have chronic illness and are in a PhD program. And while there are some great books and like some great influencers to follow, that there's not really much out there. And so I thought that given our coaching relationship that, this would be a great, a great thing to, to participate in.
Vikki: That's amazing, and you're so right. And that was something that I had recognized too. But one of the things that I try to be really cautious of as a coach is, like, staying in my lane. And so there's a whole load of topics that I am really happy to wax lyrical about on my own on a podcast. And then a few that I'm not. So listeners will know a few weeks ago, we had guests here talking about doing distressing research. That was one where I really felt I needed people with [00:02:00] proper expertise and proper experience.
Vikki: And although I have family members with chronic illness, and I've supervised PhD students with chronic illnesses before, there's nothing quite like hearing the experience of somebody who is actually doing it at the moment. And just so the listeners know this reason, this is going to be a little bit of a mashup is because I think Krystina has got so much expertise just to share, I just want to ask her questions in the way I would, if she was a sort of interviewee. But equally, Krystina, I know you've got some specific challenges at the moment that we thought it would be fun to coach on. So why don't you tell people a little bit about your background and what's challenging at the moment?
Krystina: Yeah, so I am one of the PhD students that had gone into industry prior to going back to school. So I'm on the older end. I'm 36. I say that because [00:03:00] it will help with the context of my chronic illness as well. I had spent the past 14 years doing immigrant rights, advocacy, racial justice organizing and gender justice work.
Krystina: And I am getting a PhD in political science. I'm in my third year and I'm in the American system. The average graduation rate for my program is, I believe, seven years. So just to let folks know, we have three to four years of coursework first. Then we transition into our dissertation and we have our qualifying exams right before that. Again, I'll come back to why that's important in terms of my disability. And so I was very clear, even as an undergrad, I did political science as my undergrad degree, as well as history. And I knew from then that I would be doing a political science PhD.
Krystina: I really wanted to be a political science professor, particularly because number one, I love the subject so much. And number two, thinking [00:04:00] that it would be really important to have more diverse voices in the field, who are generating knowledge as well as at the front of the classroom and so in my work life, my non academic work life, I would always have in the back of my mind like how this particular phenomenon or experience that I'm having fits into this larger picture of politics, and could be understood by others.
Krystina: So I spent a lot of time doing like training. I would do trainings for legal volunteers, trainings for Undergraduate volunteers and I've realized I really liked the teaching part. I finally after spending, you know, so much time being like a service provider, then a policy analyst and advocate, and finally being in local government, I was like, okay, it's time. It's time to go back to school. And I had this deal with myself that like, I would go back to school by 30 or it wouldn't happen. So I did. I actually met my timeline.
Vikki: And that's huge, right? Even that bit, even that's huge. [00:05:00] And remind me, at what stage did the disabilities and the chronic illnesses start to affect?
Krystina: It actually happened by the end of my first semester. I had gone on an international trip as a part of a human rights delegation, and I had a simple ankle sprain which actually ended up being more complicated and never healed. So I returned from the trip in like October and towards the end of that semester, I had to ask for some extensions, you know, or had to receive some incompletes because of trying to treat this ankle ended up being way more complicated than I initially thought.
Krystina: So I first learned about accommodations and the disability office because one of my professors at the time, you know, seeing me hobbling from class to class was like, you know what, you should register with the disability office, um, and say that, you know, you need some extra time or to be able to zoom into class because I'm really concerned about you work walking on this air [00:06:00] cast with a torn ligament.
Krystina: So that was my introduction also to the formal process of having an injury, disability, chronic illness in academia, 'cause it was actually a professor, nobody else had told me. And I was fortunate that she had actually advocated for me.
Vikki: Yeah. And it, it seems so haphazard sometimes as to how people hear about this. And obviously at this stage, we're talking about an acute situation, right? We're talking about what you thought was going to be a one off period of recovery and then get on. So how did you find the kind of accommodations once you finally heard about them? How did you find that process?
Krystina: So the process itself seems straightforward because, there is a point person and they give you a checklist of the type of documentation that you'll need from your health care provider. There's certain language that they request and at least in the US, [00:07:00] it's because we do have the American Disabilities Act and there are very, very particular language, that the university is held liable for, right, so they have to offer accommodations. They are legally required to provide reasonable accommodations and we'll go back to this reasonable question but it was straightforward.
Krystina: However, getting my healthcare providers to actually complete the paperwork was a little bit more complicated. There wasn't really advice on like how to navigate getting the supporting documentation and then once we finally able to get everything squared away with the paperwork, not all of my professors actually were providing me with the accommodation of being able to zoom into class.
Krystina: So there was the first hurdle was the bureaucratic and then there was the actual implementation and it ends up being a theme of, uh, there's what the [00:08:00] university is supposed to do and then there's what actually happens, um, because ultimately, uh, you know, professors have a lot of discretion in how they run their courses.
Vikki: So it's around that, that reasonable word, isn't it, right? As how do we interpret what is reasonable and it sounds as though in your case, that was interpreted differently by different professors.
