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.
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.
First symptoms: I think I’ve had symptoms of fibromyalgia for a while, but they really became noticeable in the summer of 2017. I started being tired ALL. THE. TIME. I found that going on long walks with my dog, which was one of my favorite activity, started taking a toll on me. We would come back from our walk and I would be out of commission for the rest of the day, begrudgingly forcing myself out for another walk with her in the evening. I chalked it up to the Arizona heat sapping all the energy out of me. It was my first time in the Arizona summer living by myself, and while Marc and I sometimes ran errands together I was still mostly doing them myself – walking or taking public transit in the terrible heat.
A hellish semester: When the fall semester started, the fatigue became even more difficult to bear. I was also starting a new job as a research associate which involved a lot more critical reading than my previous job as a teaching associate, as well as some fieldwork which required all my attention. It was so difficult to keep abreast of everything going on and it made me wonder whether I was cut out for academia after all. Everyone seemed to be having no issues at least reading a couple of articles a day, and I KNEW I used to be able to do that at some point, and yet… I would slog hour after hour trying to comprehend the theoretical underpinnings of papers only to give up and skip straight to the findings. I almost fell asleep at my desk a few times. I started taking shortcuts with my classes, at first picking one class per week where I would only skim the readings, which then became two classes per week, and finally became a frantic skimming of material right before class in an effort to keep afloat. I had to skip classes a few times because I did not have the energy to go to them. I would force myself to be attentive, engaged, and insightful during classes, which then rendered me useless for a day or two afterwards. In fact, it led to this gem in class:
Me: makes some compelling point about the readings
Prof: very intriguing, how do you think it applies to [other scenario/theory]
Me: Could you remind me of what my original point was please?
“But there is nothing wrong with you!”: A couple of times, the fatigue got so bad that I went to the health center on campus for a walk-in appointment. I felt that they took me seriously at first, which was nice, but once all the blood tests etc came back normal the doctors simply threw their hands up in the air and told me it must be stress. Maybe I could try to exercise. Thing is, I already thought that the lethargy was caused by bad diet or lack of exercise, so I pushed myself hard every day. I went and got glasses with an updated prescription. I cut out all sugar from my diet. I don’t think I ate as healthily as I did back during that time when I was trying anything, EVERYTHING to get my life and energy levels back. One doctor kept asking me “what do you want me to do?” after all the tests came back normal. He also casually rested his hand on my knee while saying this, which made me very uncomfortable. I did not go back.
Relationships suffer: At this point it was early November, the semester was ramping up, I was struggling to cover the basic needs for me and my dog, and everyday I was pushing through the kind of fatigue that feels like a boulder bearing down on you, crushing you down. I could tell that some of my friends were starting to distance themselves from me because I simply did not have the strength to reach out to them or engage in the same social activities as we used to. It was isolating but I did not have the strength to keep my social life going, and also felt like a failure for having to be low-key about any potential hangouts. Marc and I had some miscommunications, some struggles, and he eventually told me that he felt I did not want to engage with him anymore, because it felt that I was always too tired to talk. That was terrifying. I had no idea what was wrong with me, the doctors didn’t either, and I could see the important things in my life – my PhD work, my job, my relationships – all deteriorating around me. And I did not have the energy to do anything about it.
Another health concern: In early November another health concern prompted me to visit the women’s health department at the health center. While there, the provider asked me if there were any other health concerns I had, and I mentioned the fatigue and how it was causing my school, job and relationships to suffer. She seemed concerned, and referred me to the rheumatologist who comes to the health center a few times a week. I looked up what a rheumatologist did, what illnesses they diagnosed, and realized that “fibro fog” sounded exactly like my symptoms. Except, fibromyalgia is a chronic pain illness, and I was not in pain.
“Just the baseline, everyday pain that everyone feels”: Due to a scheduling mess-up on the part of the staff, I almost did not get to see the rheumatologist on the day of my appointment — but by some stroke of luck she had a same-day opening in the afternoon. That is where I took the picture at the beginning of this post. We went over my symptoms again and she asked me again “but you have no pain?” I responded truthfully “no” then added “just the baseline, everyday pain that everyone feels, but nothing more than that.” She looked at me as though I had said something very strange.
As it turns out, you’re not supposed to be in pain all the time.
She diagnosed me with fibromyalgia that day, after a few more physical tests (such as poking me in known fibro sensitive spots). She told me there was no cure, but that it was not degenerative, and that we could work on controlling my symptoms.
I lucked out with my diagnosis. I had the right doctor who took my symptoms seriously and recognized what medical specialty to refer me to. It took just a few months from the onset of symptoms so severe that I experienced a sharp decline in the quality of my life, to the diagnosis that fit with everything. As I now know, trying to push through a flare just makes it worse, and I had been pushing through one for months, desperately trying to get back to normal.
Getting the diagnosis is so far from the end, though. It’s the beginning of figuring out your new identity, of figuring out new limits, of perhaps finding new possibilities (that part is HARD). It’s the fear that people will leave because they cannot (or don’t want to) deal with your illness. Or maybe it’s not the illness, but that your relationship cannot survive and adapt to the new terms imposed by your chronic illness. It’s remembering what you used to be able to do and sigh unhappily, wondering how much more this illness will take from you.
But those are all posts for another time.