My Invisible Illness: Living With Brain Fog After Brain Tumor Surgery

While it’s been six years since my emergency brain surgery and discovery of my rare brain tumor, whenever I unexpectedly hear the word cancer in the media or in a conversation nearby, I cringe. It’s a surreal reaction. “I have cancer.” No matter how many times I hear that six-letter, two-syllable word, I feel shocked, as if I’m receiving my diagnosis for the first time. I pause for an instant, toss my miniscule worries aside, and focus on “the now.” Yet as this momentous minute fades, I disregard my cancer journey and revert to being “my original self”: a healthy, type-A person with high self-expectations.

“Wait, but you don’t look sick!” or “what? I’d never think that!” are two comments I receive often. Why? I have an invisible illness. Externally, I look as I did before my brain surgery with no signs of cancer or cognitive decline. Internally, between my brain fog, frequent nausea, and weak short-term memory, my struggle is apparent to me. Since these symptoms are hidden when I look in the mirror, I expect myself to act ordinary, because I look ordinary. Oh, how appearances can be deceiving.

If someone is wearing a cast, walking with crutches, or has a shaved head or a pale, fragile face, the door would be held open for them. They would be asked “are you okay?”, “what happened?”, or “how are you feeling?” A visible injury or illness aligns with an assumption of fragility or discomfort. When I’m injured or ill, I rest, I’m easy on myself, and I know that recovery is on the other side and this will end. With my internal illness, I don’t see a tangible finish line, so I’ll just keep jogging.

When I have a conversation with someone I’m meeting for the first time, I remember the outfit they wore, their witty jokes, and deep confessions, but I cannot remember their name. Whether I’m on a first date, being introduced to a friend’s new boyfriend, or meeting a baby, there’s a 10% chance I’ll retain their name. So asking “where’s your man?” or “how’s your baby?” is my method to avoid this embarrassment.

Hell on earth is when I introduce people, and I’ve only met one of them just a minute ago. I panic, smile, and mumble a name under my breath that I’ve pulled out of my ass. These five seconds feel like five minutes. Ironically, this is when I’m proud of my brain as it blacks out these cringeworthy interactions. The Olympic challenge for me (or perhaps you too?) is remembering a friend’s new last name once she’s married. Changing your name on Instagram after a wedding should be illegal. “Why do I follow this random person? Who the heck is… oh… right.”

Whether it’s the book I’m reading, the Netflix show I’m watching, or the restaurant where I’m eating, its title is in the abyss. I say, “guys, the show I started is amazing!” and I’m asked, “which one?” Externally I sigh, smile, and laugh while saying, “ugh, I can’t remember.” Yet internally, I’m anxious and embarrassed knowing that no matter how long I wait, or how hard I try to dig through my brain, it won’t come to me. Those who know me are ready to play an unexpected “verbal charade” where I throw every word and image flying through my brain at them until they shout the word or name that I was aiming for. That feels like victory on both sides, as it’s a game for them and relief for me. (Shout out if you’ve done this for me, I appreciate you).

When you feel something on the tip of your tongue and you can’t say the word, THIS is what I experience and how I feel every. damn. day. Whenever I see this happening to someone, I interrupt them and say, “This is how I feel,” as I’m thrilled to have them peek into my brain. This split second is enough for me to feel that moving forward, they may understand my endless frustration.

Yesterday I was chatting about Snow White with my three-year-old niece, and when I asked Amelia who her favorite dwarf was, I couldn’t remember four of their names. While I was scratching my head with my weak attempt, Amelia was confidently listing them. I was impressed by her intelligence (and cuteness!), yet this tiny interaction shifted to a dark realization: My brain is relying on a three-year-old for help. 

Whenever complaining or verbalizing my frustration, I’m often told “it could be worse!”, and while some people loathe this reply no matter what challenge they’re facing, I absorb those words as fuel. My brain has altered how I think, but I won’t let it take away my appreciation for life. My gratitude for being alive will always trump my invisible illness.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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