Krystina: Definitely. So I, yeah, I had been taking three classes, which is a whole separate story of like taking three classes my first semester and one of the professors just wasn't responsive to the disability office person or to myself. So I experienced a mixed bag just from that, that like last month of the semester of my first year, um, trying to navigate with this injury.
Vikki: And what was the sort of, I guess, intangible stuff that you were having to manage during that time? Because obviously there's [00:09:00] the practicalities of the bureaucratic staff, the actual implementation of things, but like, on the inside, what were you dealing with?
Krystina: I, you know, I was a bit in denial. Number one, I was just like, it's fine. I'll just hop around with my cast. But then it started to, to hit me that, you know, what if there is something wrong? What if this doesn't heal properly? It took up mental space that would have been, allocated to me focusing on my coursework. So there was the time spent that wasn't expected doing therapies and all of the scans and the doctor's appointments and everything like that, which was eating up my time.
Krystina: Then there was the mental space that having this injury was taking up, which split my focus. Imagine this is my first semester in graduate school. I'd been out of school for like [00:10:00] almost 20 years. And being a student again, actually setting up your study practice, the sheer volume of reading, like, you know, for folks who remember your first semester, it's like, how is it humanly possible for me to read all these things every week? And you're asking me to write a paper that's worthy of a journal as a final paper. And I'm like, I just got here. I don't even know, like you know, the conventions of the discipline. Um, and so it was. Already a big period of adjustment and this added a layer of complexity. It's not so much that I had less time to do things, it's that I had less time to rest because I was doing everything that I needed to do school wise and doing everything I needed to do health wise. So that meant less sleep, right? Or that meant less social time, less balance and actually doing both full time.
Vikki: One of the things that I notice a lot with clients that are managing chronic illnesses, tell me whether this sort of resonates with [00:11:00] you, is that there's also a lot of uncertainty about how hard to work yourself too.
Vikki: And I know this is an issue for anyone, right? Grad school is hard, there's always an endless amount of stuff to do, but at least if you're mostly physically healthy, you kind of know where your boundaries are, right? But if you've got a new condition like you did, and you're in this new environment where you're not quite sure how much work you're meant to be doing, how did you navigate that?
Krystina: So I had to basically listen to my body and it gave me no choice. So it was working to the point of a physical reaction. So as I mentioned, I had this like this ankle injury, what happens simultaneously, which I, you know, later on discovered this was the beginning of my autoimmune disease. Um, I start having issues with my hands. And you can [00:12:00] imagine if you have a boot, you're on crutches, you're using a walker. So I basically develop, uh, tendonitis. Uh, in both of my hands, which then impacts what? My ability to write, my ability to type, and so my hands would be fatigued quite quickly.
Krystina: So, it wasn't to the point of I couldn't use my hands, but it was, okay, I would work, work, work, work, work, type, type, you know, furiously taking notes, until, oh, my hand cramps. So it was my body's alarm clock, that actually was what forced me to have some type of balance. I didn't have a strategy because again, I was just thinking about this as an acute injury and me, you know, trying to be the stellar PhD student, bright eyed and bushy tailed, until my, my body said no.
Vikki: And it's so interesting, isn't it? Because in many ways, we want to try and know where the stop point is that's like half an hour before pain hits or, you know, dysfunction [00:13:00] hits or whatever, but that must be so hard, especially when it's something you're not used to and you haven't grown up with. That must be so hard to kind of figure out where that is.
Vikki: I see this a lot with clients who've got like post viral fatigue, so long COVID and all those sorts of things where they've grown up healthy. If they push themselves a bit too much, okay, I'll sleep in tomorrow. Happy days. I'm fine again. Let's go. And all of a sudden they don't know where those boundaries are anymore.
Krystina: Definitely. And I think that was the biggest mental shift was , how do we do that 30 minutes before we get the screaming pain? How do we build in rest, build in, um, you know, and this is where I would like to shout out occupational therapists. And I think occupational therapy is severely underrated because you learn uh, okay, work in three minute sprints and then rest for one minute or 10 minute sprints. Even if that means like putting an actual alarm on your [00:14:00] phone, which I wouldn't be surprised if may accidentally hear what alarm go off during of this session, although I did put my phone on silent, but having those reminders end up.
Krystina: actually being a part of your study practice. So like just like you would make sure that you have environmental alignment of like having your pdfs open and your reference manager. You would have your bottle of water and make sure you set your timer on so that when you're in the flow you are able to actually take care of yourself.
Vikki: It's just one more thing to think about though, isn't it? It kind of sounds easy when you say it like that. And it's just, it's exhausting, right? I have to do my timers. I have to do my physio. I have to do my, whatever it is just to be able to do normal things.
Krystina: Exactly. And that's also where I realized that it was taking energy away from me, just reading the reading. You're not able to do that because especially well, [00:15:00] there's having the brain fog and the fatigue and all of that. And then there's the exhaustion from the medical admin. And you're trying to focus on these brand new concepts and that in and of itself is already a physical strain, like, the amount of time that we spend sitting at a, you know, at a, whether it's a cafe, library, whatever, and we're just sitting and reading, that is also physically exhausting. And I didn't realize that until I had other things that were exhausting.
