Guest Post: Balancing academia and chronic illness

Today’s post is a guest post by Sue Baker, a Research Fellow at the University of Tasmania. Here’s the post:

In this post I will share my experience of being an ecologist while also being chronically ill. I was inspired by Meghan’s posts sharing her experiences of battling anxiety. I think chronic illness (CI) can be a bit like mental health problems in that people rarely talk about it and may feel rather isolated, but I’m guessing there are a bunch of us out there. I’m hoping that people can use the comments to share their own experiences and suggestions to others (note this can be anonymous). It would be great if ‘healthy’ people could also read and contribute, as having supportive colleagues and employers might make the difference between people continuing to work or not. I’ll start by explaining my health issues and how I adjusted my work and other aspects of my life. In my case it is (hopefully!) a good news story in that two years ago I got a diagnosis and am, very slowly, improving with treatment.

My illness

As it turns out I have chronic Lyme disease, two other tick-borne illnesses and a host of other complaints that typically come along with tick-borne diseases, like several co-infections, heavy metal toxicity, malfunctioning digestive system with a multitude of very severe food intolerances, unpleasant nerve symptoms, plus severe fatigue and brain fog which both make it very hard to function. As I slowly recover, most symptoms are well managed, but the fatigue is only getting better at a snail’s pace. Now that I’m being treated, I’ve also discovered that my illness was probably responsible for chronic headaches, occasional migraines, stiff neck and night terrors. The diagnosis meant that a raft of seemingly unrelated complaints fitted together like pieces of a puzzle. Unfortunately, it took a long time to get diagnosed because the Australian medical system denies the presence of the disease here. I think lack of recognition for chronic tick borne illness is prevalent in other countries as well. And ecologists are probably particularly susceptible, because so many of us spend time in the woods. I’ve been bitten by countless ticks during my fieldwork. But one in particular made me ill when I didn’t find it for a few days, so I’m almost certain it was the culprit. Since that tick bite more than 10 years ago my health has been up and down, but the general trajectory was down. I had all sorts of diagnoses, including doctors assuming that it was psychosomatic. Anxiety and depression can be associated with CI as the impacts on your life can be so far reaching, but there’s nothing like being disbelieved by medical practitioners to make you upset!

Life as an academic with chronic illness

I’ve always identified as a field ecologist and used to be an extremely active person, doing long stints of fieldwork, bashing through impenetrable forest and spending weekends and holidays on outdoor adventure activities. Giving up fieldwork and outdoor sports was incredibly difficult for me, but I was grateful that I was still able to continue working. However, I was very worried that if I became sicker I would have to give up work and become a permanent invalid. Different people with chronic health concerns will have very different life circumstances and severities of their illnesses. For some people, stopping work, at least for a time, might be the most sensible option. I don’t have children, but I think that, if I did, I might have stopped working, as I may not have had the energy to both work and be a parent. And there are trade-offs; because I was determined to keep working I didn’t have the energy to socialize much, other than at morning tea and lunch at uni. I was recently very fortunate, after a stressful period of very insecure job tenure, to get a fellowship so I can continue working in the city where I live and my support networks are. I don’t think I would have had the energy to move to another state/country if this hadn’t worked out, and would have worried about finding a different type of fulfilling non-university job within my limitations and deciding whether/when to disclose my health condition as it may have been held against me. It would be good to hear how others have handled these types of situations. Here are some of the strategies I took to deal with being a chronically ill academic:

Part-time, flexible working hours
I shifted from full-time work to four days a week employment. This took the pressure off in several ways. I found having Wednesdays off meant that I only had to work two days in a row and then I could rest. It also buys me some flexibility; often I’ll work Wednesday afternoons, but this means if I need to take time off at other times then I don’t feel guilty about it. I find the academic lifestyle also works well for me, especially as I’m research focused with limited teaching responsibilities. I sleep around 10 hours per night and tend to wake up late, so when practical I avoid scheduling meetings before 10 am, but tend to stay late to compensate. If I’m unwell and don’t have important meetings I’ll just stay home and work from bed if I’m able, and catch up on weekends if I’m not. I also keep a yoga mat and pillow at work because I’ve found that sometimes a powernap on the office floor is all I need to muster the energy to get through the day.

