Academia and Illness

Tenure, She Wrote is a pseudonymous group blog covering issues for women in science and academia, and has had a lot of well-written, thought-provoking posts recently.
The latest is by @sarcozona, on how to manage chronic illness while doing a degree. She asks: “Do we really want to prevent people from contributing to our fields because they can’t (or won’t) work incredibly long hours?”, and outlines some highly appropriate and intelligent ways to manage grad school while managing your illness.
It often seems that our mental construct of the academic scientist is someone who works >60 hours a week, rarely takes weekends off, and is always up for anything (even another committee assignment). This Nature article in particular set off a storm of online and media discussion around the work culture in science.
I’ve been thinking about this a lot, particularly in light of my own situation. I first wrote about being on medical leave in May, and at the time was cautiously optimistic about my recovery trajectory and ability to return to work. However, a number of serious setbacks over the summer has changed my perspective substantially. It’s clear that recovery will be much slower – and more difficult – than I’d originally envisaged.
Some people think that being on medical leave must be like being on vacation. The reality is not so exciting. My on-leave life is a carefully managed construct that delicately balances time away from the house with resting, doctor’s appointments, dog walking and training, basic chores to keep life on track, and connecting with my (online) community. Too much time away from the house, and I’m too physically and mentally exhausted to do anything else. Too much time online, and I often swing into an ‘up’ phase and don’t get enough rest (and consequently can’t do anything else). Too much dog walking…well, can you ever have too much of that? The bigger problem is having too little of it, and the exercise it provides.
The footprint of this tiny, regulated life covers an area much smaller than that of my academic life. That life contained all the things that professors actively engaged in teaching, research, and service do: travelling to conferences, teaching, working with graduate students, doing field research and writing papers, applying for funding, sitting on various committees… The footprint of my current life would fit into the big toe of my academic life.
The question that nags at me is whether I’ll be able to return to academic science.
I could control my environment, as Sarcozona outlines in her post. And while this is good advice – and something I’m already doing – I wonder at what point the required control would mean I could no longer doing the job for which I was hired. Standing up in front of a group of people provokes anxiety attacks, so I could only occasionally teach or go to a conference. I get exhausted quickly, particularly in interpersonal situations or when I’m thinking hard (for example, when writing or editing papers), so would require a relatively short workday. I find public spaces extremely difficult to navigate, so I’d work best at home.
When do people start deciding that all these environmental controls mean you just can’t work, period? It’s not as though I’ve become stupid overnight – I still have an active and inquiring mind. But by noting my limitations, does that just give people excuses not to collaborate or work with me? How do you maintain collaborations when chronic illness is so unpredictable? While I can do more on the ‘good’ days, I sometimes end up overdoing it because I’m just so thrilled to be ‘able’ again (which then sets me back for the next few days).
My policy thus far has been to be myself – limitations and all – and let others choose how to respond. But when your career is at stake, sometimes being upfront seems self-defeating. I know people who’ve neglected to manage their illness in order to maintain the semblance of an academic life, for fear of how they’ll be treated otherwise.
I don’t have any firm answers to these questions, but ran across this quote from Justine Musk that helped me see things a bit more optimistically:

Being in crisis sucks, but it also gives you a valuable opportunity to reshape your life, in a way you never would have done when you were in your normal zone.

All the best to Sarcozona and the many others out there trying to juggle chronic illness and academic science. Good luck to all of us with reshaping our lives around it.

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15 thoughts on “Academia and Illness”

  1. Great post! I’m another who is finding different ways to work, now that I’m permanently disabled. Completing my PhD wasn’t much harder than it seems to be for most people – it’s not supposed to be a cakewalk! – and my deadline was extended several times after letters from my neurologist. But since becoming Dr Mason, it’s necessary to carve my own niche.
    My reality includes, permanently: No more lab work! No more fieldwork! No more full-time work! For an agricultural scientist, this is no joke. So I’m freelancing, blogging and Tweeting. A few people are starting to give me money to do science.

