You’re right, I haven’t responded to your email yet.

And, yeah, okay, some of the reason might have to do with poor time management or me purposefully avoiding you or not caring or something.

But.

Last week I spent eight straight days throwing up, and I haven’t the faintest idea why. (Welcome to chronic illness: unless it’s going to kill you, you stop caring why something happens.)

This week I am dealing with nerve pain so bad that I am crying. The pain medication that I have to take in order for “crying” not to be “screaming” makes me incredibly nauseated and very foggy.

Students get my first priority. If I’ve made a commitment to a student, I’m going to do my damndest to follow through or to find someone else to step in. The fact that some don’t understand this says more about them, and about the state of academia, than me.

The job that pays my bills gets my second priority. Even if it didn’t, my supervisor is an amazing person and therefore she is top on my “try not to disappoint” list.

Doctors appointments, a phrase which for me includes therapy, are non-negotiable. I’ve totally edited thesis chapters from hospital beds, and if it’s for something routine I’ll try to do Science via my phone from whatever medical establishment I’ve landed myself in this time, but for the most part if I’m currently dealing with doctors, I’m not dealing with you.

My medication is also non-negotiable. Once I take my evening meds, I won’t be able to Do Science for the next 11 hours. I am alive solely because of these meds.

I’ve been told that I’m not sufficiently motivated, that I’m “not ambitious,” that I should just work harder. That’s like trying to tell gravity that it shouldn’t apply. No matter how awesome I once was, everyone has limited. Everyone has a breaking point. The fact that chronic illness broke me — but, by the by, my shitty childhood didn’t — is not a statement about me but instead a statement about my illness.

I’m still a fantastic academic. I’m a world-class researcher, a great writer, an award-winning speaker, a caring and effective teacher. If I can’t fit the life of an academic into my physical limitations, then so be it.

But yelling at me for not being at your beck and call, for not dropping everything and immediately solving your problem just because you say I should? Yelling at me is not going to get you anywhere. Yeah, I don’t always instantly answer email. By all means, follow up; I’m an incredibly organized person, but, hey, maybe I did miss your email, it could happen. (More likely, you forgot to send it, but that’s not get into that…)

But you’re never going to be scarier than my illness. You’re never going to motivate me more than a 10/10 on the pain scale. And if you have some compassion? Then maybe when I’m feeling a bit better I’ll be more willing to work on your project rather than on the dozens of other things I could/should be doing right now.

I did not march this weekend.

As you’ve probably heard, there was a March for Science on Saturday. Many marches for science, actually, all over the world. There was a small one in the city that I work in, as well as a large one in the closest Very Large City.

As it happens, I’ve spent the past four days throwing up for reasons that are apparently not chronic illness related — I think I just have a stomach bug. It’s a convenient, ready-made excuse.

But the truth is, I probably wouldn’t have marched. I didn’t attend the International Women’s March, nor have I attended a number of other recent marches to do with the politics of my current host country.

There are a number of people who didn’t attend their local science march because the central DC March really screwed up diversity outreach — I respect this choice, though that’s not my reasoning. There are also a number of people who didn’t attend their local science march for the opposite reason, that they think the marches were too political — I have zero respect for this choice, since science is “political” whether you want it to be or not. (Let’s start with the fact that most academic science funding comes from government bodies, move on to the extreme partisanship in the way science is treated in the US, then take a cold hard look at the lack of diversity in the current scientific community.) (There are of course less alienating ways to frame this objection. Objecting to a march because it is too divisive is fine. But denying that something is “political” is, frankly, baffling. I wish everyone agreed on my right as a queer woman to get married. I wish that everyone agreed on my right to access healthcare. I wish that everyone agreed on my right as a woman to be paid the same as a man. But these wishes don’t make it so — these things are political whether I want them to be or not.)

