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How I'm Coping With Short-Term Memory Loss After a Myalgic Encephalomyelitis Diagnosis

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Recently I’ve been struggling with my short-term memory due to myalgic encephalomyelitis (ME). It’s something so new to me and incredibly difficult to admit. I’ve always had an incredibly sharp memory, photographic to the point that I could describe details of a room, and the interactions and descriptions of the people in it. As a child I recalled each day at school to my mom, including my theories on home life based on conversations I heard and the facial reactions and body language of my peers and teachers. I could tell you if the tiniest thing in a room had been moved or changed.

So it hit me like an incredibly humbling train when I suddenly stopped being able to retain moments days, hours, sometimes minutes that had just past. I can repeat scripts word for word of old movies, books, song lyrics verbatim, tell you what I wore the first day of school in grade seven, and drunken stories that my friends wish I could forget from my early 20s. I spout useless trivia like I’m Wikipedia, but it gets hazy starting in my mid-20s, blurring together as my first symptoms of ME began to appear.

Now at 33, I struggle to process any new information given, even if it’s simple. I forget complete conversations and lose hours of days. To retain anything, I need to have it repeated over and over for days to make it stick. I’ve given up driving after losing an hour and suddenly finding myself sitting in my car on a dirt road miles away from where I was meant to be, with a quarter of a tank of gas burned and my dog barking at me frantically.

The worst is facial recognition, it takes at least three times for me to meet a person in order to remember their face and recognize I’ve met them before. This is all made worse by a recent move. It’s terrifying when you can’t remember your new landlord’s face or the people working working on the house. People who have met you come to the door expecting you to remember them because you’ve met them before, but you look at them with confusion. And as a woman who is home alone, I get a bit apprehensive of the “stranger” at the door. Then, it takes a few minutes of conversation for it to click. After this, I can remember who they are. The conversation continues with me hoping they don’t think I’m rude for only opening the door a crack for the first few minutes before inviting them in. Now, this usually happens the first three to four meetings and then their face “sticks,” and I recognize them going forward.

It’s a complete switch from who I used to be, and one of the hardest parts of the ME journey for me to try and admit and explain to those around me. The fact that my memory seems to pick and choose the information it remembers is hard for me to explain and others to understand. This, paired with my stubborn need to still try to appear how I “used to be” and hide it as much as possible, makes it even more complex. I struggle between wanting others to understand and not wanting them to know how hard I struggle just having a 30-minute interaction.

I’m starting to try to be honest and explain as best I can, even on days when words seem to fade inside my brain just before they touch my lips. Sometimes I say completely different words than I meant to — that one’s actually pretty entertaining some days. Even as I write this now, I just forgot what I am writing about and the whole point of why I started writing in the first place. (I reread and try to continue with some composure intact.)

I’m learning to accept the new me. I’m trying to be honest with those around me, and they tend to be pretty accepting and understanding too. I’m learning to say, “I’m sorry; sometimes I don’t remember I’ve met someone, so please introduce yourself to me the first few times we meet until it sticks.” I’m also learning to enjoy moments much more because I can’t relive them in my memory over and over like I used to. I’m adapting to this new me and loving her for who she is, ever-changing and ever-growing.

Originally published: January 30, 2020
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