Knowing when to stop

Whenever I brought up the possibility of dropping to half-time, my advisor shrugged and said something like “you’re still moving forward” or “you’re doing ok.”

But I wasn’t doing ok. I was too sick to work most days and my progress could only generously be called incremental. It was by no means satisfactory. As my program deadlines loomed, I became more and more concerned, but friends, colleagues, and my advisor just tried to be encouraging.

My advisor and committee wanted to know what they could do to help, but I couldn’t think of anything more they could do for me. So I went to my university’s disability services, explained the situation, and asked what kind of accommodations they could offer me. With little preamble, the disability advisor told to take a medical leave.

I left the meeting furious. Here I was, with a chronic medical condition, being told to take a medical leave! There’s no cure for my disease and it’s notoriously difficult to treat. I’m never going to get well, though I might get better. I felt like I was being shoved off, that instead of working with me, my university was trying to get rid of me.

But then I started thinking about the amount of time I was well enough to work. It wasn’t even close to half the time. By the time I’d taken care of basic chores, emails, and meetings every week, I was working only a few hours on research each week. Some weeks, I didn’t even get the basics taken care of, let alone tend to my own research. I’d also just spent 180-odd days of the last 365 in agonizing pain. I was an emotional wreck and having a hard time contemplating continuing my work in the midst of more days like that.

So I decided to take the medical leave and regroup. This wasn’t easy.

If I’d had more examples of successful students and professors who’d taken leave, my own decision wouldn’t have felt so scary. I only knew of one professor who’d gone on leave, and the gossip was not kind, a bit like Sarah Boon’s experience. Since going on leave, I’ve found that Sarah Boon, Elita Baldridge, and PhDisabled all have helpful things to say. One of the great things Elita’s done is to make a github repo with resources for sicko PhD students. Please add your own resources to the list or comments here!

I worry about being well enough to go back when my medical leave is up. I could theoretically extend it, but that’s not financially possible for me. Going back before I’m ready, though, could lead to missed deadlines, perhaps even failure.

I feel like students with chronic illness are often invisible and not presented with good solutions. This conversation (via @lines_of_flight), for example, on how long a PhD should take, should be allowed to take, completely ignores students whose health might slow things down. Universities should have more options than half-time and medical leave for students with disabilities/chronic illness, and I think medical leave needs some big improvements. Right now it has some pretty onerous requirements.

Get sick on schedule

Medical leave at my university must be 4 months long and correspond to a semester. It also can’t be taken retroactively. The timing of my realization that I needed a medical leave worked out with these requirements, but the inflexibility of starting and stopping leave is a huge problem. The flare-ups of chronic illness do not always follow a semester schedule. For students in research based programs, it doesn’t make sense to have this level of inflexibility around medical leave.

Not being able to take leave retroactively, combined with an injunction against working on your PhD project, means that you can fall quite far behind and are barred from professionally important activities. I lost almost 200 days last year to my illness, but I’m not allowed to “make up” any of those days on medical leave. I’ll be finished with leave in time for conference season, but I’m prohibited from submitting abstracts to any of those conferences because their abstract deadlines fall during my leave.

Be independently wealthy

When you go on leave, you’re required to pay a fee of several hundred dollars, your paycheck stops, and you sign forms swearing that you won’t do any work while on medical leave, related to your research or not.

This is the most classist piece of bullshit I’ve ever had to put my name to. What graduate student can afford 4 months with no pay? I’m making up the difference with some very generous help from my support network, my entire savings, and some small (and rule-breaking!) paid projects.If nothing goes terribly wrong, I’ll have about $300 to my name when I start back. I won’t have saved any money and the interest on my student loans will make me even more sick to my stomach than usual.

Some kinds of leave are paid, like maternity leave. Why is recovering from childbirth worth paying for, but not recovering from a broken hip or a lupus flare? I think graduate students on leave should get paid the base grad student salary for at least one term. Or (in my dreams), the government should guarantee an income to all people regardless of their ability to work.

