Taking Care of the Caregiver: Coping with Loss Before and During COVID-19

This blog is part of a special issue, released for World Mental Health Day. At Voices of Academia (VOA) we strive to make sure your voice and experience is heard. Dealing with loss is complex and an additional strain on our mental health during the academic process. The blog was recorded as part of a conversation between our guest, Jemima Thompson and Marissa Edwards (one of the VoA team) earlier this year. This is the second part of the interview.

Part 4: Identity and the Value of Past Experience

M: And you said also that you felt anxiety and imposter syndrome. Do you think that’s a result of what you went through with your husband? Or do you think that’s more just the PhD environment?

J: I think it’s six of one, half dozen of the other. I think again you have that feeling of, “I really am the imposter. Everyone else’s imposter syndrome isn’t real but mine is” and it’s that weird cognitive dissonance, isn’t it? Like, “I know that it’s a syndrome and that’s more a perception, not a real thing so I’m not really an imposter but I definitely am.

M: Yes, absolutely.

J: When you speak to others… there’s only a small number of PhD students in my department, most of them I don’t know that well.  But I have worked with some of them and got to know them a little bit and you see them and you think, they’re so well put together and then when you speak to them then they’re like, “Oh, every day I just think why am I doing this? How am I doing this? Someone’s going to catch me out.”

M: Yes. I think everyone experiences imposter syndrome at some point.

J: And so I think that it’s a huge part of academia generally I do sometimes think why is this happening? Why do we think this? I went on an academic writing course once and the facilitator said, “Oh, I know that for a lot of you, you’re all used to being high achievers. You’re the A star students.” and I’m going, “I’ve never been an A star student in my life. I am the most average C student”, which is why I never understood how I got to this point doing a PhD? because like my GCSE’s were average, my A levels were average. I’ve just plodded along and I wonder if part of imposter syndrome is this assumption that you must be this really academically gifted person to be in this position. And actually, it’s not. I think sometimes a PhD is not always about being super intelligent. It’s about how you are applying the way that you think and about endurance. It’s that pigheaded bloody mindedness to keep getting up every morning.

M: I agree!

J: And I think for those who get through the PhD process and continue in academia it’s part of it too.  I’m only halfway through so I’m deep in the middle of it at the moment. But when I speak to the postdocs and supervisors and more senior academics and go, “Why did you carry on? What made you keep going, even in those moments where you wanted to stop but didn’t?” because I wanted to know the answer. And what I’ve learnt is that within academia you have these very strong-willed, pigheaded people and if you’ve been through this process, you are going to be, “Actually I’ve had to work really hard to get here.” So I have to believe what I say and what I do. I have to believe that what I’m doing makes a difference because otherwise, definitely doing this whole crisis with COVID, I’m going, “What is the point? My entire PhD is basically saying doctors should be nice to people. Does that really matter right now?” 

M: Oh, I think it’s so important. 

J: Yeah, I think academia generally, and the PhD journey itself can be very hard. You’re speaking to other students and all the memes you see and all of the stuff that you see on Academic Twitter and you think this is just part of the experience. But just because something has always been this way, does that mean that it’s right? And we should actually be trying to change things, and I think with any institutional change and improvement, it has to come from the bottom up. Because at the top you’ve got this belief that, “Well I went through it and I survived and I’m fine and…” so on. So, it needs to come from below. But of course, when you’re below, there’s someone that’s always there ready to put their big boot on your head until you stop.

M: That’s right.

J: And it’s trying to find those people that have that voice and that ability and willingness to stick their head above the parapet and say, “Just because we’ve always said that PhD students feel imposter syndrome, that’s just the way it’s going to be. Maybe if we change the environment and change the way that we think about it, people wouldn’t feel like they don’t deserve to be there and actually people would realize that they’re meant to be there.”

A PhD is basically an apprenticeship. Like if I were a mechanic, I would go through an apprenticeship process. So, what makes this any different? Really, it’s just that this perception and this view that academia’s this big, fancy place up in the sky where everybody is so wonderful. And I just don’t think that is always the case. Having worked in other environments and other industries, I don’t see what the big ‘brouhaha’ is with academia.

Part 5: The Impact of Major Life Events on Perceptions of Academia

M: I also wonder whether having gone through such a huge, life-changing event has given you a different perspective of academia or not? I mean, I don’t know. And you can say no!

J:  I don’t know if I’ve ever considered it in that broader sense before. I guess it’s just generally, it’s just made me a bit more questioning. Like, do things really have to be the way they are? And if I could have my time again knowing what I know now and knowing the people that I know now, what would I do differently? And I’ve done other jobs in leisure and hospitality and you just go academia is not all that, really. And there’s this culture of, you have to work all the time and you have to overwork to succeed. I think one of the things actually that I have taken from my experience is that life is to live and I already gave up quite a lot in my twenties to look after somebody and so I’ve always felt since then that I’m playing catch-up with life.

