Victory! Officially advanced to candidacy

I’ve been quiet on the blog front lately because I was working on passing my oral comprehensive exam (that is, my prospectus defense). Big presentations are stressful in their own right, and of course stress ends up triggering some fibromyalgia symptoms. For me, it was the fatigue and brain fog, the exact symptoms you don’t want for a presentation. Thankfully I had prepared enough that I went on auto pilot and delivered a good presentation.

I feel very lucky to have mentors who have helped me tailor my dissertation research to something I can manage given my physical limits. I went through a dark period where I felt I could not complete my PhD so it is gratifying to have come this far!

Thinking of my future self as sick

At this point, I am very good at understanding where my energy levels are at and at not overdoing work… in the present. I am not so good at remembering that in the future, I will still be sick. And that’s a problem because a lot of academic work involves looking far into the future.

For instance, call for abstracts for conferences go out months in advance. I need to attend conferences, so I submit something, but months later when it is time for the conference, I could be in the middle of a flare.

Or, a call for book reviewers goes out, and I indicate my interest, and by the time I receive the book and have to write the review, I have three other things going on (since I still work, and am still a PhD student) and, you’ve guessed it, a fibro flare.

This is where I am currently. In March I have two conferences and a research trip, and a book review to get out before then. I also have to work on the brunt of my PhD proposal before March, because I need to schedule my defense before the end of March (!) and I will be traveling so much.

I’m not sure how so many things suddenly piled up in this one month, and I think it is because while I can see myself, in the present, as chronically ill, I can’t do that for the future. I can try to manage my workload, but fibromyalgia is always going to throw a wrench in the plans. I haven’t quite figured out how to do this. I can’t really RSVP to a conference with a “depending on whether I am flaring” condition.

My emergency fibro kit

This is a collection of things that I keep together so that I can easily bring it with me anywhere I go. It’s very small which makes it a lot more portable, but obviously does not include bigger items like my cane (which I usually still have in my bag just in case I need it).

The contents of my kit are:

  • Compression gloves [for when my hands start hurting, or when I get too cold in the office but still need to type]
  • Elbow compression sleeve [because working at a desk with a painful elbow is terrible]
  • CBD balm, lavender scented [the lavender helps with stress; at this point I’m unsure if the CBD balm helps with pain]
  • CBD vape, lavender [lavender again helps with stress; vaping CBD does seem to help with my fatigue levels]
  • Medication spares [sometimes I forget to take my medication in the morning. Having spares means I don’t have to go without for the day.]

Publish or Perish – How Academia perpetuates that your worth is your productivity

If you’ve spent time in academia, you’ve probably heard the phrase “publish or perish.” This refers to the idea that, as an academic, if you do not publish research regularly, your career will die. Academic publishing is supposed to be the gold standard of science: you conduct research, you submit it to a journal, your work gets reviewed by other scientists who critique it, you make the changes they require to bring it up to the required standard, and you have a publication.

Publications build your CVs, which in turn builds your career. Advice I have received as a grad student invariably contain “have 2-3 publications before you get your PhD if you want to stay in academia,” and one of the more useful classes I have taken had a professor emphasizing that you need to think of the publishing potential of all the research you undertake prior to even starting the research.


“Publish or perish” neatly exemplifies the idea that if you’re not doing work, you’re just not doing enough.

Beyond being competitive for the job market at graduation, what you publish and how often also determines your chances at getting tenure, that is a job for life at a university. Tenure is highly sought after, even if studies show that the number of tenured jobs available is decreasing while the number of PhD holders is increasing.

“Publish or perish” neatly exemplifies the idea that if you’re not doing work, you’re just not doing enough. This is so ingrained in academic culture that a slew of memes exist revolving around the idea that “you should be writing.” Even though publishing is supposed to be “good” research, and certainly that is still important, publishing is slowly turning into a quantity-over-quality game. There are so many journals that it is difficult to know which have high standards and which do not without spending time researching them. In theory, again, they should all be going through the same peer-review process, but academic publishing is a business, and papers make money. The recent story about three academics managing to get papers published and accepted for publication, even though they were either made up or preposterous, illustrates that there is something broken about academic publishing.

Even for academics without a disability, this expectation of producing work is brutal. There is a lot of guilt that comes with not doing enough, to the point where it even changes what “free time” entails. There is an expectation, especially as a graduate student, that you simply should not have free time. Every moment of your waking day should be spent in pursuit of your degree.

When you have a disability that affects your ability to think, process information, and get things done, this unattainable standard is even further away. I posted earlier about feeling that I could not use fibromyalgia as an “excuse” because I wanted to be held to the same standard as my peers, and that means producing research at the same pace as they are. And yet, if I produce good research but need slightly more time to produce it, I am not as competitive as others in the field. It doesn’t matter if my research is sound or good; if I am not publishing regularly, I am at a disadvantage. 

Currently, I am working on two manuscripts (research papers to be submitted to a journal for publication). One of them is part of my work, while the other is research from my Masters degree that I am finally getting around to turning into publication format. I am trying to churn them out before the year is over because I want to be able to tell my committee that I am finally on the way to getting something published, after three and a half year as a graduate student. I have accomplished many other things this year, and yet it feels that if I don’t manage to submit something for publication, I won’t have quite done enough.

The pernicious thing, too, is that there really isn’t an “enough.” There are lower limits that you should be hitting, but really no upper limits. Even with no disability, this is not a healthy model.

On Appreciation

This Thanksgiving, social media lit up with a wide variety of gratitude posts. Our celebrations here took a slightly different angle though, focusing on appreciation instead of gratitude.

