Social media has been seen as a narcissistic medium to talk about ourselves. But when you struggle with memory, it can be a saving grace.
“Hey Mom, do you remember…” my children start to ask, and I brace myself for the reality that most likely my answer will be no, as it has been countless other times.
I can’t remember the first steps of either of my children, nor their first words. When they clamor for me to tell them a story of when they were younger, I return to the same handful of stories I remember over and over.
When friends will, full of joy and laughter, recall moments we spent together, I’m often filled with feelings of deep sadness, because I simply don’t remember them.
There are several reasons I struggle with my memory. One is due to my aphantasia, a condition in which we lack the ability to visualize things in our “mind’s eye.”
Another is due to having experienced years of trauma. According to research by Dr. Kristin W. Samuelson, issues with memory are prevalent among those with post-traumatic stress disorder.
Finally, though, is my struggle with brain fog, one of the symptoms of my various chronic illnesses. Among other things, brain fog can impact the ability to store and recall information.
These three factors work together, impacting both my short-term and long-term memory and making it difficult to do things like remembering appointments, recalling conversations, or reminiscing on past events.
I’m not alone in this. Issues with long- and short-term memory are a common symptom for those living with disabilities, chronic illnesses, or mental health issues.
Michelle Brown, who lives with trigeminal neuralgia, also struggles with her memory. “The effects of my chronic illness have been profound,” says Brown, “but the most disheartening has been its impact on my memories.”
Apple Lewman states their post-concussive syndrome and ADHD have impacted their memory as well. “I remember random tidbits about life events but sometimes not important ones. For example, I can’t remember when I told my partner I love her for the first time. It crushes me that I don’t have that memory to look back on.”
Like Brown and Lewman, I am also devastated by the ways my memory has been impacted. My memories are elusive; searching for them feels like trying to find that word that is on the tip of your tongue but can’t be found. I mourn for them.
Because of these memory issues, those of us with chronic illnesses have to develop strategies to try to navigate the world.
I use a day planner and always carry a notebook to write things in.
Brown states she uses “a white board, a fridge full of reminders, and a sticky note app on my phone. They include everything from appointments, to phone calls, to simple chores and grocery lists.”
Jaden Fraga, who lives with multiple chronic illnesses, has also come up with ways to help jog their memory. They take notes on events so they don’t forget. “I take pictures and videos constantly now,” says Fraga. “I’m basically a digital hoarder in that I’m constantly saving screenshots, pictures, [and] videos, because I’m so scared of forgetting things.”
Like Fraga, I also take lots of pictures, my phone out and documenting moments I want to be able to remember or look back on in the future.
I post these pictures to social media, along with little stories about my days. Looking back at these photos and stories later helps me to remember things I would otherwise forgotten.
Social media has been seen as narcissistic and self-aggrandizing. But when you struggle with memory, it can be a saving grace.
Social media usage is often the butt of jokes (“We don’t care what you ate for lunch, Karen!”).
For those of us with neurodiversities, trauma, physical or mental health conditions, or medication side effects that impact our memory, social media can be a vital tool in helping us be able to our own history.
A few years ago I realized the benefit that the “Memories” feature on Facebook could have for someone like me, who can’t always access their actual memories. This feature shows the things you’ve posted on that day every year you’ve been using Facebook.
I’ve found that I can use this feature to help remind me of little things that have happened in my life, as well as to help me maintain a sense of when things happened.
Brown, Lewman, and Fraga have also discovered the usefulness of this feature, using it to note trends in their lives and to recall various memories. “It helps me with my timeline gaps,” says Lewman.
Over the course of the last several months, Facebook has reminded me of 5 years ago when I was diagnosed with one of my chronic illnesses, as well as 2 years ago when I had my first SSDI hearing.
It reminded me of going back to graduate school 7 years ago, and of going with my daughter to get kittens 4 years ago (as well as the fear a year ago when one of those kitties ran away for the night).
It reminded me of parenting frustrations and of endearing moments like 8 years ago when my daughter, at 6 years old, asked me for a tattoo gun.
All of these are moments that had vanished from my mind until I was reminded by Facebook.
So despite the faults and criticisms of social media, I’m going to keep using it and posting my pictures and the various little things that happen throughout my days.
Because with the help of social media, I’m able to remember just a little bit more. By using it, I can experience those moments of joy that come with recalling experiences with loved ones.
“Hey kiddo,” I say, walking into the living room with my phone in my hand and my Facebook app open, “Do you remember…”
Angie Ebba is a queer disabled artist who teaches writing workshops and performs nationwide. Angie believes in the power of art, writing, and performance to help us gain a better understanding of ourselves, build community, and make change. You can find Angie on her website, her blog, or Facebook.