My Story: Developing Fibromyalgia in Graduate School

How do you go from knowing exactly what you want to not knowing anything at all?

If my life were a movie, that ought to be its tagline! While it’s scarier from the outside than while you’re living it, it’s not all that pleasant either. For all others who have felt similarly, I hope you find some common ground with my story below and feel some unity in numbers.

It all started in the summer, about two years ago, when I started to feel “slowed.” I couldn’t wake up in the morning, I was perpetually tired, sleep did not refresh me and I seemingly lost interest in all things I cared about. I was also in near-constant pain. I put all of that down to being a graduate student. I had practically been a workaholic for nearly four years until I developed a host of bizarre symptoms. I decided I had worked too hard. Visiting my family over the winter would make for a great break, and I would come back from it refreshed and excited again to do science.

But I did not. I was constantly tired even during my vacation, though the pain was somewhat better, thanks to some medication I had acquired for it. It wasn’t much of a vacation for the most part as my grandfather passed away suddenly that winter. It was a traumatic and stressful time for everybody. I had no time to goad over my physical discomfort, even though throughout the time, it kept growing. I had always found a lot of joy in doing science. During that trip, I felt like I had lost all interest in it. Though I dressed it up as feeling a lack of meaning in my work, I should have seen the signs of clinical depression returning on me. Yet I waved it off, and this time I thought – perhaps I will feel fine and everything will return to normal once I get back to the swing of things at work!

Again, I did not. I was worse than ever. I could barely make it work by noon, and needed to rest on couch by three. Extra coffee did nothing to keep me up. I was desperate for help. The fatigue was debilitating. I was developing more tender points in other parts of my body. And I was definitely depressed. So we decided to switch medication, wondering if prolonged use of the previous medicine were partly the cause of my worsening symptoms. That worked like a charm!

During all that time, I was trying to do research, while spending a lot of time at many doctors’ offices. I racked up some thousands of dollars of medical bills for everything my insurance did not pay for. My doctor thought I was exhibiting multiple symptoms of fibromyalgia and we researched together regarding its diagnosis and management. Basically the diagnosis involved ruling everything else out. So we did that – my tests for lupus and RA and all other overlapping disorders came out negative. Long story short, fibromyalgia it was. Good thing too, because I was already being treated for it by then!

Being forever stuck in the “suck-it-up” mentality of stoicism, I tried as much as possible to not let anybody know of what I was going through. Yet people noticed. It is kind of hard not to when someone vibrant and cheery-faced suddenly declines all company and finds it hard to pick anything up or stoop to the bottom shelf or reach up to a higher one. Eventually, I slowly started to tell people – starting with my boss because I felt he deserved an explanation for my sudden change in movement. At first, he was reasonably supportive, but he is a fast-paced, impatient man in general, who had barely been sick a day in his life. And that worried me regarding my prospects in graduate school with fibromyalgia in the long run.

At the same time, I was also getting used to my “new normal.” I resigned to the fact that I am tired every morning, wake up every day in pain, and will probably not make it to work as early as I used to or be able to stay as late as I used to. So I learned to be more efficient to cope with the lesser time I had to spend at work. I resigned to the fact that I will have to be slower, write things down more so it doesn’t get lost in the encroaching fogginess in my brain. This one took more work because I used to be a fast-paced, impatient person, just like my boss in some ways, and did not like slowing down at first and frequently got mad at myself for it. I had to let go of nearly all my social life and started spending weekends at home instead of working at the lab to cope with the exhaustion coming from simply being out of bed. I took up oil painting as art therapy to cope with several aspects of my chronic illness. Most of all, I realized that a postdoc is probably not in the cards for me, and I wasn’t sure I even wanted a career in academia anymore (or that it was worth putting aside my health for) – and that was frightening, because now I had to find out what else I could do.

I’ll try and elaborate on some of the themes mentioned here in later blog posts. But all in all, this is the story of me going off track from the yellow brick road to academia and ending up pretty much lost in the woods. I feel like I went from knowing exactly what I wanted to do, to not knowing anything at all. And it is going to be a long journey of me figuring out where I can go from here, that will be stimulating for my brain and least traumatic for my body, and I am looking forward to what new adventures it will bring.

I’ll end this by noting vehemently that this story is not to seek sympathetic attention. I do not want the reader to feel bad for me. I am too egotistic to consider my life a tragedy – I prefer to think of it as black comedy, and you will often find me making fun of my own pathos. Having said that, I do feel that there are too many quiet voices out there amongst my graduate student friends, all fighting their own battles, and there needs to be more awareness and understanding amongst academics regarding debilities that Ph.D. students face, and not just in their projects! Not every student who is working slow and coming to work at 10 AM is “lazy.” Sentiments like that are, however, very widespread in academia which makes developing a chronic illness in graduate school a harrowing, and sometimes isolating, experience. So the point of this blog is to simply begin a gentle discussion regarding personal struggles of graduate students as they work towards completing a Ph.D. dissertation, through the lens of my own journey; and somewhere along the way, I hope it lends a hand to someone else who might be in a similar boat.



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