On Wednesday, Marc came home with a bouquet of flowers to show that he appreciates me. That night, we made an effort to acknowledge each others’ efforts in our relationship and reflect on what we could improve on. It was lovely to feel seen and heard.

In academia, we often must work alongside other academics for periods of time, be they through the long years of the PhD program as your committee members become the gatekeepers of your entire career, or through shorter collaborative research projects. These are all professional relationships, but when you throw something as personal as a chronic illness in the mix, it’s hard to find where the boundaries are.

Clearly, I want to communicate with my supervisors and collaborators that any delays or changes of plans are not due to a personal failing, but are because of an illness I am still trying to grapple with. However, I also acknowledge that they don’t need to be privy to the whirlwind of doctor appointments, new medications and their attending side effects, days of fatigue where even getting out of bed feels like too much, or even days when I have the energy to do work OR to come to work, but not both.

I don’t know that I feel comfortable expressing gratitude to the academic people in my life because of their understanding and patience when it comes to my illness. I mean, should I really be grateful that they are willing to work with me for not being a perfectly healthy human being all the time? Do people experience deep gratitude when they are laid up with the flu and have to delay some things or adapt to do others? Or do they just expect that the other people will be understanding?

So instead of gratitude I want to show appreciation to my collaborators and supervisors who have worked with me in changing things around because of fibromyalgia. It still takes the form of a “thank you” but it changes me from viewing fibro as something that is getting in everyone’s way, to something that gets in my way sometimes but which can be worked with.

I appreciate my academic colleagues for working with me, I appreciate my supervisors for their flexibility, and I appreciate my collaborators for their trust that I will not let them down, even if I have to work in an unorthodox way (such as by taking advantage of insomnia.)

Reclaiming a lost year: words of wisdom from my committee member

  • Grad school is HARD. For years, you are constantly asked to prove to the people around you that you are worth being there. Give yourself some credit to be doing this difficult thing even with a chronic illness.
  • Being forced to take an alternative route to achieve the same research could lead discovering new methods or at least refining existing ones. There is a place for you in academia.
  • Find your support group. Find people who can share wisdom and who can use yours. It’s even better if they’re not just grad school friends. It’s good to take a step back and see the bigger picture away from academia.

These were the biggest takeaways from a wonderful committee member following a meeting. Story below the cut.

Continue reading “Reclaiming a lost year: words of wisdom from my committee member”

Figuring out a new identity: how my diagnosis was received by those around me in academia

When I was diagnosed, I had been with Marc for about 6 months. Our relationship had gotten to a kind of weird funk because of fibro, to the point where he told me that I seemed like I just did not want to have conversations with him anymore (not true, of course — I just did not have the energy to hold in-depth conversations, being barely able to comprehend simple questions like “how was your day?”). Getting a diagnosis was both a relief and terrifying. I had an explanation for what was going on with me, but something was actually wrong with me.

Marc’s reaction was fantastic – he asked me how he could best support me and make my life easier. Reactions from my closer friends – the ones who knew that I was struggling with a slew of symptoms that got no relief – ranged from being grateful that I finally had an answer to wondering what exactly fibromyalgia is.

The reaction from my professors was overwhelmingly positive too. All of them told me to take time to process my new diagnosis and to take care of myself. Even though I had medical documentation that I could offer as proof, I had established a good enough relationship with them that they took me at face value and didn’t question the authenticity of my diagnosis.

The real issues don’t stem from telling people your diagnosis — they rear up in the aftermath, when you are trying to adjust to life with fibromyalgia. 

Continue reading “Figuring out a new identity: how my diagnosis was received by those around me in academia”

Catching up by making the most of insomnia

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My desk. I may be slightly unicorn obsessed.

This was my desk at 5:45 a.m. I’ve been up since 3 a.m. You can add “insomnia” to the list of side effects I started yesterday.

However, I only feel regular-sleep-deprived tired instead of fibro-fog tired, so I am using the opportunity to catch up on work I did not do this weekend with the help of my Chibi Star Trek cup filled with delicious Mauritian tea.

It’s not an ideal state of mind to delve into citizenship theory, but it’s better than nothing. I’ve learned to take the moments of clarity where I can find them.

The frustrations and hopes of new medication

First off, I am annoyed. I am unable to function well enough today to focus on anything, and so the pile of books I need to for my pre-dissertation work remains untouched. I also have many articles logged away in my citation manager, and it feels awful to KNOW I need to work but my mind just feels frayed, like there is a lack of connection between my two brain hemisphere. The most I could do today was finish up and submit an assignment for an online class.

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What today looks like for me: my outstanding reading pile, trying to understand fibromyalgia, and keeping track of my medications and all their interactions.

It’s been almost a year since my diagnosis, and while medication and my own supplementing coupled with lifestyle changes have helped some, my doctor thinks I should be able to make better progress (and I agree! Being debilitatingly tired most of the time is not fun, especially when going through a rigorous academic program).

Continue reading “The frustrations and hopes of new medication”

One thing a day: an interview and then nothing

On the morning of Wednesday October 24th, I had a meeting for an internship at a museum. I had contacted the person responsible, exchanged some emails as to what sort of internship I wanted, and was told that they were excited to meet with me to talk about a mutually beneficial arrangement.

So far so good, except this week has been particularly difficult in terms of fibro fog *.

The previous night, I had to cancel a date with Marc because I was so overwhelmingly fatigued that I could barely form sentences. I had gone to sleep early, had a fitful night, woke up with a splitting headache, and faced the prospect of an interview for a position I was genuinely excited about.

That’s one of the (many) frustrating things about fibromyalgia. It robs you of the ability to fully get excited about something, to deeply delve in what you are passionate about. 

Continue reading “One thing a day: an interview and then nothing”