Lupus fog is real. As I took my morning walk today, a thick fog gradually rolled in across the bay. In a matter of 15 minutes, familiar landmarks vanished. The island across the bay was gone. I knew they these things were still there, but try as I might, I just couldn’t see them. As I drew near, things gradually emerged from the fog. I thought to myself, “That’s how it is with lupus fog.” Your phone number might be hidden in the brain fog at one moment, and as you move through the day, your phone number may reappear, but how to do a simple task becomes engulfed.
Perhaps the hardest part of a lupus fog episode is, that although you have forgotten something important, you still realize that you used to know it. You worry that these lupus cognition problems will never go away and you are terrified that lupus memory problems will get bad enough that you will no longer be able to care for yourself.
At 52, about a year after I was diagnosed, I found that I could not remember how to drive home from places. I would pull the car over and try very hard to remember. Then I would cry for a while. Afraid to call someone for fear that I would lose my independence, I would start driving in one direction and hope to see a landmark that would trigger my memory. I could usually figure out when I drove too far and then would head off in the other direction. Sooner or later I would find my way home. At my next appointment, I told my doctor that I was having memory and cognition problems. I never told him just how bad the lupus fog was. He didn’t seem overly concerned, probably because I wasn’t overly truthful! He chalked it up to age. My family felt the same way. I began to doubt myself which made the fog even worse!
My lupus memory problems could have had a systemic origin. My lupus fog could have been caused by the generalized anxiety that comes along with living with chronic illness. Depression certainly plays a part in forgetfulness. I suspect that the disease, anxiety and depression all played a part. As the lupus improved, the fog lifted. Seven years later, my memory is better than it has ever been.