And so I entered academia quite late really. I entered here in my late 20s where others have been there the whole time working through the system and I’ve placed myself there a bit later.  So as a result, it’s made me go, “No, I’m not going to sit here seven days a week, slogging my guts out 60 hours a week, I’ve done that!” And I don’t think that not wanting to do it all the time makes me less of a scientist or less of an academic than someone else. It might mean that maybe I won’t write that extra paper or I won’t do this extra thing but everything that I choose to do on top of my PhD is because it’s something that I’ve decided that I want to do. I know that for some people it’s very strategic and it’s about, “What’s going to advance my career?” and I don’t think there’s anything wrong with that.

For me, I just want to be happy and doing what I do makes me happy. Also, I missed out a lot on seeing my friends for a lot of years. My friends and my family supported me through all of that. And so I want to spend time with them because you don’t know how long you have in this world. And I have a new partner now. We’ve been together a few years and we live together and I want to be able to enjoy being with him in a different way to my previous relationship. I’m trying to… I’m having to learn how to do it, like have a ‘normal’ relationship because the previous 10 years had been this weird dynamic that became less and less ‘husband and wife’ and more and more ‘carer and patient.’

M: Yeah, that absolutely makes sense.

J: So I think actually as an academic it shaped me in terms of boundaries. I am quite insistent about boundaries and I do find it hard and I do think sometimes, “If I worked harder, I could achieve more and I could do better.” But I’m not going to sacrifice certain things. If my friends say, “Hey, we’re going to the beach next weekend. You want to come out for the day?” unless I’ve got deadlines on Monday and I’ve got stuff to do, then yeah, I’m going to go and do that! Life is too short. I don’t have the inclination to sit just working and not doing anything else.

Also, I’ve done those 70, 80, 90 [hour] weeks, I managed a pub for a while. So the long hours, I’ve done that and don’t really have any desire to put myself through that again. So I suppose it’s made me more strict on myself and I suppose what’s important to me is not the same, maybe, as other people. Maybe it’s my past experience as a carer and someone who has lost a loved one, who knows? It’s always that ripple effect, isn’t it? Where does it begin? But maybe if I hadn’t gone through that I would be more inclined to say, “Well, I’m happy to work a million hours a week and not sleep.” Whereas actually I’m very much, “No, that’s not happening. I’m not doing that.

And things like my years of terrible sleep. I access a service for people with sleep disorders. I have for a few years because I’ve never been good with sleep and then obviously everything happened and I didn’t really sleep for years and I still struggle now. So I’ve got stuff in place that means that I can try and sleep at night and so obviously, working from home has thrown that balance a little bit. So I’m still trying to be strict about things.  I don’t work in the bedroom because the bedroom is where you sleep and but we live in a one-bedroom flat. So It’s tricky in terms of space because my other half’s been furloughed. So he’s not able to work at the moment,  So it’s, yeah, I guess as an academic, it has shaped a little bit of my approach and my work ethic and the way I view academia, what it is and  I’m going to do it.

M: I think that’s an interesting perspective. I mean, I can only imagine that loss would shape you in different ways but and it’s something that we need to talk about. We need to hear about these experiences, so it’s really important.

Part 6: The Importance of Bereavement Support in Academia

M: Another question I have is whether you think that in academia there needs to be more support for people who have experienced loss and grief?

J: From what I hear, 100%. I’ve been very lucky. I’ve had brilliant supervision. My supervisory team are superb. They have been brilliant. When I did eventually open up to my primary supervisor, she was very supportive. But this anecdotal stuff from what I see online, I think Academic Twitter is incredible, it’s an amazing space, but the things that I see and the things that I hear about the lack of support and pushing students so hard, it breaks my heart. A PhD is a three-year period, four or five years for some people. And inevitably things happen in that time and sometimes that thing might be the loss of a loved one and I think particularly the area that I’m in, medical education, and I’ve worked in mental health too. And I think well if we’re spending a lot of time talking about wellbeing and looking after people then we need to be leading by example and sometimes I don’t think that’s happening. 

M: I think that’s absolutely correct.

J: I think the pressure to publish or to be this successful academic means that people aren’t necessarily getting the support that they might need. And actually, we need to be showing compassion for our fellow human beings, whether you’re an academic or a bricklayer or an artist or whatever. You’re a person. Also, I think as well, grief is different for everyone. I mean like for me, my experience was over a period of many years. So by the time he passed away, I was in a very different headspace. I   thought nothing about it. But to someone, if it’s a very sudden thing, if it’s the result of some sort of trauma, accident or something, the experience is going to be very different.