Instead, I do not march because I am exhausted. I cannot stand for long periods of time without passing out. I suffer from relentless, bone-crunching fatigue. If I expend too much energy, I end up in real, serious pain, and taking medication to alleviate that pain only prolongs my recovery time. I am epically behind on work; my partner wishes she could have more of my time/attention; I would be healthier if I were able to cook or (gently) exercise or take better care of my mental health. On the Saturdays when I’m not endlessly throwing up for mysterious reasons, I have priorities that unfortunately outrank activism. Am I selling out? Absolutely. But before you judge me for selling out, please remember that my costs are different from your costs.

Disability advocacy is hard; by the very nature of our disabilities, we are ill-equipped to stand up for ourselves. This is true of other groups as well; women do far more academic service work than men, especially women of color (good summaries here and here). We’re expected to mentor more students and junior colleagues, especially students/colleagues belonging to our minority groups; we’re expected to spend time advocating for ourselves and training other people on how not to be jerks; we’re (sometimes) invited to things in the name of diversity (and then told that we don’t belong there, because diversity). We have to be better, faster, smarter, to fit more hours in the day, to do all the things that others do and then some.

As I said, it’s exhausting.

#criptax

Some of my disability / chronic illness friends are currently tweeting* about the #criptax.

Basically, the idea behind #criptax is that disabled people pay, monetarily, a much higher cost than non-disabled folks, often in ways overlooked by society.

To throw my own hat in the ring:

  • Salary. I’m currently on an 80% contract, because that’s the amount of functionality I can guarantee, especially once you subtract time for doctors appointments and therapy. So that’s 80% of another postdoc’s money, right off the bat.
  • Therapy. I spend twice as much on therapy as I do on food. Between what it costs and the time/energy I have to take out of my day, it’s a full day’s wages, each and every week. Most days, I understand that it’s important for me to take care of my mental health. There were times during my PhD, though, when I was flat broke, that I was going to therapy only because both my best friend and my partner informed me that they wouldn’t talk to me unless I swore that I was regularly seeing a professional, and I resented the hell out of this fact.
  • Food. Most days, I don’t have the energy to cook, which means I either eat very unhealthily or very expensively.
  • Housing. Between problems with balance and problems with vision, I can’t cycle, and I certainly shouldn’t be driving. This limits where I can live — and, surprise, areas within walking distance or easy public transport of major universities are not cheap. Thanks to my disability, I’m also hardly the ideal roommate — I’m hypersensitive to noise and to smells, I have a really odd sleep schedule, and I get pretty control-freak-y when I’m stressed. I also throw up a lot. This year I’m living alone and it’s amazing — I never again want to live with strangers — but it’s also very expensive.
  • Transport. Taking the bus or a taxi when healthy!me could walk or cycle. Paying more money so that I can fly or take trains at times of day that work for my medications. It adds up.

And I live in a country with socialized medicine! All of my visits to people with medical degrees are completely free, I pay a flat annual rate for prescriptions, and I don’t take that many over-the-counter medications. I also don’t have to worry about battling insurance companies, and I’m lucky enough to have a boss who’s flexible enough to accommodate my disability without me having to deal with any of this officially — the administrative time lost by most disabled people is huge.

Anyway, the point of all of this is: having a chronic illness is expensive. We pay with our time, our money, and our energy, just to exist.

* Should I get on Twitter? On the one hand, really great disability-in-academia conversations going on there. On the other hand, I already run three Twitter accounts (two professional organizations that I represent, plus my own name, which let’s be honest is mostly politics these days), and that already seems like Too Much Twitter.