    • Thanks for the comment – it made me realize that the big question is whether this more limited life is permanent, or if things will change? And from there it’s a matter of accepting whatever the outcome is.
      It sounds like you’ve figured out a middle path of sorts, though I imagine (as with doing a PhD) it’s not a cakewalk. 🙂

      • Yes. I think it’s about choosing to live well. For me, living well involves science. A friend whose disability is different from mine quotes her Nan saying, ‘You may not live the life you expected, but you can love the life you live.’ That’s my motto as I carve my niche.
        The University where I do most of my work needs to improve its ways of including disabled people – no lack of good wishes, but sometimes a lack of good actions. With my visible disability, that has a fearsome and well-recognised name, I perceive an opportunity to contribute to the changing. So I’m doing that. Nobody’s paying me to do it, but oh well, it needs doing.
        I’m glad to have found your blog! On WordPress I mostly avoid the details of my disability but on LiveJournal I run where you’d be welcome.

          • I’ve just posted a link to this blog post of yours, on that LJ community. In case you’re wondering: my ‘fearsome’ disability is multiple sclerosis. It’s no secret on WP but I choose to blog on this site about other scientific topics – for me, this is a place to escape. It’s also a place to show, and enjoy, how much I have to offer. Stephen Hawking is my role model.
            What’s your academic discipline? What’s your disability?

          • I guessed you had MS – have a colleague with same and it’s pretty rough. I have severe depression/anxiety & cyclothymia; my discipline is environmental science/hydroecology. My role model is Barbara Kingsolver, who has used her PhD in biology to write about the natural world and bring it alive for readers.

          • How did you guess? I keep it no secret but it intrigues me when people guess. I’m sorry to learn of your mental illness which must be quite vile, from what I’ve heard. Hadn’t heard of Barbara Kingsolver before but a little goofling leads me to think that I’d like her work.
            Your blog post here is getting a lot of responses over on LJ.

  2. Friend and colleague had what was then called chronic fatigue syndrome and really couldn’t work properly for over a year – and this during his PhD. But he recovered slowly though still tends to go down in a screaming heap with colds, flu, etc. He’s now an academic and doing fine.

    • Always good to hear how people have managed to continue the academic path despite illness. I imagine it also depends on colleagues & departmental/university support & understanding. I had a prof with CFS and the whispers about her around the dept were somewhat malicious. I don’t think she ended up coming back.

  3. Thanks for this. This really rang true to my life – I’m not in academia, and in fact, could not go on with my PhD, because I knew that my disability-related issues would prevent me ever getting a job in the area.
    I would love to see academia more disability-friendly, but from watching my sister’s life (as a senior academic) I can’t honestly say that I’ve done the wrong thing by giving up on academia and moved sideways into other forms of writing. Because I’m never likely to be able to work more than part-time, I am, quite simply, viewed as unemployable by the academic world.

  4. Great post! I teach and manage in the FE sector but luckily have the choice not to disclose my health issues which are mostly not visible. I find that flexibility and pacing are the key and I keep my teaching load fairly light because, though I run on adrenaline whilst standing up in front of a class or conference, the resulting crash into fatigue can be pretty severe. I’m also currently updating my CV by undertaking some CPD courses; Employer sponsored and, since my employer doesn’t know my health status, neither do my tutors hence no ” reasonable adjustments” . I’ve had to pace and, to be honest, tell the odd fib, but I’m enjoying being a learner again.
    Oddly enough in my day job I’m responsible for organising learner support and delivering the in house training on E&D and differentiation so, although I am not open about my own situation, I do bring a little, just a little, insight to the role.

    • Thanks for reading and taking the time to leave a comment.
      I hear you about the adrenaline – I taught a 3h night class and was still drained the next day…
      It’s a tough call to decide what is appropriate and what you *want* to share, versus what you *have* to share.


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