Vikki: No, definitely. So let's carry on with the story then, because obviously we've alluded to the fact that this acute injury did not get better and go away. So tell us a bit more about how that kind of progressed and how you managed that.
Krystina: Yeah. So basically over the course of a year, I end up having other ailments. I had back to back kidney infections, which was like very random. So spring semester of, again, my first year, I was [00:16:00] in the hospital three times for three weeks at a time. Boom. That's the majority of the semester. So again, I have to advocate for being able to zoom into class. I have to advocate for extensions. As I'm trying to figure out what's going on with my immune system. And then I start in terms of my ankle, the pain is not resolving, the swelling is not going down, although I'm hitting all the marks, in terms of physio, the orthopedist is like, I don't see anything wrong besides the inflammation, and says, hey, maybe this is something systemic.
Krystina: So we do some testing and the testing doesn't come back with anything. So I say this because it's something for folks who have autoimmune diseases, sometimes you don't catch, you just, the blood work is not happening at like the right time, but, your body is already making these, these changes.
Krystina: And so I first end up getting diagnosed with endometriosis, which in and of itself is this, this weird, it's [00:17:00] not considered an autoimmune disease, however, it has autoimmune portions and it's inflammatory. It's a whole body disease, not just a gynecological issue and we are recording this in endometriosis awareness month so that's why there's my little quick plug.
Krystina: I end up having to schedule surgery. And I'm like, okay, I'll do it during the break before the semester starts. So I have the surgery, but one of the things that develops is also the hand pain that originally was triggered by me using a cane and crutches doesn't go away.
Krystina: And what first we think is tendinitis of the thumb, ends up being carpal tunnel and then cubital tunnel. And I end up, luckily having an orthopedist that was a really big advocate for me to do additional testing and to see other specialists rather than just cut me open, which surgeons tend to like to do.
Krystina: Um, and doing some nerve testing and realizing that [00:18:00] I had severe nerve damage in my right hand and I'm right handed. At a certain point wasn't able to even hold a pencil or type, which ends up, you know, being two very important functions for a PhD student. So I end up doing back to back surgeries during the summer to not disrupt my academic flow. First the endosurgery and then the hand and elbow surgery. Um, and unfortunately it ends up taking me two years to see a neurologist. And what I ended up finding out is I have CIDP, which is a rare autoimmune disease that your body attacks or eats up the coating of your nerves, the myelin of your nerves.
Krystina: And normally it starts in your extremities, your hands and your feet but it's happens to your entire body. And so I'm, I am officially diagnosed, and actually, I started treatment last month. And so it's been this long journey of diagnosis and surgery and trying to see the specialists, but also ends up being that I have varying levels of functionality of [00:19:00] my hands, which impacts my academic career.
Vikki: Maybe let's tell people a little bit about what kind of practical impact did that then have on you at this stage of your PhD?
Krystina: Right. So, oh, so I forgot to mention that I also ended up getting diagnosed with seronegative rheumatoid arthritis as well. It ends up that I am able to get into this flow of able to attend class, participate. I download apps so that I can listen to the readings instead of having to hold the book. Or I'm able to use voice to text in order to, you know, write my notes or, or whatever it may be. Um, and I'm able to attend class for the most part. There's sometimes due to inflammation and pain and whatever that I end up having to either skip class altogether or request to be zoomed into class.
Krystina: And I start to get into this flow of the semester is great. By the end of the [00:20:00] semester, I'm burnt out, exhausted, like fully unable to use my hands. All of my little tricks and tips are not sufficient. And I end up not being able to finish my final paper. And so I get into this incomplete trap. So, uh, for folks that don't know, let's say if you are missing one key component of the coursework for your class, um, the university has a policy of being able to give you an incomplete, so a placeholder grade so that you're able to have extra time to complete that task, because grades, you know, are due.
Krystina: I'm able to fortunately have professors who are understanding and willing to give me the incomplete because you're not they're not required to give you one, even though you are a person with chronic illness, and you have accommodations again that reasonable word comes back into play.
Krystina: It is at the discretion of the individual professor whether or not they will give you an incomplete.
Vikki: [00:21:00] And then a bunch of these you still then need to resolve, right? That, you know, that that's not the end of the story. You then have to figure out which ones you're going to retrieve to full grades and so on. And that's the point we met, right, that you had this bunch of incompletes that felt kind of, I don't want to put words in your mouth, but felt kind of unachievable, right? They felt overwhelming, at least.
Krystina: Overwhelming, for sure.
Vikki: Um, and so tell me a little bit about that overwhelm, how you felt when you were kind of looking at that, that pile of, that pile of incompletes.
