Really? I’m dedicating an entire post to brain fog?
Yup. Because after I go through all the technical explanations about my (insert whichever chronic illness I am trying to describe here), brain fog—more than anything else—leaves people a bit perplexed.
While one can often scientifically (and laboriously) describe the effects chronic illnesses have on the body, brain fog can come across as more of a general, non-specific term. I mean, look at it. Brain fog. It’s like the name of a slapdash band from the 1980s or something my nephew made up.
Regardless, even while the medical field doesn’t always acknowledge it (though recently I have had more doctors recognize it), and a slicker sounding name might be better (i.e. Cerebrum stuffyconfusa…?), it doesn’t make it, or the massive frustration is brings, any less real.
I have always had a sharp memory. Freakish even. Tiny details of what a stranger was wearing at my brother’s graduation party when I was 6, where a specific bit of information is in a 500-page textbook, birthdays mentioned in passing.
But things are different these days.
More often than I would like, I am in mid-sentence when I completely shut off. Mouth agape, eyes rolling around in my head as I desperately try to think of that rudimentary word. (It’s “door,” Sarah! Door!) Sure, lots of people forget what they were going to say but with brain fog, I forget everything I was saying. Often times, even after I’m reminded of what I was talking about, it takes me a good minute or two to call it back to memory. Additionally, how embarrassing is it when you have to sit there for 20 seconds to recall a word like “door?” “I walked through the…” “Reverie? Time-space continuum? Electromagneticastrosphere?” “Um… no. The thingy that does this: *hand gestures*”
Thankfully my family and friends are aware of this, but when it happens with strangers it can be mortifying.
Similarly, I often forget what day it is. Then I forget what day it is five seconds after I ask what day it is. If someone requests for me to bring them something, I’d say 10 percent of the time I actually remember to do so. I forget doctor’s appointments, responding to email/phone calls from people checking in to see how I am, changing the oil in my car.
(Personal lament: I love words, so it’s always extra fun when, after sending an email, I find I forgot how to spell something. Or, if that isn’t enough, I’ve completely omitted words from a sentence and/or substituted a completely unrelated word. “Dear Boss, I have the book busy today. Thanks!”) Sigh.
Most of the time I’m able to get a kick out of these things, but brain fog can also have more detrimental effects.
I have been taking my medication at the same times every day for years, but there have been weeks where I just completely forgot them. And it isn’t like my routine had changed at all. Work didn’t start at a different time or I was at someone’s house in a different time zone. Things were exactly the same... I. Just. Forgot. Then, of course, because I’m missing meds, my symptoms get worse, which means I get more brain foggy, and more spectacular emails to my boss are sent.
How much water have I had today? It has to have been a couple liters, right? (Try barely a glass full.) Did I forget to send my nephew a card for his birthday? (Damn it.)
I even have to make a note to, “make a note of things to do today.” And don’t get me started on how demoralizing it is to try to sit down and write. I haven’t been able to focus for months.
However, out of all this information, I think this may be the most important to understand: Forgetfulness and brain fog bring about two different kinds of feelings because they are two different things. Sure, I’ve been preoccupied in my thoughts and then found myself trying to remember what I was going to do next; being forgetful makes me feel flighty. But having moments while driving where I honestly cannot remember where I am going, where I am, and how I got there? Brain fog makes me feel frustrated, panicky and confused.
And it’s hard. Transitioning from someone who could remember the weirdest details to someone who now has to think for 30 seconds to remember her 10-year-old dog’s name? When people chalk it up to forgetfulness, it makes it even harder. Forgetfulness comes across as something you can work on; brain fog, just like chronic pain, dizziness, other symptoms, etc., is something you have to cope with and adapt to.
So what can family and friends do?
Please, please be patient and understanding. Chances are we are already ripping ourselves apart for forgetting to get a birthday present for our niece, or not getting the tickets to the movie, or spacing on filling up the cat’s empty water bowl. Also, when we blank out in the middle of the sentence, stay with us and appear engaged. A look of understanding can go a long way in that moment where we feel like complete idiots.
Find a gentle way to remind us. I admit, I’m a bit of a proud person, so I can get a bit defensive when my someone asks how much water I’ve had or if I’ve taken my meds (especially when I’m already frustrated at myself for forgetting). But I need it some days. A designated note-spot by the fridge or on the phone helps for other things. I have a calendar now and write things down in like, eight different places.
Lastly, assure us it’s OK. Being exhausted and not being able to do the physical things you want? It sucks. But, on top of that, forgetting “simple” things, important things like calling your best friend, and just feeling all stuffed up in your mind? That really sucks. So give us a big hug and/or tell us it’s OK when we beat ourselves up about it. We often need to be reminded that we’re not a big ol’ burden even though stuff falls out of our heads sometimes.