My diagnosis journey

I was officially diagnosed with fibromyalgia on November 27, 2017. It was the culmination of a long semester full of frustration and self-loathing. In many ways getting the diagnosis was just the start of the journey, since now that I knew what I had, I had to figure out how to manage it. I feel that I am finally making headway on that, over a year later.

Image may contain: Rachel Luchmun, glasses and close-up

This picture was taken on the day of my diagnosis at the doctor’s office while waiting for the rheumatologist to come in. I was wearing a full face of make up and a professional-looking dress. I look at that picture and I try to find evidence of how incredibly exhausted I felt. Of course there’s really nothing there, because fibromyalgia is an invisible illness. There was really nothing wrong with me except an unrelenting fatigue, a fatigue that no amount of sleep would conquer, a fatigue that usually put me out of commission by mid-morning every day. My mind was foggy and I could hardly comprehend the work that was in front of me. The field work I had to do sapped all the energy out of me and my brain felt like it was filled with thick cotton. But there was nothing wrong with me, so I pushed and pushed and pushed through until something had to give.

Continue reading “My diagnosis journey”

Reflections on accessibility

I have been in more pain over the last few days, and while I am grateful that this mini-flare seems not to be affecting me cognitively (because I am working on a manuscript while also starting my PhD fieldwork), the increased pain does cause some issues.

The first is that I absolutely cannot sit in an office chair for long periods of time. I do have an adjustable chair in my office as part of my ADA accommodations, and have invested in a fancy chair for my home office, but I simply cannot be spending hours just sitting. Powering through that pain makes it worse later. I tried today, and am currently curled up on the couch typing up this post on my phone. Yay technology.

This pain also makes using my fingers/wrists difficult. I’ve invested in an ergonomic mouse and so I can still get work done, but there are everyday things that I just cant really do anymore. Much like it takes a bad cold to make you realize how much you take regular nose breathing for granted, these things are so mundane that you wouldn’t really think about them – they are using chopsticks and shuffling cards. For some reason the minute movements needed to grasp at and manipulate chopsticks or decks of cards is just too painful to willingly do.

The solution to the first one is to use a fork instead, although that is a cultural faux pas that can be tough to navigate. I’ve seen the judgy stares from some people. I don’t care. Asian food is just as delicious with a fork. And I’d rather use a fork than try to power through and hurt myself.

For the second thing, it’s more complicated. Depending on who I am playing with, I can usually ask them to shuffle my cards for me. My wonderfully partner Marc, for instance, will always shuffle during my turn when we play cribbage together.

You can really only ask something like that from someone who you trust. I know that “I’m in too much pain to shuffle cards” sounds really strange, especially when there is nothing outwardly wrong with me. I don’t wear a splint on my wrist, nor am I in a cast. It’s called an invisible disability for a reason.

Marc also shuffles for me on the rare occasions we play Magic: The Gathering (MtG) together. This card-based game is complex and requires a fair amount of shuffling, which I simply cannot do. I recently (about 6 months ago) started playing MtG through Arena, MtG’s pretty online platform. Playing online has a few advantages for someone with my disabilities. First off, of course, no shuffling! But also, because it’s an online format, it’s easier to read all the card descriptions and figure out what cards I can play during my turn. Some of the nitty gritty is taken out so that I can focus on enjoying the gameplay without having to try to read my opponents cards upside down or do mental math.

When we talk of accessibility, we often think about going places or doing productive tasks. For me, especially over the past few days, I’ve had to try to make the enjoyable things in my life accessible to me.

The difference a good doctor makes

Read enough stories about fibromyalgia, and you’ll know that patients often face many obstacles to diagnosis. Some take years before a doctor takes them seriously enough not to dismiss their symptoms. This is because some doctors are not informed about fibromyalgia, sure, but also sometimes because doctors believe fibromyalgia isn’t real.

I have been very lucky to have an amazing doctor from the get-go. She and I get along wonderfully, and since I see her once a month that is NECESSARY (yes, I see her more often than some of my friends). She has always taken the time to listen to my concerns and explain to me her rationale for prescribing medication or suggesting visits to other specialists. She also still very much listens to me and how I think my body is reacting to medication. I still think of her as an authority, but she has really worked to make sure I have some sort of agency over my treatment as well.

Finding a good doctor can be hard work, but it makes ALL the difference. I have someone in my corner who can help me navigate my symptoms and keep encouraging me to make the changes that will make my life better, while also being realistic in what my life can be like with this condition.

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!

Choosing to disclose

Toward the beginning of this blogging journey, I wrote a post about nailing an interview for an internship (and how that was the only thing I could stand to do that day). I am now around halfway through the internship, and throughout this time I have struggled over whether to disclose that I have fibromyalgia.