Sadly, I had to largely stop doing fieldwork which was simply too exhausting. I’ve occasionally been able to go out for a single day to get a student started, but only during my energetic periods, and I have to take it pretty easy. I remember one trip where I drove 200 metres while others walked because I needed to conserve energy. Long gone are the days of proving to others how tough I am, but everyone has been really understanding, and getting out into the forest is all the more precious for being rare. I’m lucky that I’m far enough into my career that I’ve learned the ropes of forest ecology so that I can advise students and make sense of datasets from the office. I imagine there are other ecologists with CI who would also struggle with lab work and teaching and would need to find ways around this. For people at the beginning of their careers, it seems that there are niches for people with good skills in statistics, modelling, spatial sciences etc., so that a career should be possible without needing to do your own lab or fieldwork. Teaching can also be exhausting, but I’ve found that if I can sit down rather than stand it makes all the difference. One of the things I struggle with is knowing how hard I can push myself, and having the self-discipline to recognise if I’m overdoing things and wind back a bit. It’s a constant balancing act and I don’t always get it right, so have occasional setbacks which is very frustrating. Sometimes I know I’m pushing too hard, e.g. to meet a major grant deadline, and do it anyway knowing I’ll have to spend some time in bed to recover afterwards.

Managing mental health
Apparently, stress is an enemy that can worsen fatigue-related health conditions. Tricky, since academia is a pretty stressful profession! Several years ago when I was extremely ill, I would often wake in the mornings and know that I would be unable to think/work that day which would trigger an anxiety response. I ended up having several sessions with a psychologist who taught me cognitive behavioural therapy and did some treatments. This alleviated my propensity to catastrophise the situation. I would thoroughly recommend seeking professional help for anxiety and depression related to CI. My attitude is that my psychologist is another tool in my toolbox, whether it be my health or other work-related anxiety (like job insecurity or impostor syndrome) that means I’m struggling to function. But I’ve found that if I’m careful with self-management then it’s very rare to need it. The challenge for me is to not overdo things and to structure relaxation time. On Wednesday mornings I do a very low key yoga class which involves a lot of breathing, relaxation and meditation along with gentle poses. There have been times when I didn’t have the energy to do the poses, but could lie down and still benefit from the relaxation and come away feeling more energised. One of the things I find personally challenging is doing the things I know I need to. I have a target of doing yoga/relaxation/meditation of at least 10 minutes duration at least five days per week. This seems to really help. To keep myself accountable, a friend on a similar quest and I check in with each other on Sunday evenings to report whether we’ve hit our targets.

Who to tell? When to say no?
I’d be really interested to hear how others tackle the question of who to tell about their CI, and how this has worked out for them. My close colleagues and students have been aware from the start, as over a short period I had to cease fieldwork and became bedridden for a time. They have always been very accepting and don’t make a big deal about it. I think it would have been incredibly difficult without supportive colleagues, so I feel very fortunate to work with great people. Over time I’ve been more open about sharing my illness with people. For example I had to get senior-level permissions to gain university support to apply for my fellowship, and at that meeting I told them that I would do my best to get the application in, but there was a risk if I became unwell then it might not happen. I found this took the pressure off me a bit, as I was less worried about letting the university down and getting a reputation for being unreliable. However, in my application I chose not to disclose my medical condition even though there was an option to explain life events that have hindered my track record. I’ve seen people mention health problems, but they’ve always been able to finish by saying “now resolved”. Because mine isn’t fully resolved I decided not to mention it, as I was worried the risk of people questioning my ability to follow through on the research countered the possible gain of lowered expectations of my past achievements.

Back-up plans
I tend to have unpredictable ups and downs that make planning ahead difficult. Something that tends to cause me anxiety is worrying that I might not be well enough to complete something I’ve said I’ll do. When possible, I try and have a back-up plan. For example, I run a series of field ecology practical classes that use up a lot of my limited energy. I co-run the classes with the course coordinator. I have written very detailed instructions in the prac manual and, in the first year, I took the course coordinator around the sites before the course, just in case he had to run the classes without me. For other important things I might have a backup plan of someone else to give a presentation, or just simply warn people that there’s a small risk I might be unable to follow through. I typically avoid driving long distances by myself in case I get fatigued. On one occasion when I had a migraine, I had to ask someone to drive me 1 ½ hours to a presentation, as I was worried my driving would be dangerous. Asking for help can be difficult, but I’ve always found people to be great, and have never felt like my frailty is held against me.