I feel like I made the right decision going on medical leave. I need the luxury of prioritizing my health right now. But not getting paid for four months, having to “get better” by the end of four months or run out of money, and being forbidden from working on my project don’t help me.

How do you feel about colleagues who go on leave? Do you know about the leave requirements at your university and how they might harm your students and colleagues? Tell us about your experience if you’ve gone on medical leave. How do you think medical leave could be improved?

25 thoughts on “Knowing when to stop

  1. I’m confused by the specifics regarding the medical leave — I’m guessing that medical leave is different from sick or disability leave, because otherwise, I don’t see why your institution would be able to pay students when they are maternity leave but not when they are on disability leave? Maybe different laws from other countries? In the US, the struggle has been to see maternity leave treated like disability leave.

    As someone who has organized a laboratory, I will say that leave, by any member of the small laboratory group (including the PI) is devastatingly disruptive to the function of a laboratory. In the cases I handled, the leave was maternity leave. In general, the costs of the leave were borne by laboratory funds. And I report this issue in the context of believing that leave needs to be supported. But, I did not see clear ways to make the leave work within the demands of a small lab (though I am certainly open to more discussion on how one makes it work, without contributing to the significant detriment of the lab).

    One important change –though it costs money– would make a difference: the monetary cost, at least, needs to be borne by a larger institution than the small lab. But even then, the work done can’t be replaced easily, since it isn’t possible to hire a short term employee to do the work of a long term employee.

    I think, though, that this is the kind of discussion that benefits from folks thinking beyond the boxes they normal think in to find solutions, with the assumption that we need to accommodate people with needs different from the ideal worker. Hope I see a discussion here.

    • Graduate students don’t have a lot of the same protections as employees because we’re “students.” So a lot of disability stuff doesn’t apply to us, I think. Certainly university policies don’t treat graduate students like employees. I’m not in the US, but I don’t think graduate students who take medical leaves generally receive any financial support from their institution. Also, many of the laws and policies that support the disabled support a very particular kind of disability – like paraplegia, where you don’t need to take time off – you need workplace accommodations like ramps and a different desk.

      I don’t think that businesses or universities should be directly bearing the cost of sick or disabled people. I think that’s a cost that we should share as a society – thus my support of a guaranteed basic income.

      • The treatment of grad student researchers as “just students” instead of employees is a major issue. And add on top of that the fact that many academic employees, including postdocs, project scientists, staff researchers, etc., don’t get anywhere near the support that they should with regard to many things, and leaves in particular. Most medical and disability leaves in academia are unpaid, which is a travesty. This is one (but certainly not the only) reason that UC postdocs formed a union. The more academic workers that stand up together and push for better benefits and more rights, the better things will be for everyone. Organize and make the change that we all want to see.

  2. Thanks for sharing your experience; I hope that you, your advisor, and school can work together for a longer term solution that’s best for you. This was an unfortunately familiar tale to hear. My housemate last year suffered with a chronic wrist/shoulder injury that had only shown up after starting a math PhD program and making it through her qualifying exams. She was in intense physical therapy for two years (5x week) and all the while having to TA every semester, putting further strain on her wrists (so much of math is still writing on the board!). In her fifth year, she realized that she wasn’t making much progress on her thesis, her wrists were not getting better (in large part because of the teaching she had to do to stay in school), and her physical therapists were recommending a break of at least one year from school/teaching. Not only are there no school-specific resources for her at our ‘prestigious’ R1 midwestern university, but turns out our state/school doesn’t have grad students contribute to long term disability, so she was ineligible to apply to that potential federal resource. She couldn’t afford a medical leave, so she ultimately left the phd program with her masters. She’s happy in the non-math, non-writing job she’s acquired elsewhere since, but I can’t help but feel that her academic community lost someone who would have stayed if there had been flexibility for her to finish.