Vikki: Yeah, I just want to make sure the listeners are aware, it's quite so big, partly because you're a massive overachiever. And therefore had taken on more courses than you needed to take. So this is something else I often see, right? With people who are very, very able like you, and who have health problems is sometimes they're not even trying to do the minimum, they're trying to do the stuff they want to do too, right?
Krystina: Exactly. I will thank you for that disclaimer because [00:22:00] it took me, it even took me a while to accept that the reason why there are all of these incompletes is because I was taking on way more classes than necessary. Um, and you know, my eager, like, I want to learn. I'm here to learn.
Krystina: I want to absorb everything. That class sounds interesting. Um, why not? Uh, yeah, It, how do I say this? I wasn't in denial, but it, because it felt like a constant cloud over everything that I was doing. It was like, as I was, you know, moving forward every semester, finally learning the lesson of taking less classes. Finally, advocating for myself with the department to see if there were any other resources available. I had to completely shift my mindset and finally understand that I had a chronic illness and coming to terms with having these papers hanging over my head and my primary presentation of rheumatoid arthritis was in my hands. I'd spent my whole life with my writing process really rooted in me taking notes by hand, doing the active reading, and [00:23:00] then when I would be writing my papers, I'm a free writer where I just type. And I couldn't do either of those things. I could not take my notes. And, and we know pedagogically that like, there are some people who remember things through the act of writing by hand. And so I was hitting a learning wall.
Krystina: And I was freaking out because I wasn't able to just free type for a few hours to do these papers and knock them out. That's part of why they were hanging over me, is because I wasn't able to address them the way that I had been trained to do up until this point.
Vikki: No, definitely. And. I just want to go back with an additional disclaimer just so all the I know you know this but so the readers are all aware of this. When I said this is because you took so many classes. I don't mean that that was your fault. This is, oh, it's your fault because you don't know. I meant that more to [00:24:00] illustrate why, how much because of the capable and interesting person that you are, how much was on your plate when all this other stuff came along too, and this notion that your old coping strategies, stuff that had got you so far through such an interesting professional career, through all the rest of your academic career and things, suddenly weren't there anymore. How did that feel?
Krystina: It was very destabilizing. So on the one hand, I'm going through an identity crisis of like, I am no longer an able bodied person. If I ever was, that's, you know, that also is like a myth. So I was coming to terms with that. And then I was coming to terms with, I can't do things the way that I always have. And I'm on a challenging new academic journey because PhD is very, very different from undergraduate learning, very different. And you [00:25:00] know, I had been really steeped in immigration law and legal training, it is a very different way of reading, engaging with the text. We're all about knowledge production versus necessarily critique. And it's really hard to do that. when you're trying to figure out how to get your thoughts onto a page, literally.
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Vikki: So I think that's a really good point for us to transition perhaps into a little bit more of the coaching stuff.
Vikki: I am going to ask you at the end more about what you think universities should be doing differently and that sort of stuff, because I think your background as an advocate in a variety of situations, I think you're a perfect person to comment on that. But let's get into a specific challenge at the moment. So you mentioned before we started recording that writing is still the thing that is you're finding difficult. So pick something specific and let's delve into that.
Krystina: All right. So I have a plan of addressing, of completing one paper a month for this term to be able to get these, these incompletes [00:27:00] resolved. And I'm lucky enough that I'm not having to take coursework this semester so that I can focus on that. I started the year January and I think that's when we had had a conversation about the incompletes, uh, I had set out. I'm like, okay, I'm going to do one paper a month. However, I end up with these new diagnoses in January and a surgery and then treatment beginning in February. So boom, two months are off of the board. So now we're in March and now I'm like, okay, I'm going to do a. Two papers, like two, like one of the more intensive papers that is a scaffolded assignment with a professor that's highly, highly critical and engaged, I will say, I'm working on that paper, and then, one of the lower hanging fruit, which is more of a comparative textual analysis paper.
Krystina: So, that's where I'm at right now. My goal is to have this done by the end of the month, and then I'm doing paper, which is more of comparing two different theorists and relating it to my own research [00:28:00] idea.
Krystina: So, I mean, the first thing would be, is it a good idea to work on both of them? Like, am I being too ambitious? I think that's, that's been a challenge of mine, so I'll stop there. Yeah.
Vikki: Perfect. And anyone who's heard me coach before knows I'm not going to give you like a yes, that's perfect. No, it's not. I know. But let's work it through together, right? And I think that process of thinking it through is useful. So just to clarify for me, you originally said you were going to do one per month, one in January, one in February, one in March. And you're talking about doing two at the moment. But that's still, correct me if I'm wrong, with the intention of finishing one of them in March and finishing one of them in April.
Vikki: Yes. Okay, perfect. Because I thought for a second there, our response to not having being able to do one in January and one in February was doing two in March. I wouldn't want to have a conversation about that. But no,
Krystina: that's not going to lie, I did think about it, but I was like, no, I can't.
Vikki: And listeners, I bring that up for a reason because, not with Krystina [00:29:00] specifically, but with other clients. The tendency that if you've got behind on things, for whatever reason, whether it's a chronic illness or any other reason, the tendency to then say, well, I'm going to have to do even more than I planned within this time period now, is really, really high.
