Q: Even though I finished chemo several months ago, I’m still struggling with the dreaded “chemo brain.” I find myself forgetting pretty basic things, such as my kids’ sports schedules and the names of people I recently met.
If not for the calendar in my phone, I don’t know how I’d ever keep any appointments or plans I’ve made with friends or my wife — and that’s only when I remember to put things in my phone to begin with. My boss is constantly reminding me about work tasks I’d completely forgotten. I never really had an organizational system or kept a to-do list because I never needed to, and now I feel too overwhelmed and embarrassed to learn how to do it.
But as far as anyone outside my family knows, I’m in remission and everything’s great. Hiding my cognitive failures is exhausting. Help?
I’m so proud of you for getting through treatment and coming out the other side still so committed to doing right by your wife, your friends, your children, and your job.
Because can we talk about that for a moment? I don’t want to diminish your current struggles at all — but what you went through is like, a lot. I hope the people in your life recognize that and are willing to cut you more than a little bit of slack if you forget a name or appointment.
And I’ve been there too. I know that while that’s a nice thought, it’s not enough. Despite everything we’ve gone through, it’s often all too easy to blame ourselves for the scars we carry — physical and mental.
So, here are three things to ask yourself:
1. Could you be open to learning some new organizational systems?
While there’s a lot that’s unique about the experience of cancer treatment, the feeling of shame and being overwhelmed around “failing” at organization and focus is one shared by many folks facing a variety of illnesses and life circumstances.
Adults newly diagnosed with ADHD, people dealing with chronic sleep deprivation, new parents learning to manage the needs of a tiny human along with their own: All of these folks have to deal with forgetfulness and disorganization. That means learning new skills.
Some of the most compassionate and most applicable organization advice you’ll find is actually stuff meant for people with ADHD. Chemo brain can mimic ADHD symptoms in many ways, and while that doesn’t mean you now have ADHD, it does mean the same coping skills are likely helpful.
I really recommend the books “ADD-Friendly Ways to Organize Your Life” and “Mastering Your Adult ADHD.” The latter book is meant to be completed with the help of a therapist — which might be a great idea for you if you have access to one — but is totally doable on your own. These books teach practical skills that will help you keep track of things and feel less stressed and incapable.
Setting a new, family-wide organization system is also a great way to involve your loved ones in helping you cope.
You didn’t mention how old your kids are, but if they’re old enough to be playing after-school sports, they’re probably old enough to be learning how to manage their own schedules. That’s something the whole family can do together. For example, have a color-coded calendar on a big whiteboard in the kitchen or family room, and encourage everyone to contribute to it.
Sure, it might be a bit of an adjustment if you were always able to remember everything before. But it’s also a great moment to teach your kids about the importance of balancing emotional labor in a family and taking responsibility for your own needs.
And speaking of getting others involved...
2. How do you feel about opening up to more people about your struggles?
It sounds like a lot of your stress right now is coming from the effort of pretending that “everything’s great.” Sometimes that’s even harder than dealing with the actual problem you’re trying so hard to hide. You have enough on your plate right now.
Worst of all, if people don’t know that you’re struggling, that’s exactly when they’re most likely to come to negative and unfair conclusions about you and why you forgot that meeting or assignment.
To be clear, they shouldn’t. It should be completely obvious that it can take folks a while to recover from cancer treatment. But not everyone knows these things.
If you’re anything like me, you might be thinking, “But isn’t that just an excuse?” No, it’s not. As a cancer survivor, you have my permission to take the word “excuse” out of your vocabulary. (Except for “Excuse me, what part of ‘I literally just had cancer’ don’t you understand?”)
It may seem like people are so annoyed or irritated with you sometimes that giving them an explanation wouldn’t make a difference. For some people it wouldn’t, because some people suck.
Focus on the ones who don’t. For them, having some context for your current struggles might make the difference between frustration and genuine empathy.
3. How can you challenge the way you, and others around you, expect to keep up?
How did you decide that remembering your kids’ extracurricular schedules and the names of everyone you meet is a thing you’re supposed to be able to do?
I’m not being sarcastic. I’m actually hoping you’ll reflect on how you came to internalize these expectations of being able to remember everything and manage multiple humans’ lives without help.
Because if you stop and think about it, there isn’t actually anything “normal” or “natural” about the idea that we should be able to easily commit such things to memory.
We don’t expect humans to run 60 miles per hour to get to work; we use cars or public transit. We don’t expect ourselves to accurately keep time in our minds; we use clocks and watches. Why do we expect ourselves to memorize sports schedules and endless to-do lists?
Human brains aren’t necessarily adapted to memorizing which days and times Josh has Model UN and when Ashley has soccer practice.
And for a long, long time in human history, our schedules weren’t determined by clocks and agreed-upon times. They were determined by the rising and setting of the sun.
I’m not really one for silver linings, but if there’s one to be found here, it’s this: Your treatment and its lingering side effects have been devastating and painful, but maybe you can let them be a reason to free yourself from ridiculous cultural expectations that honestly suck — for pretty much everyone.
Yours in tenacity,
Miri Mogilevsky is a writer, teacher, and practicing therapist in Columbus, Ohio. They hold a BA in psychology from Northwestern University and a master’s in social work from Columbia University. They were diagnosed with stage 2a breast cancer in October 2017 and completed treatment in spring 2018. Miri owns about 25 different wigs from their chemo days and enjoys deploying them strategically. Besides cancer, they also write about mental health, queer identity, safer sex and consent, and gardening.