    • I try to be optimistic. And graduate school is a pretty good place to be with a chronic illness because of the flexibility. Your housemate’s situation sounds really frustrating and I worry too about my own place in academia. I think I have really great ideas and make one heck of a scientist, but am afraid that being sick so often will mean that I get pushed out.

      • Completely – and I hope that doesn’t happen to you. A colleague (grad student) here who is blind and I have been talking a lot about the (lack of) accommodation parallels between disability and pregnancy/maternity issues on our campus here. (As he says, even though ‘reasonable accommodation’ technically has to be made in either case – WHO is supposed to bear the ‘burden’/’costs’ of accommodating is unclear — and that can lead to bad outcomes for the folks without power, aka grad students) But it’s even so much broader than that – as plenty of folks have elders to care for or health issues in their own children (post-postnatal). It really is an issue we’d all have to tackle as a society to make workplaces more flexible for all individuals and all families.

        • yes, all sorts of unexpected things can happen to any of us, at any time – and not just within the limits of a semester. But whatever the silliness of the rules within our own sphere, it is important to know what they are and how to use them. At least with some provisions, the clock can stop. This is a useful thing to appreciate and work with from a career point of view, but it might not help one’s self-esteem. The worst thing I have felt when needing to take breaks or go part-time is that I am not achieving anything worthwhile. This needs constant addressing in my own head. I am now old enough to know i am never going to do all the things I have planned to do, in either the short or long term, and sometimes stopping can allow you to ‘smell the roses’ or interact with family in a way not otherwise possible. But it is still frustrating, although others see me as being energetic and achieving a lot. As I said, apart from any chronic illness or family duties that need to be addressed, there is the problem in one’s own head.

  3. Thank you for writing this. I’m a graduate student supervisor and I have worked fairly extensively with students with maternity, disability and medical leave needs, whom I admire beyond words. Australia has relatively strong protections in place, but their application in practice is often patchy, and the problems become acute when the protections in one system (our university system) conflict with the expectations in another (our welfare system).

    To me, the really vital thing you have highlighted here is the impact on a person already struggling with illness, disability or caring for dependent others, of having to manage the increasingly harsh expectations of thesis progress troped as some kind of virtuous capacity to be productive. This adds considerable stress, especially in relation to employability in the near future, which often really aggravates the symptoms of the original problems.

    Universities are far, far too quick to send generic notices of delinquency instead of sitting down with the person affected to say “What do you need? how can we help?” And increasingly supervisors are being recruited to implement these policies with punitive consequences in their own career record, which is very damaging to all concerned, especially to the trust and integrity in the supervisory team.

  4. some things that have worked/helped for me have been getting very detailed documentation and having things in there way before I need them. ie re: qual exams, TAing, etc. At the same time, so much work one has to do to fight to be w/i the academy with a disability. I have felt pushed out/around at times. It’s also hard to find a supervisor who gets it. I think one of the most important things is extending timelines and expectations. ie what is defined as satisfactory progress for someone without a disability cannot be the same for one with.

  5. I completely understand what you are saying. I have rheumatoid arthritis and if will flare up whenever it feels the need to do so. I’ve had to miss class because of it. and so far, my professors are considerate. But, I am only taking one class and teaching one class. I don’t know how it will be once I go back to a larger teaching load.

    I think it helps to have a good understanding of the ADA and all policies. The problem with chronic and invisible illnesses is that no one believes you when you are sick. Years ago, I had a dean tell me to just take an Advil to deal with my pain issues. I actually said to him “You didn’t just say that to a LAWYER, did you? He retracted his statement, but it still resulted in my quitting and moving to a warmer climate. In any event, you have to educate and protect yourself.

  6. I’m lucky that in Australia I am eligible for a pension which alleviates some of the financial stress of studying and living with a chronic illness. However my leave situation can’t be bettered beyond a drop to part time.

    I start my Masters on Monday, and only time will tell whether I’ll be able to keep up with studying a new language (necessary for long term study and work) as well as research. I haven’t been able to work all summer so I’m already behind…..I don’t know how this is going to work out, but I’m grateful that you wrote this post and made me feel a bit less alone.

