One of the hardest things about life with autoimmune disease for me is that when I’m in a flare, I don’t feel like myself. And it’s not just that I’m stuck in bed and get cranky.
One of my primary symptoms is brain fog. If you’re not familiar with the term brain fog, it’s basically exactly what it sounds like: you feel like there’s a fog in your mind. You lack mental clarity and your thoughts are sluggish. You can’t focus on anything and your short term memory is crap. When this symptom is bad, I develop aphasia, which means I can’t find the words I want and end up having to talk around them. For example, if I’m trying to say “It’s in my backpack,” I’ll end up saying “It’s in [pause]…… my…………[more pausing]…………… [still pausing while I try to see the word that’s hidden by the fog]……… gray bag [gesturing to indicate straps on the bag],” by which point my wife will have figured out I’m talking about my backpack and go find the thing we were looking for.
Brain fog is incredibly frustrating. I feel distant from everything happening around me. I can’t really participate in conversation, because my mind can’t keep up. I can’t work, because I can’t stay focused long enough to complete a task. I can’t read, because I literally can’t remember what’s happening from one sentence to the next, and I just end up re-reading the same sentence over and over.
In short, I can’t think the way I usually think. I can’t talk the way I usually talk. I can’t do the things I usually do. I feel cut off from the world and from myself. These symptoms are unpleasant enough when they’re mild, but when they’re severe, the experience is miserable.
My wife and I were talking about this one day, and I was saying how frustrating it is to just not feel like myself. She understood what I meant. And she said an incredibly helpful thing in response: “You always seem like yourself to me, even when you’re feeling awful. I can see your kindness and your sense of humor. You’re always in there.”
Knowing that she can recognize me when I can’t recognize myself because of my illness has offered me an unexpected freedom. It has encouraged me, instead of fighting my body during flares, to let go a little and let it be what it will be. It’s not that I don’t feel rotten, or that Beth is in denial about my limitations. But knowing that she can see me even when I’m lost in the fog helps me trust that I’ll make it back home—back to feeling like myself—and not be so afraid that this will be the time I disappear forever.
I come back to her words when I can tell I’m headed for a flare, when I’m feeling foggy and frustrated. I’m not sure she realizes how important they have been for me. They helped me understand that instead of hiding from the world when I’m sick, afraid that even the people closest to me will find me intolerable, what I need is to lean in to those relationships—to rely on the people who can see the spark of myself that remains, even in the densest fog.