Things I am currently stressed about, in no particular order

  1. My pain has been increasing recently. This both sucks in the short term (I have things to get done!) and is worrisome in the longer-term (what if this is more permanent?).
  2. I still haven’t decided what to do about these new meds. Are they helping my pain? Hard to tell. How much less anxious would I be if I got off them? It’s been two months, the anxiety’s become normalized, it’s hard to tell. How much should I be caring about the fact that they’re really screwing with my memory? That’s such an existential question, and mentally healthy me doesn’t do existential questions.
  3. I’ve been told by two therapists in a row that we “aren’t a good fit.” Rejection sucks. And it’s a waste of time, of money, of mental energy…
  4. It’s been a week and I still haven’t heard any more about my “informal job offer” and this is making me antsy. I’ve gotten rejected for two more jobs in the interim (one that I thought I was a good candidate for, another one where they re-opened the search, ouch). While I know that the academic job market it tough, particularly for foreigners, particularly for someone whose CV is sprinkled with holes and red flags, rejection’s still hard.
  5. A collaborator whose opinion I value is getting very stressed about some data version control issues that we’ve been having. Which I absolutely get — the data’s messy and it’s mostly my fault and it’s a high-stakes situation (time crunch, Big Name Publication, her professional life’s a bit overwhelming, this project is massive and basically everything about it except me has sucked and now I’m sucking and that, well, sucks). But, like, when I screw up it’s a Big Deal but when she screws up everyone just shrugs, and I’m getting a bit sick of the double standard. Also a bunch of people get CC’d whenever she tells me off for screwing something up and it’s like…seriously? You couldn’t tell me off in private?
  6. Two separate collaborators want analyses that I’ve promised them and have I done these analyses yet no I have not.
  7. My supervisor also wants analyses and have I done these analyses no I have not.
  8. My former PhD supervisor decided that last week would be the week that she decided to remind me about all the things that I should be publishing out of my PhD and it’s like…yes, I’m aware of all of these things…
  9. The fact that I have so many unfinished projects and am not finishing them is starting to look less like an unfortunate situational coincidence and more like a character flaw and it’s like, damn, what exactly am I supposed to do about this??

Twitter is making me angry today, and I can’t say why under my real name.

If you’ve checked science/academic Twitter today, you’ve probably noticed that an anonymous account has managed to explode our little corner of the Twittersphere.

I won’t give him a bigger platform than he has already, but in short, a bitter early-career professor who has taken to Twitter to vent about undergrads has said some extremely nasty things about his students, including his students with disabilities.

These tweets have struck a nerve, and it turns out everyone on Twitter has an opinion, from “ugh kids these days are so whiny” to “yo, our students are adults and are deserving of respect” to scores of disabled students sharing their horror stories about how they’ve been pushed out of academia by professors like this man.

I have occasionally thought about what my life would have been like if I had first gotten sick during undergrad, rather than grad school. In many ways, grad school’s a great time to get a serious chronic illness; I basically disappeared for a year, and nobody noticed or cared. Being a healthy undergrad is hard; having a chronic illness is incredibly hard. Being a disabled undergrad? Eek. Reading these heartbreaking and enraging threads on Twitter, it’s really driving home to me how screwed up our system is.

Because here’s the thing. I was one of the top undergrads at my Very Fancy University in my year. Not just in my subject — I was indeed the top student in my department — but across the entire sciences division. I won a Very Fancy Independent Fellowship to fund my PhD. I have perfect scores in various standardized tests. Yes, tests, plural. I also come from rural middle of nowhere, and while I own’t deny that my background includes a lot of privilege, it also includes a lot of hardship. I am a hard worker, and I am smart, and having a neurological disorder changes neither of these things.

But yet, reading these stories, it’s clear that my chronic illness would have prevented me from succeeding in, if not finishing, my undergraduate degree. During the year between when I first started showing symptoms and when I was finally diagnosed, I wouldn’t have been able to access the resources of the disability office, which means my “accommodations” would have been at the mercy of each individual professor. And it’s clear from Twitter that this wouldn’t have gone well. Even today, when my symptoms are reasonably well-managed, there are days when I can’t stand up without passing out, when I’m in too much pain to move, when my medications make me throw up for hours on end — as an undergrad, how would I have managed mandatory attendance policies? What would happen if I had to miss an exam? Or for another example: I can’t stand up for long periods of time — how, exactly, would I have done my required laboratory classes? Or, for another one of my classes, a class which I absolutely loved and which inspired the research that became my PhD — there was a weekend field component. The field component wasn’t graded and wasn’t part of the exams, but attendance was still required. Between my balance issues, my vision issues, my fatigue issues, and the fact that my medications have to be very carefully timed, there’s no way that I could have participated in the field component. Could I still have taken the class?