 And I think sometimes in terms of the legality and contractual obligations around things like compassionate leave is not necessarily always appropriate.  I feel like it’s very like in the weeks after someone dies, you can have this much time. Anything else you take, you have to take from unpaid or annual leave or whatever. But what if in that moment, that person just needs to be at work but actually, in a month or six months’ time, then they need to take that time? Because I definitely felt nothing, nothing, nothing, nothing and then just the world came crashing down and I was like, wow, okay, I wasn’t expecting this because I thought I was fine because I wasn’t feeling anything. So if people are going through this, there should be a place where you can say to whoever, your line manager, supervisor, whoever it is that you need to be able to say, “I need a day, a week, a month or some time to look after myself” because if you can look after yourself, you are   going to be better at what you do.

I don’t see how forcing someone to work through is helpful. If you’re only working at 50%, you can only give 50%.  And I think with the situation we find ourselves in at the moment, if people can’t work a hundred percent because they’re stressed and they’re worried and they’re stuck indoors, well, why should we be judging people? And seeing all this, “I’m so productive” and I think, “If you can be that way then great, but not everybody can be and we just need to have a bit of compassion.” Saying the words of compassion is a different thing to enacting them. I think sometimes that seems to be missing. There’s lots of words but I don’t know if there’s much behind them sometimes.

M: Yeah, I agree. I’ve seen a lot of that and I think that your point about the fact that grief can affect you down the line as well is so important. I think that a lot of people would be able to relate to this feeling of feeling numb and then gradually those emotions come to the surface. Organisations need to be aware that there is no time limit on this. Would you have any advice for someone who has experienced loss, whether it’s over a period of time or whether it’s sudden? If you have something you would say to someone experiencing that?

J: It’s difficult, isn’t it?

M: I know.

J: Because everybody’s experience is so unique and, your relationship with any human being is unique, but I guess it would be: When people offer you support, take it. I think it is really easy to assume that when people are being nice to you, they’re not really being nice. Like they’re just, it’s lip service but actually the people that care about you really do care and they really do worry. There’s been things that people have said to me in the years since all this has happened that made me go, “Oh, well, I didn’t realize things were that bad”.  I’ve had friends say things like, “We thought we were gonna lose you. We didn’t think you were going to get through this. We didn’t think you were going to survive this.

M: Yeah. That’s so important.

J: I look back at it now and I go, they may well have been right had I not been able to accept help when it was offered.  I suppose as well, it’s in yourself, knowing when you’re ready as well. You may not be ready to accept that help, but you don’t have to be a dick about it. But it’s difficult. Sometimes it’s difficult not to be either. You’re all over the place. But I think we need to have compassion for ourselves and accept support because it’s only what you would want to do for someone else, so allow yourself to be a human.

M: That’s like such a good summary of what we all need to be doing now. That’s a fantastic answer. Thank you so much.

I wish to add that since the loss of my father to COVID-19 back in May this year, that I have again been lucky to experience support and care from my supervisory team. From the time I was told he was being taken to hospital, right up to today I have been able to say “I’m not doing this today” with no backlash or scolding or worrying about deadlines and Gantt charts- it was actually me that was worrying about falling behind, not them! I did work for most of the time that he was in hospital (almost 3 weeks from admission to his passing), with the odd day off here and there when I was just too tired or shaking too much to type or hold a pen because of the knot it my stomach, the pounding in my head and nausea that overwhelmed me. This desire to work where I could was mostly because I was unable to be there with him or my family due to lockdown restrictions and just needing to have something to fill the void between waiting for daily phone calls from my mum. But there was never any pressure for me to do this, this was entirely my choice. I will always be grateful for that support. It may be part of the reason I’m able to even carry on with this PhD at this point.

Much as with my previous experience, I have mostly been feeling a numbness and emptiness that I have no other words to describe. Although I am carrying on at the moment as best I can, I know that the day will come where I simply need to stop and breathe, though I do not know when it will arrive. When it comes, I have every intention of listening to that voice and doing whatever I can to try and cope. Taking time to grieve should not be time sensitive (but it often feels it is), I don’t think it matters whether you are a professor, student or working in any other profession, you are a human being first and so are the people around you. So sometimes, let’s allow ourselves the time and space to be just that.

Part 7: How to Support Others in the Workplace

M: What would you say to maybe academic colleagues and maybe supervisors who might be trying to help someone who’s grieving? I know again that you went through a very particular process, but drawing on your experiences, would you have any suggestions for people who might want to help? I know there are all these stories of how nobody knows what to say and they feel awkward so they don’t say anything. But it’s not that they don’t care.  What would you like to have heard from someone? It sounds like you had a lot of support.