Vikki: But if we weren't able to do the old plan, setting ourselves a plan that's more ambitious than the old plan is understandable, but it's probably never going to work, but that's not what you're doing. So that's okay. So take me through why, if we are trying to do one in March and one by the end of April, why did you choose to work on them in parallel rather than to get one entirely done and then do the next one?
Krystina: Um, because the, one of them is, I have to do it step by step, so I have to send her the paper proposal and then I have to send her the draft and then go on from there. So [00:30:00] it's gonna be spread out over time and I didn't want to wait until next month because then that would like bring me closer and closer to the end of the term. So I have to work on it throughout the term, because there's going to be a back and forth.
Vikki: Okay. So there's going to be gaps where it's on her desk rather than your desk. Right. Okay. Right. Perfect. Do you kind of stand by that decision? So do you like your reasonings for picking, doing it like that?
Krystina: Um, that is a good question. I mean, I think, I don't think that my reasoning is particularly strong outside of the fact that it's more time consuming. Like, it's because it has to be spread out over time is what led me to that decision and I don't necessarily think that's a great reason.
Vikki: Why not? Tell me why you don't think that's a good reason.
Krystina: Um, I'm not sure. I think that I love the topic. So I think having it spread out over time is not going to be arduous work. It gives me a [00:31:00] chance to dig into the material a little bit more. It also overlaps with some of the other papers that I have to do. Um, so it won't feel like a slog because I like it. However, the, the part that I don't like is it's going to be a bit of a slog because it spread out over so much time.
Vikki: Okay, perfect. So, what we get to distinguish out here is what are the bits that are the consequence of the circumstance you're in, that this is a piece of work that needs input from your tutor throughout, versus what are the consequences of your decision.
Vikki: Okay. And for me, your decision sounds very logical because if you've got some time periods where it's going to be on somebody else's desk, we get to think what we're going to do with those time periods. And so the first thing, before I tell you the other reasons I think that it's logical, the first thing I want you to think about is how long do we anticipate those being? So is this person somebody who will send it back in a [00:32:00] day or two, or is it somebody where it might sit there for a week or ten days or longer?
Krystina: Uh, no, she's very good at getting the feedback, like, within a day or two.
Vikki: Okay, so, did you consider the possibility of resting in the gaps?
Krystina: No. I did not. I was like, okay, great, and then I'll work on the other paper, the, the, in the gaps. But I probably should rest.
Vikki: I mean, we're not going to do shoulding. We're not doing shoulding. All of this is your choice, right?
Krystina: Yeah.
Vikki: But it's a very different situation if the feedback is going to take two weeks to come, then happy days. Let's crack on with something else in between. We're still not going to call it working on the papers simultaneously, though, because that's not true.
Vikki: We're just working on them sequentially over and over again. Right. But if they're going to only be short gaps, what advantages or disadvantages would there be to resting in those gaps instead of [00:33:00] working on something else?
Krystina: Right. Actually, I mean, I think that I should rest during those times, especially because she gives very substantive feedback. Like, she gives both some of the more, like, grammatical structural things, and also the big questions really, um, really gives, uh, great feedback. So arresting would make sense because it is going to be a lot of work to then implement her edits.
Vikki: So what would be the downsides? Can you see downsides to doing that?
Krystina: I'll immediately, it would be that, you know, I still have, I still have to make progress on the other items. It could be that, given my fatigue and given my, you know, needing to have frequent breaks, um, that I don't write. I take a writing break during that time, but I can do the reading. Whether it be like, I use the listening app, like to at least get a first [00:34:00] pass at some of the reading for my other paper. But that I choose not to do anything physically intensive during that time that could be
Vikki: and I think one thing that might help with this is understanding a little bit better how you structure your week because obviously I know that you do some other work as well. So how many days a week are you expecting yourself to be doing work, either PhD work or other academic work?
Krystina: So I'm also teaching three classes. So full disclosure, that is the other work that I'm doing. So I am marking, course prepping and then, and presenting. So three days, three days a week I teach, and then I have two off days, off days. I have, you know, again, because of my health admin, I have treatment or therapies, basically five days a week. And so what I had put in my plan [00:35:00] was that I have like a writing and reading time block, every day. But the times of the day vary to be conscious of like when I'm most productive, considering the teaching and the health activity that I may have to do. Um, and I, I do, I actually have the writing and reading time block seven days a week instead of five.
Vikki: People who are watching on video may see my eyebrow raise. Why?
Krystina: That's a great question. Um, because I'm very strict about not doing my teaching work seven days a week. I really try to, like, limit it to those days or my, like, full on prof mode and my health appointments, again, are only through the five day of the week.
Krystina: So I figured that I could make up some of the time that, that is, that would be needed on the weekend. And, um But no, then there's no [00:36:00] time for rest. I know that, that, that is clear after saying it out loud.
Vikki: I'm enjoying watching your face as you hear yourself talking about things, because like, making up the time is such a common thing that people talk about.
