Memory and Chronic Illness

For the longest time, I prided myself on having a picture-perfect memory. The kind of memory that could easily retain and recall all sorts of information—all occasions (special or ordinary), historical dates and events l studied in school, news stories, street maps, plot lines, poems I love, random trivia facts I picked up from bottle caps and magazines, and so much more. 

My beautiful, busting-at-the seams memory started to lose its specificity after I was diagnosed with trigeminal neuralgia (TN) in 2017. Between the chronic pain and medication side effects, I found my memory changing, and I had no idea how much that would affect me.

What I noticed

A little more than a year ago, I went to the pharmacy to pick up my prescription. When it was time for me to pay, I had to punch my phone number into the keypad to confirm my identity. And I completely froze. For 30 long seconds, I couldn’t remember my phone number. I could remember my social security number, my husband’s phone number, and my childhood phone number, but not my own. What made it worse was that as I was running through all the numbers in my head, the pharmacist kept talking to me, making it infinitely harder to concentrate.

In retrospect, this incident isn’t the red flag I thought it was. After speaking to my doctors and friends, a very good point was made: in this day and age of mobile phones, when do we ever call ourselves? We don’t have to memorize phone numbers the way we did while growing up in the ‘80s and ‘90s. So it wasn't strange that I couldn’t immediately recall my number. As long as I wasn't forgetting big things—like deadlines, paying my bills, and other responsibilities that affect my day-to-day life—there's nothing to be overly concerned about.

All of this made sense to me. But that day in the pharmacy had me examining the canvas of my post-TN life and wondering if this was an isolated incident or part of a larger, so far largely unnoticed pattern. 

What I realized upon that examination was that I had become more forgetful: my short-term memory was not what it used to be. 

What the research says

If you do a quick Google search of “chronic illness and memory,” you will come across thousands of hits on how the former affects the latter. The simplest answer to whether or not chronic illness affects memory is: yes, it does. Chronic illness can impact your memory and concentration. 

Which, if you live with a chronic illness, makes sense. In my experience even just with migraines, it is near impossible to remember anything or concentrate when I’m in the midst of feeling like my skull is going to split open. With TN, that feeling is amplified exponentially: the pain is so acute and all-consuming that memory recall or any sort of focus isn’t in the realm of possibility.

The culprits

When I first started noticing that my short-term memory was deteriorating, I singled out two culprits. One is my age and the other is my medication. 

I’m in my late 30s now and, after conversations with my neurologist, parents, and friends, I know it’s perfectly normal to not remember every insignificant detail you come across. However, as a person who isn't used to forgetting things—even insignificant details—I resisted this fact, but I did recognize its truth. Our brains discard unused information all the time, much like those little memory cleaners in one of my all-time favorite movies, “Inside Out." 

Then there’s my medication. 

Chronic illness symptoms and demonstrations are just one side of the impaired memory equation; the other side is medical side effects. The medication I take to manage my TN pain is called gabapentin. Memory impairment is listed as an “uncommon” side effect to the drug, but there is research that points to long-term use causing memory impairment, and anecdotal accounts suggest that its more common than we may think. 

Research also says that, barring other health conditions, this memory impairment is reversible. Meaning that were I to stop taking gabapentin, my short-term memory should recover.

It’s complicated

Temporary, short-term memory loss may seem like a small price to pay for some—any—pain relief, and it is in relative terms. But it isn’t by any means a “small” price. 

The psychological consequences of chronic illness can be just as burdensome—sometimes moreso—than the illness itself, and I had no idea how much memory plays into that. 

My memory was one thing I had unquestionable confidence in and now it had become yet another thing perverted by TN. Going from someone who never had to write anything down to someone who writes everything down—twice because I’m paranoid about forgetting anything important—has been a real blow to my ego and sense of self. It has made me second-guess my memory more times than I can count. 

Memory impairment also plays into a narrative very familiar to anyone living with chronic illness: that of laziness. Living with chronic illness likely means mental and physical fatigue and necessary rest are more the norm than not. This can trick you into believing you’re lazy when, logically, you know laziness has absolutely nothing to do with it. 

When your memory isn’t what it used to be, it’s too easy to see that as evidence of your laziness—like you’re too lazy to remember. Like you’re not making enough of an effort to remember. Like you’re flaky and unreliable. 

This is about you

Here’s what I’ve learned: No one needs to remember everything. And no one needs to remember anything without some help. That’s why we write things down in calendars and have reminder notifications on our phones. Not because we all live with chronic illness and not because we’re all lazy. We do it to make life simpler for ourselves. I’m slowly coming to terms that there’s no shame in me writing things down, twice even, if that makes me feel more in-control and on top of my life. 

There’s no shame in me also acknowledging that part of the changes in my memory have to do with me getting older—I like to think of this as my brain being mature enough to let go of that which I don’t need. You know, release all the bullshit and deadweight. 

If you know someone in your life who lives with chronic illness, I want you to know that if they forget things, it has nothing to do with you. It is a side effect of their health condition. They are doing the best that they can to take care of themselves and live this life. If they don’t remember something, there’s no need to tiptoe around it or make it some big drama; just gently, kindly, remind them. 

If you live with chronic illness, I want you to know that you’re not alone. No matter how long you’ve lived with your condition, none of this is easy. If you are concerned about changes in your memory, talk to your doctor about it. Pay attention to what you’re forgetting and how often. Ask loved ones if they have noticed anything. 

Because, at the end of the day, nothing is more important than you getting the answers you need to feel comfortable and have agency over your body and mind.