There are many considerations over whether to do it or not. They are, in no particular order:

  • I am only at this internship for 16 weeks, and only work there 10h/week
  • I can’t think of what accommodations they could give me to make my work easier
  • I don’t want to come across as though I am attention-seeking or seeking sympathy or special treatment
  • I am already exhausted thinking about having to explain to them what fibromyalgia is and how it affects me and my working abilities

On the other hand, telling them might provide some context as to why sometimes at the end of the day I am almost unable to hold a conversation (because my brain is foggy) and why I take many very short walking breaks (because I am in pain from sitting too long in the chairs they have).

I am leaning toward not disclosing in this situation, but I have similar thoughts when trying to figure out whether it is appropriate to disclose my disability in other situations. Do I need to mention it on job applications? What about academic conferences? Sometimes I need to walk with a cane because my hips are agony, and sometimes I am fine — do I disclose and then use accommodations I don’t need, and then am I stuck in having to “perform” a disability I don’t have? Do I not disclose and potentially needlessly suffer?

It was a straightforward decision with members of my PhD committee and with my work supervisors. I am around this group of people long-term so it makes sense to let them know how fibromyalgia affects my work, and to request workable accommodations from my job. But more the shorter-term things, I usually don’t have the emotional energy to advocate for myself. It doesn’t feel like a good trade-off if it’s only for a short while.

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.

Surgery and fibromyalgia

There are many problems with having a chronic pain condition. The first one is that it’s hard to differentiate between regular pain and fibro pain. The second is that usual guidelines for things like recovery times are not written with you in mind.

On January 24 I had my first ever surgery to remove all four of my wisdom teeth. I was finally in a place where I could afford to see the dentist, and had known my wisdom teeth needed to come out for a while. I sought out a practice that was done for valuing patient comfort, and even though I was told my surgery would not be straightforward given the growth and position of my wisdom teeth, the dentist assured me that he was absolutely confident he could get it done and everything would be fine.

They told me patients usually can get back to work after three days, and let me tell you right now that if you have fibromyalgia, “usually” doesn’t apply to you. After a year of living with this diagnosis I was pretty confident that I would need more than just three days to recover. I talked to my doctor who confirmed that I should count on at least a week.

It was frustrating to have to try and plan my busy grad school life around a one week recovery, and I could only manage four days and then a day of working from home. What was more frustrating, though, were the myriad well-intentioned people who assured me that I would be back to normal within a few days. Drawing upon their own experiences, they knew that they hadn’t been out of commission for that long, so I shouldn’t be either. It was meant to be reassuring but it also made me angry. Assuming that my disabled body reacts the same way as your abled body just ends up putting a lot of pressure on me . Will you think I’m lazy, lying or not trying hard enough if I end up needing more time to recover?

The week following my surgery was very uncomfortable, sometimes spiking up into the agonizing… and I could not tell whether that was normal or not. Were people who had four teeth cut out of their gums (including sutures) supposed to be in this kind of pain, or was this fibromyalgia making the pain worse, or was the pain a symptom of something going terribly wrong? Did I have a dry socket necessitating a trip to the dentist for relief, or was this normal remodeling of the mouth, or was it just my body going haywire at the trauma and sending me into a severe flare?

It turned out that my healing was spectacular, to the point where the dentist appeared a little impressed at how good the incision sites looked. I told him I had been “in some bad pain” for a few days and he gently dismissed it as normal since the mouth was recovering. I don’t think he quite understood the kind of pain I was talking about, and I didn’t really see the point in explaining.

It has been 11 days since the surgery and I am still recovering. As I predicted, I did end up flaring on the Tuesday following the surgery, and still had to power through it to get myself to work on Wednesday and Thursday (Friday was a work from home day, thankfully). I am recovering from both the surgery, since my lower jaw and teeth still hurt from time to time, as well as a flare, and because I took some time off for the surgery I have work to catch up on.

The bottom line is this: if you have fibromyalgia, any kind of trauma to your body (and surgery IS a trauma) is going to be harder on you than on abled-bodied persons. You probably won’t have the luxury to take off all the time that you need. It is going to suck. Plan accordingly.

CBD self-medicating: what worked for me

I am not a doctor. Please do your own research before deciding if CBD is right for you, and talk to your doctor.

I became aware of CBD for chronic pain through an acquaintance who was kind enough to give me a small bottle of CBD tincture to try. This started me on a journey to figure out whether CBD works for me, and also to figure out the most effective way of ingesting it.

This post goes over the products I’ve tried and which ones I liked. To cut to the chase: My favorite CBD products are the vape pens from Select CBD.

(if you are new to CBD, I encourage reading this informative post on the CBD subreddit)

I tried the following products:

I review these products under the cut.

Continue reading “CBD self-medicating: what worked for me”

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.