Vikki: And for people listening, I know a lot of people will be listening to this who have chronic illnesses, but there'll be a lot of people who listen to the podcast every week, listen to this one as well. And this is true for anyone. If there's been reasons that you, you know, personal family things or whatever it is that means that the week hasn't gone exactly how it is, I want you to be really careful around this notion of making up.
Vikki: Because whilst it sounds dead productive and it sounds what's going to keep you on track, especially if you know you've got health problems, then that making up might be the bit that delays you if it adversely affects your health.
Krystina: Right. [00:37:00] And this is where having pause, like having rest is something that should be built into my schedule as well, like just as much as the other time blocks.
Vikki: 100 percent and that's true for anyone right but it's crucial for people with chronic illness. So just to clarify, just for me a little bit, so I can see quite how high my eyebrows go in, um, how many hours time block are you talking about on Saturdays and Sundays? Uh, I can see your face that my eyebrow is going to be high.
Krystina: Um, so I, so it's like about, it's like a five hour time block, which sounds
Vikki: pretty substantive.
Krystina: Yeah.
Vikki: Okay. So, yeah, we are learning to deal with, I think, four maybe autoimmune disease interventions so far, and teaching three classes. And catching up our incompletes and trying to look after our health while [00:38:00] we do this.
Krystina: Yes.
Vikki: And our plan is to do this by working seven days a week.
Krystina: Yes. That does not seem realistic when I think about, especially because, fatigue is such a big part of, um, you know, like between like the lupus and just generally autoimmune diseases, and like fibromyalgia and stuff like that.
Krystina: The fatigue is the one symptom that we don't have a medical intervention for. You can't just pop a pill or like have some matcha and like, you're gonna power on. It's, it's not. It's, if I fall asleep while reading, it's out of my control. Then, you know, it's, it's juggling this, this still, this notion of making up time and having to let go the notion that you will never make up time, just like having a sleep deficit, like you, like it's gone, like it's happened and it's coming to that acceptance that, um, You know, [00:39:00] you have to deal with whatever the situation may be and whether you hit your goal for your time block or or not. Um, that time has passed and then you just adjust. moving forward. So I do think maybe instead of having a five hour block, I do a three hour block. So the week the my week day blocks are either two hours or three hours. So maybe break either breaking it up my weekend time blocks to not be like, okay, from one to five, I'm going to do this.
Krystina: But rather, from 10 to 12, I will work on this, get some rest, do something restorative or something else, and then maybe have another time block for two hours?
Vikki: I'm gonna push you here. I understand this notion of sort of accepting that we can't make up time. I actually think it's an irrelevance because time spent is not what gets your work done. Completing tasks [00:40:00] is what gets your work done. We don't have to make up hours. We have to complete tasks. Okay? And we have to complete tasks to a sufficient standard. One of the examples, I want to go back to something you said earlier, was that because you were doing it over a longer period of time, you could delve deeper into some of the interesting papers.
Krystina: Don't do that.
Vikki: We are resolving incompletes. If you want to read papers for fun, you can do that later. We're resolving incompletes. And this is the danger when we give ourselves more extended periods of time to do things because it feels compassionate. We start saying, Oh, but I could probably do more than one at a time if I'm doing that.
Vikki: And Oh, I can probably do more. So anyone listening, if you've ever asked for an extension for whatever reason, and then you've convinced yourself it needs to be better now because you asked for an [00:41:00] extension, this is speaking to you. Okay? I know a high achiever like you isn't going to enjoy the notion of bare minimum, but we just need to get these done at this stage.
Vikki: You have your whole dissertation phase to dive into your specialist topic, be the leading expert in it. These we need done. And I would argue, especially if you've got chronic illnesses associated with fatigue, if you work fewer hours, you will complete more tasks. Because when you have lots of hours available to you, it's easy to go, Oh, I'll read this other thing too, because I've got time.
Vikki: I'll do this bit because I've got time. I'll spend ages making a decision how to write this sentence. Whereas if you've got less time, you're going to write the sentence and you're going to read what you need to read and you're going to get it done.
Krystina: That really resonates because [00:42:00] also, as a person with extreme fatigue, if I am able to do more with less time, I'm also able to rest. And that's the only thing that is the only medicine for fatigue is actually listening to your body and resting. And so by forcing myself to work in a smaller amount of time, a more realistic amount of time, to get the task done. And just when the task is done, it's done. And then I can take a rest rather than moving on to the next task. That would also be something, like, when we find a cadence as a person with chronic illness, it's really to say, if you have available time, rest. Like, my doctor is very much around, like, if you can fit in a 20 minute nap, do it.
Vikki: Hundred percent. And I want to emphasize, when I say that resting more will probably enable you to get more done, that is also not a reason to rest more. You get to rest more because your body needs rest. [00:43:00] Because you as a human need rest, even if it didn't enable you to get more done, if you need it, you need it, right?
