Dear Colleen,

I’ve followed you for a while on twitter as I love your work and your insights into creative industries.

I have a chronic illness. We’re still not sure exactly what it is as tests are ongoing, but I have a wonderful GP who is moving heaven and earth to help. I know what it might be, and I’ve spent two years in denial about being sick. Strangely, I can live with some pain and some limitations, but the brain fog? The brain fog is what makes this so unbearable.

Reading your tips about keeping things in sight made me realize why I’ve been struggling so much in both my day job and with my writing – I’ve tried so hard to be organized, and then got increasingly stressed when the fog still got the better of me. Having said that, anything clearly in sight on my note board or my desk gets done. Your post has inspired me to try a different way of approaching tasks, and even if it doesn’t work, maybe it will lead me to something that will.

I’m terrified of this illness (not something I ever admit out loud to people I know and love) but knowing that people like yourself, people who I admire, have successful careers in the creative industry despite what chronic illness does to us, is helping me keep navigating the transition from employee to self-employed creative.

I apologize for the waffling – my medication can exacerbate the fog – but I guess I just wanted to say that your post helped me, and I appreciate the tips.

Thank you,

G

(Name redacted at request)

I am so grateful for your letter. Thank you for allowing me to publish it. My most sincere hopes for a quick diagnosis and treatment!

The pain of chronic illness is one thing, but the brain fog is another. If my leg hurts, I can draw. If my mind doesn’t work, I can’t.

Several people have expressed their concern that if their bosses knew what they were going through, they might get replaced or shunted aside. I don’t have an easy answer for this. All people are different, and all people are going to respond differently to this news. Even people who are close to you and care about you may have trouble understanding what you are going through. They will simply be unable to understand that the cognitive disorder is not simple “absent-mindedness”.

One of my close family members, when I was trying to explain it kept responding, “But so-and-so forgets things! But so-and-so loses his keys!” And I repeated, “It’s not a question of losing my keys. It’s a question of blanking on my own name.”

I kinda liked it better when everyone thought I was just a flake, but whatever. Other people are going to do what they’re going to do.

It’s unpleasant to be treated badly by others because you blank on what they are saying or don’t understand what they mean. I can’t count the number of grumpy stewardesses I’ve had to deal with on planes: I stare a moment and try to figure out what I am being told to do and this raises their ire. Traveling can be a real challenge as I have to repeatedly check my ticket and itinerary, unable to recall the gate, the seat number, or where I’m going.

I had a fan at a convention in Connecticut lose his temper because he asked me to tell him what a story in a comic I had drawn in 1987 was about. I couldn’t remember. He angrily declared “You should know your inventory!” and went on a rant. Comics creator Keith Giffen was sitting right next to me with his mouth open. I picked up my chair, turned it around so I was sitting with my back to the angry man, and proceeded to ignore him.

Something to be aware of, too: people who also have health issues sometimes cannot empathize with other people’s health issues. It’s an endless contest of who feels worse. I recall one woman who came to me some years ago, and after hundreds of emails asking for support, thousands of dollars in loans and fundraising, a new job that I arranged for her, etc, when I finally said I needed some time for self care and had to step away for a bit, she blew up at me and flat out lied, saying that I did nothing to support her and “wouldn’t give her the time of day”.

I gave an awful lot of support to someone I didn’t even really know.

Anyway, I have been on new medication for one month. Over the last five days, the brain fog lifted. I have not felt this clarity in years. Still it’s kind of roller-coaster-ish. Today it feels like I have the flu. I understand this is normal as my system adjusts.

Regardless, feeling like I have the flu is still better than brain fog. (An example of my fogginess: it took me nearly a week to call in my prescription update even after writing it down repeatedly, putting it in front of me on my desk, and putting reminders in my day planner. Because it’s not a part of my routine, it’s going to take a lot of time to sink in.)

Another important thing I want to get into eventually is how internet use can work for you and against you. I’ve given this subject a lot of thought, and if you’ve followed my blog for awhile, you can see how I struggle balancing internet use and work. People who have brain fog are uniquely susceptible to the dark side of the internet.

When I am clear, I have no problem. When I am not, I wander about for hours, completely unable to stop surfing, no sense of the passing of time, and a terrible wasted, exhausted feeling when I’m done.

Everyone I know with brain fog does the same thing. I’ll pop in later with some tips.

Great thanks to G for letting me post her letter, and a reminder that everyone is different, I’m not a doctor, and whatever works for me may not work for you.

About Brain Fog
Brain Fog Part I
Brain Fog Part II
Brain Fog Part III