And if I had said to these professors, “hi, I have this neurological disorder, here’s what I need from you in order to succeed in your class,” if I had gotten back an answer of “well, then, you don’t belong in science,” an answer so many people are giving on Twitter today, what would I have done? I was a fairly insecure undergraduate, a queer woman from rural middle-of-nowhere looking around at straight, white men from rich, posh, urban places. I had, and to some extend still have, pretty substantial impostor syndrome, convinced that someone had made a mistake in letting me into this Very Fancy University. Would I have believed these powerful professors, experts in the field I was so desperate to enter, and switched my degree to something less demanding, or even transferred to a less prestigious university whose students’ backgrounds more closely matched my own?

Maybe.

Moreover, the university where I did my undergrad is well-known for being pretty terrible when it comes to mental health, something that I struggled with during graduate school. (Surprise: severe, chronic pain + serious, incurable diagnosis + all the normal isolating shit that comes with being a foreign graduate student = poor mental health.) Whereby “pretty terrible,” I mean that if they suspect you have a mental health problem, you are suspended from the university with essentially no notice — which means you lose your health insurance, your housing, your visa if you’re a foreign student, your access to anything on-campus (like, say, your academic and social support networks), and so forth. To be reinstated as a student, you have to re-apply, and the process is draconian and can only occur once a year. And I’m not just talking “danger to yourself or others” mental health problems. I’m also talking, say, eating disorders.

So, students lie, and they don’t get the help they need. Would I have done that? Would I have even survived that? (Some don’t survive. Surprise: incentivizing students to lie about their health doesn’t work out well for anyone.)

The accommodations I would have needed as an undergraduate would not have been unreasonable. Flexibility when it came to deadlines and exams. Exemptions from attendance requirements. A way to do laboratory requirements while seated and a discussion of whether unexamined, ungraded field trips were actually a necessary part of a particular course. Clear requirements about what I had to disclose and an expectation of privacy for the information I did disclose.

You want science to be filled with the best and the brightest, right? Then please remember that not all scientists need to be able to stand up for long periods of time. Not all scientists need to be able to function in the early morning, or late at night, or on a regular schedule, or whatever else it is that you’re trying to force your undergrads to do. Not all scientists need to have had their life and their physical and mental health completely together from ages 18 to 22. Not all scientists need to be able to jump through arbitrary hoops that you put in place to make yourself feel powerful.

Your students are adults. Please respect that. You don’t know, nor can you tell, nor do you need to know, which of your students are homeless, which of your students are suffering with a serious health condition, which of your students are dealing with an abusive situation at home. It is your job, as a teacher, to create an environment which is conducive to your students’ learning, and that means all of your students. Sometimes creating an environment maximally conducive to learning will involve laying down the law — hey, boundaries are really great things! — but if “laying down the law” is your primary goal, I think you’re doing it wrong. Try respect. Try compassion.

I maybe have a job. Maybe.

My current position only lasts a year. (It’s a visa issue and oh boy does everyone involved wish I had the legal right to stay in this country.)

When you’re a postdoc on the job market, you apply for anything and everything. Last year I learned from some of my mistakes — I had both aimed too high and too broad — but I was still expecting a long, stressful process.

But, um, looks like maybe not. Job application #4 turned into interview #2 has turned into “informal job offer” #1.

Now, on the one hand, this is weird. I am not a good candidate for this job. Yes, it’s in my field, broadly defined, but this PI was asking for some subspecialities which I clearly don’t have. And yes, I wrote some BS in my cover letter about being able to quickly pick up those skills, but this PI should be able to have his pick of postdocs; he should be able to find someone who already has those skills, not someone who will have to learn those skills. Furthermore, between having a serious chronic illness and the fact that my PhD pretty much sucked, the recent portion of my CV is terrible. I am a walking, talking red flag. Yes, I am very good at my current job, and I was very good at my old job, but he’s considering hiring me to do something else entirely. Objectively, it’s very odd.