  7. Wow, I just got really angry reading this. I am sorry your university treats you so badly. The combination of not getting any salary during medical leave, not being allowed to work even if you sometimes might feel well enough, AND also having to pay a fee (?!), and being in debt for student loans is just absolutely mind-boggling to me. And then maternity leave is paid? What kind of sense does this make? Does this really hold up legally? I mean, there must be people who can only work, say 40% because of a medical condition, permanently. Can people like that not get a PhD, i.e. 40% PhD salary combined with the kind of support that disabled people probably get in your country as well, and have all deadlines extended?

  8. Pingback: Taking a medical leave | Gravity's Rainbow

  9. Maternity leave is not covered for graduate students at all but a few campuses. I wanted to take maternity leave but ran into similar issues – no pay for the semester (which for a financially unstable grad student is not going to work), no health insurance (also not OK for someone pregnant or with a medical condition like yourself – imagine losing your health insurance to take medical leave!), and no extension on deadlines. Some of us, a combination of young parents and some with medical conditions, tried and failed to get our U to institute paid short-term leave for students for maternity or paternity leave, and also medical leave and family leave to care for an ill family member. As was mentioned by a previous commenter, there are a lot of parallels. Fortunately some campuses are leading the way in terms of management and who should pay for it, so there are some different models out there.

    • I hope your efforts will come to fruition for someone in the future, even if they didn’t help you. People today have been helped by people in the past agitating and fighting in various ways … they may have thought they ‘failed’, but we reap the benefits. We should be proud if we at least try to make things better, hopefully those who come after us will remember us and say a little ‘thank you’ and then go and agitate for even better conditions.

  10. I’m sorry you’ve had such a hard time. Graduate students with chronic illness are invisible on campus. Disability Services Staff are used to dealing with under grads who can follow a fairly simple formula for their needs. The only way you will get direct support and help from them is if you go in and request a specific accommodation. You will need to base it on a “functional limitation” that is clearly documented for your disability. The progressing and remitting types of illnesses are the hardest if your DSS staff aren’t able to think critically and creatively themselves. My advice, based on 17 years in DSS, and having completed a PhD myself is that if you want to approach them again, you go in with a direct list of your needs and requests. Tell them you want additional time in your program (now, tell them that before you are in your last permitted quarter). Tell them you want flexible work hours and locations, or whatever else you need. You said you “lost” 200 days last year, so ask for a pro-rated extension on your program deadlines. Ask for things that are time specific– like sitting for your comp exams, to be done within a window rather than on a specific date. Instead of “Ill take comps on March 4th, say I’ll take comps during the week of March 4th. But only do this if you can KNOW that one of those 5 days you will be well enough to take them.

    Spend this time “off” thinking through what you actually need to have in place in order to finish. Then request it very directly.

    • This is absolutely phenomenal advice. I have to get the ball rolling for going back soon and was dreading my meeting with disability services. I feel so much more empowered now. Thank you so much!

  11. I replied above to a comment, but I have to throw this out there also – recognizing that grad students, postdocs, and other academic workers are just that – WORKERS – is a huge part of this. We as a community can make a big difference in how the system affects our fellow academics. UC postdocs have made huge strides through the postdoc union (UAW5810 – This is an under-appreciated avenue in academia. More and more universities are treating scientists like employees instead of the old model of “distinguished resident scholars”. Academics need to wake up and recognize that their labor has value and should be appropriately compensated. This includes grad students who are busting their hindquarters out there doing both research and teaching! Work counts. Work matters. And if you’re doing labor, you should be organizing and unionizing. This postdoc certainly has seen the power, the strength, and the benefits of being in a union, with basically no downside. Let’s stand together, or as we say in labor: Solidarity.

  12. Pingback: How to do a medical leave | Tenure, She Wrote

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  14. Pingback: Are you prepared to deal with chronic illness? | A Portrait of the Scientist as a Young Woman

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