So my personal experience is that being a chronically ill academic is hard but possible, and it makes me even more grateful to have a job I love. In my case I’m hoping that my treatment will be fully successful, and I’ll be out in the field again before too long. For others with chronic illness, I hope that medical advances in diagnostics and treatment in the years to come mean that you will recover too. What are other people’s experiences, and do you have suggestions to share about what worked for you?

11 thoughts on “Guest Post: Balancing academia and chronic illness

  1. I can empathize immensely with much of this. I was born with optic-nerve hypoplasia, so am uncorrectably near-sighted, and hence legally blind in the US/UK. For most tasks this isn’t a problem, though I have to use a monocular to see things far away (almost all presentations, whiteboards, etc). One of the largest impacts this has is that I have never been able to drive, which was particularly difficult growing up and studying for my undergraduate in rural New Mexico (though is much easier now in the UK due to reasonably friendly public transport). When I was 11 I was diagnosed with Type I diabetes, and at 24 Hashimoto’s thyroiditis. The impacts of these latter two are reasonably small, but as you suggest all of these things add up in one way or another.

    Beyond very obvious things (organizing transport for me), it is very difficult to separate the effects of chronic illness from other idiosyncracies of academic life. I’m not very good at having a disciplined schedule, and am often driven by moods and motivations which are hard to pin down, especially when I lack deadlines. That said, I can definitely agree with many of your suggestions regarding flexibility, and being OK to take things slow. Most people have been quite supportive, and I think I’ve been very lucky and privileged to have had the opportunities I do. I can definitely see other colleagues with a variety of health conditions who are treated much worse than I am, especially those with more “invisible” struggles, or who really need more support than I do.

    My largest struggles involve things like recognizing people when I can’t recognize them by voice, especially students, and keeping track of medications/doctors visits etc. Occasionally due to diabetes or thyroid issues I have fatigue or other problems, but I think my struggles here are far less compared to others who struggle with chronic fatigue and/or depression. Thanks very much for sharing your experiences – I suspect a large part of the battle is really spreading awareness that there are many of us struggling with a variety of different things, and that it’s OK to talk about it and to ask for the supports we need.

    • Thanks for sharing your experiences, it’s inspiring to hear that you’ve succeeded given your blindness and other health conditions. When I was writing the post I was pondering the potential difference between illness and disability, although guess there are so many variations of each that it is hard to generalize. Interesting hearing your thoughts that people with ‘invisible struggles’ might be treated worse. I was amused a couple of years ago when I broke my ankle about the huge amount of sympathy I received for something that seemed pretty insignificant in comparison to my other challenges. I’ve sometimes wondered whether having an ‘invisible’ illness might have protected me from some discrimination compared to people with more obvious disabilities.

  2. So sorry for your heartbreaking story. Please don’t anyone give up hope. I suffered from chronic something for over ten years as an ecologist. I began seeing a holistic doctor of physical therapy who then referred me to a group of holistic medicine specialists. Dry needling, whole-foods diet, identifying the triggers, getting off all prescription meds. It worked so dramatically that I am now dealing with the whiplash of living a normal life again. Didn’t see it coming.

    • That’s so encouraging to hear you’re back to normal life again! I’ve also benefited greatly from holistic medical practitioners after getting nowhere with general practitioners. In my case I’ve been treated with a mix of traditional pharmaceuticals, naturopathic medicines, acupuncture and physical therapy for headaches.

  3. I’ve realized I should have mentioned and thanked my support network of my partner, family and close friends. I focused the post on work aspects, but support outside of work has made a huge difference to my quality of life. I hate being a burden on people and am not the best at reaching out, so I’m very grateful to the people who have helped me through this. A few examples include: My partner has had to periodically take over cooking and other household duties that he doesn’t enjoy. He, my sister and a few friends will cook and share meals with me in spite of my insanely restricted (and hence very boring) diet. Friends came round for back yard blitzes when the garden got out of control. I was invited into a weekly painting group when I was looking for a low-energy hobby. People have helped me to get out on some adventures; e.g. organised a double kayak so I could join a sea kayaking trip, carried my surfboard to the beach so I could catch a few little waves, led me up beginner-level climbs at a local crag. My partner even did multiple trips to carry in both our overnight backpacks so I could go on an overnight version of a short day hike and get to camp out at a mountain lake. These little adventures and continuing to go on holidays and experience new places has given me highlights each year and things to look forward to. The nature of the trips has changed, but I’ve still been able to get to some incredible places. Trips on my partner’s yacht and when we borrowed friends’ 4WD camper meant I could easily self-cater with food and lie low if I was having a bad day.