On the other hand, assuming this job actually materializes, it would be two more years of employment, as a postdoc, in a country with socialized medicine. I’m not the most excited about the project, but I do have a relevant skillset, and I’ve asked around — this PI checks out both professionally and personally. It would mean living farther away from my girlfriend, but not absurdly so, and we’re both okay with some long-distance. It would mean that I can stop spending time applying for jobs, stop spending energy worrying about jobs, channel that emotion into resurrecting my CV and spending time with my girlfriend while I can.

I talked to my current supervisor, and she thinks that I should take it. (This was a really good conversation. Having awesome supervisors is so great.)

Possibly relatedly, given the stressy tone of this blog post, I’ve decided not to go off the anxiety-inducing Wonder Drug, at least for now. I like being in less pain. I like having more energy. Is anxiety an issue? Sure. Should I be concerned that this anxiety is becoming increasingly normalized? Probably. I’m seeing a new therapist tomorrow; we’ll see if I click with her.

I’m also aware that I haven’t had very much social interaction recently. I’ve been alone in my office for most of this past week, and my girlfriend and I weren’t able to see each other over this past weekend. (Chronic illness with severe fatigue issues -> not much opportunity to make friends outside of work.) I’m one of those people who gets really unhappy without regular human contact; isolation and its toll on my mental health was a major problem during my PhD fieldwork. I think/hope I’ll be happier when my officemates get back from their various travels?

I guess my point is this: sigh. Why can’t life be easy?

How bad is the end of a PhD? Not that bad. It’ll be okay.

One of the PhD students in my group is in the throes of “thesis crunch time.” Another student is looking at her timeline and beginning to despair. They are looking to the postdocs in the group and asking us “how bad was it, really?”

How bad were the last few months of my PhD? Golly, it was bad, but that wasn’t the PhD’s fault.

I was flat broke. (Chronic illnesses are expensive, yo.) I was stringing together as many part-time jobs as my health and visa allowed, trying to pay rent, to pay for therapy, to pay for medication. I was juggling doctor’s appointments and medication side effects, trying to keep my physical health in check, trying to keep my mental health in check. I was applying for jobs, going to job interviews, not getting jobs, stressing out about the fact that sometimes job interviews don’t reimburse you for travel expenses and they certainly don’t reimburse you for the loss of a day’s income.

Also, my PhD supervisor and I weren’t exactly getting along. Part of me was wondering what would happen if my supervisor sabotaged my degree and I failed my defense.

Around this all, I would write. A bit here, a bit there. My supervisor was refusing to read my chapters, but my friends and collaborators did, and their feedback was all really positive. My examiners both knew what was up, both medically and supervisorially, and I knew that they both liked my work and liked me as a person. Even though it was bad, there was reason to hope.

Then I got hired in my current job. That afternoon, I quit my part-time job, and I went into crazy-writing mode. Two weeks later, my thesis was handed in. (What did I do to celebrate? Hopped on a bus, went to a doctor’s appointment.) I worked as a research assistant between the hand-in and the viva, passed my viva with no corrections, and started work as a post-doc the next day.

Not to be a walking cliche, but having a chronic illness really does put life into perspective. Sometimes there would be moments of moments of bitter irony. Once, during my PhD, I sat down to have lunch with a friend, asked her how her day had been. Awful, she said. Her paper had been rejected from a top-tier journal. Her life was over. 

My day? Oh, um, well, I had spent the morning at the hospital, and the doctor had told me that surgery wasn’t a viable option, that what I have was incurable.

(Protip: incurable diseases are conversation killers.)

Or, same friend, different lunch, complaining about how hungover she had been over the weekend, how a fun evening of binge-drinking had resulted in various vomited-filled escapades.

And me? Well, yesterday, I had gotten radioactive stuff pumped into my veins and had almost thrown up on the nurse, so I could relate, right?

(Radioactive substances: also conversation killers.)

My point is this: you’ll make it. PhDs are tough, but they can be vanquished. Take a deep breath. Take a walk. Spend some time with your partner, with your dog, with a hobby. See a therapist, do some yoga, turn off the internet, do whatever it takes to keep your head on straight and get the damn thing written. Break your to-do list down into little chunks, and if that doesn’t work, break it down into littler chunks.

There’s a light at the end of the tunnel. It’s okay to be okay.