J: Yeah, I’m really lucky. I’m very lucky. I do have a lot of support and I always have done and I’ve managed to somehow in my life surround myself with incredible people, but I know that there are people out there that don’t have that and I think maybe it’s sometimes… I think as someone who is grieving you’re so worried about, “If I talk about this, I’m bringing people down or I’m making excuses for why I’m not able to perform” and so you’re reluctant to bring it up. And then the other person is going, “I don’t want to bring it up because I don’t want to upset them and I’m going to work on the assumption that if they don’t come to me, then everything is fine.

I think maybe from a supervisory point of view, maybe it is just about regularity of   acknowledgement and perhaps just going, “I know things are tough.” I think just making sure that people know that the door is always open and there’s not a time limit on that. Eventually that does dissipate over time naturally. But I think it might just be worth looking at the way we do things.  Like, the way that my supervisor has approached stuff is, “This isn’t just about your research. I’m also your pastoral care person.

J: And knowing that stuff is going on in your life that’s going to affect the research. Saying, “I need to know because I need to know how we’re gonna do this together and how we can make this work, if we can make this work.” I don’t know, maybe there are supervisors that could take a leaf out of that book. And so it’s not all about, well, how many publications are you going to get? How long is it going to take you to do this experiment, or that?

M: I agree completely.

J: And actually go, “When you ask me how I am, really ask me how I am” because we all do the, “Hi, how are you?” “I’m fine. How are you?” And then someone says, “But REALLY, how are you?” Which is what you do when you see your friends. So why don’t we do that with our colleagues too?  Say, “No, REALLY how are you?”  I’m not saying that this is the right answer.  But yeah, I think just sometimes someone just going, “Are you all right, though? Because I can see that something isn’t right.

M: Absolutely. The last question that I had was, is there anything at a university level, or within academic culture, that should be changed around, how we deal with students who might be grieving or might be dealing with loss.  You’ve already mentioned this but I think the supervisor issue is one thing because you can have a brilliant supervisor within a very difficult university environment and vice versa. Do you think that there’s anything that universities could do as well or…?

J: Yeah it’s difficult, isn’t it? Because I mean, within UCL where I work, recently there’s a lot of stuff about student well-being and approaching counselling services. But I think that’s almost sometimes farming students out to say that’s “That’s a different problem and that’s not really my issue as lecturer or tutor or whoever.” And actually going if you’re having a tough time you should go to well-being services is  shipping students away and sending them off to a stranger. Whereas I feel like the role of like a personal tutor is there to be that first port of call for that maybe.  

And again, I know it’s difficult because of that monopoly on time, academics have all this work to do and not enough hours in the day, but maybe if we just structured the entire system better it could work. Maybe we would have more time but perhaps rather than just sending students off to well-being services people should feel that they should be able to go to their personal tutor, especially if they want to talk about how a problem might be impacting their work.  

But even if it’s a case of trying to deal with it at that level it may be because sometimes student services isn’t the way you want to approach it. You may not feel that you’re at that level, that you just need a little bit of extra help, a hand to lead you through this path at the moment rather than being on a waiting list for six months while you wait for a counsellor to become available.

Within the UK we do also have that you can self-refer to Mental Health Services through your primary care [doctor] which is pretty important to know, which a lot of people don’t know. People don’t know they can access this stuff and it. But again, waiting lists are long and sometimes you don’t need this really formal thing. You just need someone to go, “You’re going through a really hard time. I’m sorry about that.

M: Yeah, some empathy.

J: Yeah, so maybe at an Institutional level, I guess just being a bit more human and not necessarily going, well we have this specific space where you go to deal with that stuff and saying, “Actually yeah, the situation is rubbish. What can we do?” And it is draining to deal with people who are struggling as well. And so again, at this institutional level it’s not just about supporting the students but making sure that those supporting the students have support. It needs sort of filter upwards, I guess.

M: Yes.

J: And as academics, we should all be supporting each other and be able to say, “My student came to me and talked about an issue and I’m struggling a bit, should we just grab a coffee and have a chat?” I think maybe even at the institutional level something as simple as that, why complicate everything?

M: Absolutely. I agree. Thank you so much for being part of Voices of Academia. We appreciate you sharing all of this so honestly and openly, it has wonderful talking to you.

J: Thank you so much.

Jemima Thompson

Jemima is a PhD student at UCL Medical School. Her research focuses on doctor-patient communication, with a focus on patient-centred care. She has a background in Psychology and had worked previously as a researcher in the NHS. When not focusing on her work, her hobbies include volunteering with Girl Guiding UK as a Brownie leader and cross stitching.