Vikki: But where you've also got these tasks, I've seen it countless times in clients that when they decide to work fewer hours, they power through their tasks more quickly. So I want you to spend some time thinking about two different things. One is about your weekends, okay? How much of your weekends can you clear out?
Vikki: I'm a big fan of two days. That feels like a weekend to me. But then also, building, breaks into the ends of bits of work. So whether it's taking, you know, if you decide not to do that other piece until after this first one's done, and taking the days while your supervisor's got it to rest, it might be that.
Vikki: It might be planning that, okay, when that finally goes in, I have three days where I don't do PhD work before I start the next one. So [00:44:00] that it's not this relentless train. It's periods of getting stuff done and then recovering. How does that feel?
Krystina: I think that that makes a lot of sense. It resonates. Um, it also, you know, in terms of motivation, unfortunately, I am a power through kind of person, which is part of how we are in this situation.
Krystina: But I mean, that's just, uh, my, my innate reaction is like, okay, if I just hit this goal, um, knowing that there's this reward at the end. And so whether that be the three days off in between papers or a certain amount of time between papers, or rewarding myself with, like, a weekend where I don't, like, actually do any academic work.
Vikki: I mean, that's just a weekend. That's not a reward. I still remember, there was a postdoc I worked with years and years ago, and I remember her talking about the Easter holidays. She was like, it was amazing. I had two whole [00:45:00] days where I didn't work. Dude, that's a weekend. You're meant to do that every week.
Krystina: Oh, you mean it's not a seven day, like life isn't seven days? Um, yes. So, also, honoring, I would say, honoring the weekends would be another thing to think about.
Vikki: Yeah, the one thing just from something you said, I want you to be cautious of is, these little mini rewards at the end of handing things in, I don't want you to let that become boom and bust. So I want you still to be thinking about how am I doing my three minutes on one minute off? Or how am I doing my 20 minute naps? How am I only working my allocated time blocks and all of those things? Because what we want to be doing is working in a sustainable way and then having a gap. Working in a sustainable way, not, Oh, I am a bit sore, but I'm going to power on through because if I can just get this done, I'll have three days off. We're not talking about that. We're talking about maintaining this kind of maintenance level of activity [00:46:00] and adding the, the periods of time off.
Krystina: I think that sounds right.
Vikki: And one of the things, and you can let me know whether this is okay to share, but obviously you're in my PhD Life Coach membership. One of the things that I'd like to work on with you in the future when we're in our group coaching sessions, is the sorts of thoughts you're going to have to nurture during those rest periods, so that they're actually restful and don't consist of you going, I should be working. I should be doing something. Why am I just laying here? I should be able to get on with my stupid body doesn't let me do it. Those sorts of things. So it's kind of beyond the scope of today. Maybe it's something I'll talk about in a future episode. But we can certainly work on that in the membership so that in those periods, whether it's during the day or in kind of blocks off, you're like, look, you know, if you go to like a spa or something, you're like so fancy and so nice. So you get that sort of vibe when you take a break, rather than [00:47:00] say, oh, I'm slacking off today. Yes, yes, we want the bright sunshine down on your face. It's like, ah, it's so nice to have a rest kind of vibes. So we can work on that together.
Krystina: Definitely. We're going to need to work with that.
Vikki: Perfect. So, before we finish up, I want to ask you what you think, and we're not going to talk specifically about your members of staff, your university, but at a more general level, because academics listen to this too, and I'm actually going to send it to some universities as well. what do you think that universities should be doing more of, less of, better, to, um, support PhD students working with chronic illnesses and disabilities?
Krystina: So the first thing that comes to mind is definitely, there's this deference to the person who is facing the illness on what it is that they need, but we actually are often overwhelmed with even just coming to the understanding of what our health needs may [00:48:00] be, but like, we have no idea, because most folks that are coming to request accommodations, it's because it is a new illness.
Krystina: And so it's not fair to put the burden on what is it that you need the university to do or what is it that you need from your professors, to put that burden on to the student who is already trying to navigate so much. It would be helpful if you all if folks had like some commonly requested accommodations or, you know, if a student, if somebody has fatigue, here are some common things. If, if folks have a physical limitation, here are some common things. And I will say that like my university has been like helpful in some ways of that, like the person who serves in the role of the disability advocate. Also resourcing the disability office in your university, having one person or a few people really be the advocate and the point person for hundreds of [00:49:00] students or thousands of students, depending on how large the university is unfortunate, and it does a disservice to both the students and the professors, because neither one is getting the support that they need in order to successfully progress forward.
Krystina: So properly resourcing, your disability office with enough staff, and making the investments in the support technologies like Otter AI and Grammarly, and these are not plugs specifically, I am not sponsored by any of these people, but there are a whole slew of technologies now that are AI based or are just better than some of the old, desktop based softwares. Like we're not all sitting at desktops anymore. We're on our laptop or we're on our iPad or tablet, or we're on our phones. So Investing in app based, or web based interventions is, is way more helpful.
