Your academic career is not necessarily over

A few days ago, I saw a particular phrase on my Twitter feed.

It was the name of a neurological disorder that I was once misdiagnosed with.

My Twitter feed is about 80% science, 10% politics, and 10% pretty pictures — I tweet under my real name, so I keep generally keep disability / chronic illness stuff off of there. It turns out, though, that someone I follow on Twitter has just been certified to return full-time to her PhD, after taking significant time off to recover from this neurological disorder. As you can imagine, she was expressing a range of emotions about this development.

I know how isolating it is to have a chronic illness during one’s PhD, and most of us aren’t brave enough to talk about it under our real names. This Twitter-er and I haven’t met in real life, but we do follow each other, and we’re in broadly the same field. I sent her an email to say “hey, you’re not alone.”

Since the second year of my PhD, I’ve gotten daily migraines. Yes, migraines. Yes, daily. For about six months during my fourth year, I was hitting 9/10 or 10/10 on the pain scale at least once a week. (For comparison, appendicitis was about a 6/10 at its very worst, and breaking my toe was maybe a 4/10.) (Also, I’m allergic to opiates.) For about half of my PhD, I could only guarantee about 4 hours per day of functionality, in which I had to fit in every single thing that had to be done. Not just research and teaching and supervising and job applications, but also endless doctors appointments and trips to the pharmacy and seeing my therapist and going to the grocery store and exercising and cooking and seeing friends and dealing with my incredibly complicated family. All this nonsense on Twitter at the moment about 40 hrs/week versus 60 hrs/week versus 80 hrs/week? That conversation’s so far removed from my reality, it might as well be about Mars.

And yet, I finished my PhD. I had guaranteed funding for N years and partial funding for the N+1th year, and I finished in N years + 9 months. (Note that I didn’t officially take any time off during my PhD, as that would have lost me my visa, and thus my access to any sort of health care.) And I got a postdoc. A postdoc that was perfect in nearly every imaginable way. (Part-time, awesome research, amazing boss, within weekend traveling distance of my partner.) It is possible.

The PhD student with this neurological disorder told me that she thinks her career in academia is over. And, well, it might be — I don’t actually know anything about her. But the club of successful academics with chronic illnesses is bigger that you’d think. It is possible to finish your PhD. It is possible to get a job afterwards.

If you’re a member of our club, I’m sorry, but also, welcome. Take heart in our success stories. Whatever your goal is, even if it’s just getting out of bed today, I believe in you.

Vertigo, and other symptoms that will screw with your PhD

When people use the word “dizzy,” they typically mean one of two sensations. The first is presyncope, or lightheadedness. Feeling like you’re going to pass out. The second is vertigo, or the feeling of motion. You can feel like you’re moving, or you can feel like you’re staying still and the rest of the world’s moving. Either way, your inner ear is telling you one thing, but the rest of your senses are telling you another, greatly affecting your balance — and your stomach.

During the second year of my PhD, I fell suddenly ill…and then didn’t get better. At the time, it was assumed that I had picked up some sort of weird virus (I was an international student, most of my friends were international students, these things happen) and that this combined with the stress of my PhD had set off mental health issues (not unreasonable, given my personal and genetic history), but one of my symptoms had my doctors scratching their heads: vertigo. Constant, moderate vertigo, occasionally and unpredictably escalating to severe vertigo. And while a lot of things can be faked, even the most skeptical of doctors will admit that nystagmus isn’t one of them.

For months, I was ill, and I didn’t know why. I was put on wait list after wait list, with doctor after doctor being utterly perplexed and then trying to make me someone else’s problem. I was exhausted and in pain and could barely stand up straight and freakin’ losing my vision and things were getting worse, not better. Completely separately from this, my personal and academic lives were both simultaneously imploding. In a fairly terrible self-fulfilling prophecy, my mental health was declining. Life sucked. After several years of therapy, I now know what I should have done, but at the time, I was an foreigner in my early 20’s with essentially no social support system. Things were awful.

As terrible as it is to have a chronic illness, it’s worse to have a chronic illness and not know what it is. To anyone out there reading this without a diagnosis, my heart goes out to you.

If you have vertigo for long enough, eventually you will be seen by an ENT. (Vertigo sucks, but it won’t kill you, and apparently ENTs are very busy people. It took me nearly a year to get an appointment with one.) The ENT seemed to regard me rather incredulously. Yes, I had one symptom under his purview. But I also had 20 others that quite clearly did not belong in his department. Nevertheless, he ordered a test for something I almost certainly did not have, wrote a letter to my GP, and wished me luck.

I indeed did not have this particular vertigo disorder.

The test did, however, reveal the true cause of my symptoms: a very serious, very rare neurological disorder.

(I should have been tested for that neurological disorder basically immediately upon showing symptoms; the reason that I wasn’t is a series of horrible coincidences not particularly relevant to my story. Trust me, if you have vertigo, you [a] don’t have what I have and [b] will have already been tested for this.)