  4. My friend just shared this post with me and I felt compelled to comment/offer my experiences. I have lupus, and have had it since I was 20 (I am now 31).

    I was in my senior year of undergrad, doing a relatively intense field job in salt marshes when I came down with my first lupus symptoms. I didn’t know what was happening, I thought maybe I was just out of shape, but it was a struggle most days to do the work. I pushed through all summer but there came a point where some days I was so weak, I could not open my water bottle to get a drink. At the end of the job my supervisor there told me they wished I had taken more initiative during the job, which killed me. Granted, I never told anyone how much I was really struggling because I was so scared, but to have been forcing myself out of bed and into the field every day in massive amounts of pain and anxiety and then be told I was not showing enough initiative at my job is something that has stuck with me even now.

    At the end of that summer I went to the doctor and got my diagnosis. I was devastated – I was a senior in undergrad for wildlife ecology. I told one of my mentors, who encouraged me to still apply for grad school anyway. I ended up doing my MS and PhD with field work components, but I strategically focused my skill-building on quantitative methods so that I could move into a non-field based job. My very last field season was very rough on me, and I am happy to report I am in a job that is data analysis and modeling driven, so I don’t have to do field work anymore. I never told my MS or PhD advisors I had lupus. I was lucky that I never got so sick that I ended up in the hospital during that time, so it was relatively easy to keep it a secret. But it grated on me emotionally. I was always afraid that people would assume I couldn’t do the work if I disclosed. And having people not know made me feel like I had to work even harder in order to ‘keep up’ with my able-bodied colleagues. It was not an ideal situation.

    I have disclosed to my current supervisor and that has been very positive for me. I can take days off when I need to because they know my situation, and especially now during this pandemic, I was able to start teleworking earlier to keep myself safe. My mental and physical health has improved now that I don’t feel that pressure to hide my struggle.

    • Thanks for sharing. It’s encouraging to hear your current supervisor has been really accommodating, and that disclosing your illness has helped alleviate the pressure you put on yourself. I’m guessing a bunch of us have pushed ourselves to breaking point to try and live up to our own and other peoples expectations.

      • I can relate so much. I have been going through PTSD (+Complex Ptsd) for 4+years. Wednesday breaks seems natural to my body too. Felt guilty about it until now.

  5. I have chronic back pain that flared up during my PhD fieldwork. I was able to keep it manageable through carefully arranging sampling so I had ample recovery after tough days, hiring enough people that no one would be carrying heavy loads to make up for my light one, making sure everyone was trained on all types of sampling in case I couldn’t go out, and arranging to work as a big field team with another grad student on the project so I could get extra hands when needed. I was also lucky that my advisor was understanding when I told him I simply couldn’t do another field season like the last, and that we needed more people and better planning.

    Even with all that and lots of PT, I’m not sure I could handle another intensive stream sampling project. It bums me out sometimes, but I also try to remember that I have diverse interests in ecology and there are many different projects that don’t entail 3 months straight of being bent over a stream.

  6. I so understand not disclosing a CI in an application.
    The point is that people that read your application haven’t got a clue of who you are. You want to show the best side of you – and the best only. Having any sort of struggles medically or psychologically is a private matter in my opinion. People can then learn about these private matters once they’ve gotten to know you and once they know you are not purely lazy for needing an extra day here and there. I think such personal struggles are expected to occur in most professions and don’t need to be disclosed first up in the application process as you are not an invalid slave to your condition. What I mean by that is if you have a child that needs your attention – no one will think twice about you taking time off. And in my opinion this is the same responsibility you have to your own well-being. So people shouldn’t judge and it should be widely accepted to take the time whenever you need it.

    My CI involves joint problems and will need to be considered in my ability to perform certain physical tasks. So I may choose to disclose this in a personal conversation with whoever. Describing these physical struggles usually comes with with unspoken baggage of mental health and energetic limitations. Mostly, having these talks face to face sparks positive conversations about how I deal with it. Making people impressed rather than worried about my performance. But I doubt I would include it in an application of any sort unless I could add that kind of detailed comment to swing this back into a life skill – a trait that will actually benefit my application and make me stand out from the crowd.

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