Krystina: Um, and then lastly, there needs to be some reform around [00:50:00] incompletes. Incompletes can't be the only solution for students who need extra time, or whose disability or chronic illness interrupts the semester because it ends up being a trap, and I think that institutions are aware which they've responded by giving less time for the students to complete their incomplete to motivate them to get resolved faster, but actually, when you have a chronic illness that is unpredictable, It increases the burden and the stress and emotional dress on the students.
Krystina: And my very last point is the culture shift, that if you're not meeting deadlines, that doesn't mean that you're unreliable because your illness is outside out of your control. And I think that's one of the, the biggest learnings for me in unpacking my own internalized ableism is that you're not unreliable, you're sick.
Vikki: That's huge. I'm sure so many people need to hear that. I'm going to add a couple that I've learned [00:51:00] from you, just to add them in. And one is around this definition of unreasonable. So for me, I don't understand why at least an individual university doesn't decide what's reasonable. I just think the idea of individual academics being able to determine what is reasonable. Now I know, teaching in like sociology is different to physiotherapy or whatever. I get it. There needs to be some level of sort of local understanding. But It seems to me there should be much clearer expectations that at least normally, this would be reasonable, this would be reasonable, this would be reasonable, and for those professors to then be properly resourced to do it, right. Because there is the other, you know, I've been, we're both academics, we both teach, we have both been, I'm sure, on the receiving end of accommodation things.
Vikki: Some of which are dead easy, you know, extensions or whatever, fine, no problem. But when [00:52:00] it's then, you know, you've got a blind person who's going to be in your laboratory class or whatever, it's like, absolutely, I 100 percent want to accommodate this. What specific expertise and extra resource are you providing me with so that I can do this properly, and I'm not making it up as I go along.
Vikki: And so I think the university's investing in that sort of, so there's a much clearer structure and support for the academics, because there's some academics who are just idiots about this stuff, but there's a huge number who want to help, but are already overwhelmed. And when requests come in, it's just one, one thing too many to think about. Right. Um, and that, but yeah, before I say this, is there anything you want to say on that one before I give the final one?
Krystina: I think that it's a hundred percent right. That universities should invest in preparing professors, how to respond to, um, to request and actually sharing best [00:53:00] practices. I think that is, the low hanging fruit is here are some best practices. Not so much, there's this emphasis on terminology and, like, it is extremely important, but actually being able to ensure that your student is able to participate at the level as anybody else, regardless of their ability status is what is most important.
Vikki: Definitely. And for me, not even just training, but actually people to help you do it. Because like, if I need to provide my learning materials in five different formats for five different disabilities, I want to do that, right? I want to make this as accessible as possible. But that's just quintupled my workload in many ways, and that's not always feasible.
Vikki: So yeah, so actually having some kind of done for you service as well, where the professor, if you have somebody with X disability, you get access to these people who will annotate your pictures and put all the alternate text and all that jazz.
Vikki: And then my last one, [00:54:00] and this is unfortunately U. S. specific, and so it just blowed my mind, is around when people have to take time off for things, is thinking about implications for healthcare, which I know we've talked about in your situation, and thankfully makes me grateful for the UK every day that we don't have to think about these things, but in countries where there is health insurance, universities having really clear policies around their students in terms of what happens to your health insurance if you need to take leave of absence, if you need to take suspensions and things, because the fact that you even had to consider that just blows my mind.
Krystina: Right. And I think that is one of the biggest challenges for students with chronic illness or disability is when you actually what you really, really need is a medical leave of absence and you can't take it because you need the health insurance from your student health insurance, and I think that, um, also like for any administrators that are listening, often [00:55:00] there are academic consequences for not performing or meeting a certain deadlines. However, there's often not an awareness of what the consequences are in terms of your access to healthcare because access to healthcare is tied to your full time enrollment status. So let's say if you are not able to be enrolled full time because you have a registration block on your account because of an incomplete, that actually has health care implications, at least in the U. S.
Vikki: And the version of that that is across the whole world is visa implications as well. So, right, for any international students who are experiencing chronic illness while they're overseas, I've seen that be a real issue as well, where they need to take a leave of absence. But if they take a leave of absence for more than three months or whatever, they lose their visa status or their family loses their visa status or whatever it might be.
Krystina: Exactly.
Vikki: Amazing. Thank [00:56:00] you so much. That was absolutely incredible. I appreciate you so much for sharing all of that. I hope the little coaching block was useful too, and I can't wait to keep working on it all with you in the membership. So thank you so much for coming, Krystina.
Krystina: Thank you so much for having me. And this was such an important conversation and I hope that it leads to folks taking action.
Vikki: I'm sure it will. And feeling so much better for hearing your experiences. So thank you so much. Thank you everyone for listening and I will see you next week.
Thank you for listening to the PhD Life Coach podcast. If you like this episode, please tell your friends, your colleagues, and your universities. I'd appreciate it if you took the time to like leave a review, give me stars, stickers, and all that general approval as well. If you'd like to find out more about working with me, either for yourself or for people at your university, please check out my website at the PhD life coach com.
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