Things happened very quickly after that.

See, there are, it turns out, three types of this neurological disorder. In the first type, you die basically immediately. Since I had been showing symptoms for over a year by that point, I clearly didn’t have that. In the second type, doctors do a bunch of horrible things to you, there’s a chance that you’re fine, but there’s also a chance that after all that horrible stuff, you lead a pretty diminished quality of life for a bit, and then you die anyway.

And in the third type? In the third type, your symptoms might eventually stabilize. You never get any better, but you might not get any worse, at least not for years and years. You take medication to control the pain, the fatigue, the dizziness, the nausea. You take more medication to control the side effects of that medication. You mourn the loss of your vision, of your memory, of your mental acuity. Someday you’ll wind up in the second type or the first type. But until then? You just get on with your life.

So that’s me. After my diagnosis, I was very, very ill for a very long time. But then things started to look up. My neurologists, psychiatrists, and I began to find combinations of meds that actually somewhat worked. Years of therapy started to pay off. I went back to my PhD, finished it, actually convinced someone to hire me as a postdoc. At the moment, I have a partner, a visa, a bank account with positive numbers in it, some papers with my name on them. I’m doing alright.

To succeed in academia, I feel like you need three things: talent, training, and time. I was, if you’ll pardon the complete lack of modesty, a pretty kick-ass undergrad. I have tangible proof of my academic potential. Two very shiny degrees plus some highly marketable skills speak to my training.

My problem is time. Or, rather, energy. My currently contract is 0.8 FTE: 30 hours per week, 6 hrs/day. I work slightly more than so that I can fit in more non-grant work (finishing up papers from my PhD, applying for my next job, working on collaborations that don’t involve my current supervisor), but absolutely most that I can function in a day is 8-9 hours. That’s it. Pain and fatigue and the schedule of my medication don’t allow for anything else.

I see my partner maybe 2 out of every 3 weekends (we work in neighboring cities), and when we’re together we do low-energy things like watch TV and play board games. That’s it. That’s my life. I don’t really exercise, don’t really cook, don’t really socialize, don’t really have hobbies. I, who conned her undergrad institution into letting her take 25% more credits than what was needed to graduate, while working 2 jobs, while leading multiple extracurricular groups, while going running every morning; I, who am full of stories of epic fieldwork adventures in far-off lands, now have days where I consider going to the post office to be an achievement.

I’d make a great academic. It’s what I’m trained for. It’s what I’m good at. I have awards to prove that I’m a good writer, to prove that I’m a good teacher. I can write grants, write code, communicate with members of other disciplines, communicate with members of the public.

I am a part-time postdoc, and I am damn good at my job.

Can I make it in academia?

Let’s find out.

Hello, my name is Jade, and my medication is better than five cups of coffee.

I have never been an anxious person.

People find this odd. They see “young, energetic white female with fancy university degrees,” and they assume “anxiety disorder.” Or perhaps they’ve met my mother and have a basic understanding of how “genes x environment” generally works when it comes to mental health.

But I have never been an anxious person.

I have started a new medication, however. One that might help the pain. One that might help me to function more often, function for longer. One that might allow me to get off some of my other medications, medications that are wrecking my heart and lungs, screwing with my memory, shepherding me closer and closer to the brink of addiction. One that might help to me lose some of the stunning amount of weight I’ve gained in the past year.

(The strong athletic fieldworker is a person of the past, a person who is never going to come back, but it would be nice to be a little less obese.) (If you’re judging me right now, don’t. You know nothing.)

Remarkably, this medication seems to be working well, and I seem to have avoided most of the nightmare list of side-effects that dog the clinic study reports. (The nausea faded within four days and the language issues within eight, the burning sensations I can cope with, and light-headedness is nothing new.)

Except.

Anxiety.

Oh. My. God. Anxiety.

Until this month, I’d never known what was meant by the phrase “crawling out of your own skin,” but now I am intimately familiar with the sensation. From the moment I open my eyes until the second I fall asleep, I am jittery, overly-energized, as though I’ve drunk too many cups of coffee. I sit at my desk and my to-do list overwhelms me to the point of paralysis. My thoughts are racing too fast for my brain to take note of any of them. I still have pretty serious fatigue issues, but I’m simultaneously spectacularly hyperactive. It’s about 1% fun and 99% excruciating.

I’m only at the start of week 3 — I’m still well within the window of “side effects typically fade within the first 2-3 weeks.” Even if the anxiety seems to be an unavoidable side effect of this medication, if I do decide that the decrease in pain is worth the psychic angst, there are things one can do. Anxiety is often treatable.

Hopefully, in a few weeks time, I will look back on this post and wonder why I inaugurated my blog with a temporary side effect?

Anyway, hi. My name is Jade. I am a postdoc with an incurable, progressive neurological disorder. I am attempting to make a career as a disabled academic. Welcome to my little corner of the internet. 🙂