In the world of academia, I feel like a cognitive tortoise, surrounded by elegant hares.
One of the symptoms I find increasingly challenging to manage, is brain fog. Fellow Lyme disease patients will know exactly what I’m talking about. For those who aren’t so familiar, brain fog feels a little like an alien has invaded your head.
Cognitive processes like thinking and remembering come so naturally to us when our brains are working as they should, that we take it completely for granted. Even I am guilty of this on my good health days. From having complex thought-provoking conversations, to making a shopping list or recalling a story from the day before; when it is easy, it is so easy. Our amazing brains work at incredible speed to help us think, recall, imagine and decide continuously throughout the day without us even noticing. How incredible is that?
And yet, the speed and ease of a well-oiled brain makes it blindingly obvious and excruciatingly painful when the same very brain, the next day or even the next hour, suddenly turns into a pile of mush.
I remember the first time I read about brain fog. I was reading this paper about the prevalence of long-term symptoms in patients previously diagnosed with Lyme disease, so-called ‘Post-Lyme Borreliosis Syndrome’, which I think equates to the term ‘chronic Lyme disease’ often used by patients, the existence of which is painfully denied by many doctors (a complex, confusing and distressing debate that I will save for another day).
I came across this research paper with Forest plots showing the prevalence of persisting symptoms post-Lyme infection. For those who aren’t familiar with Forest plots, they are graphs that show the combined results of multiple studies that all addressed the same question, giving you one overall result from all the previous studies combined. They really are beautiful things. So I was reading this paper, scrolling through the Forest plots of all the different symptoms that had been reported in patients post-Lyme disease. Fatigue was first, no surprises there. Followed by musculoskeletal symptoms like joint pain and muscle aches, again, no real surprises.
And then I scrolled down to this: memory problems, poor concentration, difficulties in formulating ideas, and difficulties in word finding. I nearly jumped out my chair. These were exactly the kinds of problems I had noticed in myself, but I had never really talked to anyone about. Cognitive symptoms, much like fatigue, are so internal and subjective, that it’s hard enough convincing yourself it’s not just all in your head, let alone trying to convince Joe Bloggs or, God forbid, your doctor. So I never spoke about these symptoms because, I’m ashamed to admit, I was afraid of what people would think. Was I really having memory problems, or was I just being a bit forgetful like everyone else? Were those difficulties finding the right words or thinking outside the box really a chronic illness symptom, or was I just having a bit of a dumb day?
When you have unexplained, undiagnosed illness, it really does mess with your head. I have hidden many symptoms purely through fear of not wanting to look like a hypochondriac. If you are trying to convince your doctor that you really do feel terrible and your illness isn’t all in your head, then conversations like “sometimes I can’t think properly” aren’t exactly the best way to go.
So, for years I pushed these cognitive symptoms to one side and convinced myself that they were nothing unusual. And yet this paper showed that all of these symptoms: memory problems, poor concentration, difficulties in formulating ideas, and difficulties in word finding, were reported significantly more frequently in patients who had previously been treated for a Lyme infection, compared to controls with no history of Lyme disease. For the first time I felt like it was ok to admit these were things I struggled with, because the science said I wasn’t alone.
Brain fog is horribly distressing. I will often find myself mid-conversation, in full-flow of a sentence, to suddenly find that I have absolutely no idea what the word is that I want to say next. I know what I want to say. I can picture it in my mind. I am thinking it in my head. But the word is gone. It is as though, suddenly and without warning, my brain has been emptied of all the knowledge I had 30 seconds before. It is unbearably frustrating. Similarly, I often find it impossible to think outside the box, to come up with new ideas, to learn. My brain loses the ability to analyse, to think, to be remotely creative.
These symptoms, on the surface, might sound mildly irritating. But the truth is, they are huge. In the world of academia, I feel like a cognitive tortoise, surrounded by elegant hares. I am constantly doubting myself. Feeling inadequate. Anxious that I might make a fool out of myself at any given moment. And not only that, but it is exhausting. The energy and effort it can take to perform a task that, on a good day, would be completely effortless, means there is little energy left for anything else.
I always try to end my blog posts on a positive note. Like a lesson learned, or a silver-lining to take away. But the truth is, I don’t know how else to end this post other than by saying: brain fog sucks.