I Was Diagnosed With ALS at Age 20. Here’s How Dark Humor Is Helping Me Cope

Julia Sullivan
·5 min read

Spencer Levine/Amanda Tam

Amanda Tam, 24, was in her first year at university when she began to notice some concerning symptoms. Her grip became weak, and soon after she had trouble walking and developed debilitating fatigue. A neurologist diagnosed Tam with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease. The condition affects the brain and spinal cord and causes a person to lose control of their muscles. The symptoms tend to get progressively worse, and generally only about 10% of people live more than 10 years after the diagnosis. (Although some, like Stephen Hawking, have lived much longer.) Tam copes with her ALS via a dark, witty sense of humor and educates her thousands of followers on social media. Here’s her story, as told to associate health conditions director Julia Sullivan.

I was 20 years old and living in Montreal when restrictions from the pandemic began to lift in early 2021. I had just started my first year in university, and I felt like my life was finally coming back after the lockdown—I was going out with friends (you can drink at 18 in Canada) and seeing my family. I felt like I had freedom.

One night in March 2021, I was lying in bed scrolling TikTok when I saw that my finger—the one I use to prop up my phone—was curved in a strange way. It looked crooked, and I was unable to straighten it. I thought, “Oh, I just got this new phone. Maybe it’s the way I’m holding it?” It was a wacky hypothesis, and it led to some strange Google searches, but I didn’t think much of it. Around the same time, I started noticing some issues with my grip. I remember trying to open a bag of dried mango in a sealed zip-lock bag and I couldn’t open it. All my friends at the time joked, “Girl, you need to go work out. You lay in bed too much, you’re clearly still thinking you’re in lockdown.”

So that’s exactly what I did. I went to the gym to try to get stronger. But exercise seemed to make things worse. I’d try to do push ups, but I could barely squeeze out assisted ones—my arms felt like they were crumbling beneath me. I thought maybe cardio would be easier, but my legs would just shake under me. My fingers also started twitching, and I had intense fatigue. I would nap for hours every day and still have no problems falling asleep again at night. My symptoms seemed weird, but I wasn’t super concerned.

I saw my general practitioner about my symptoms on July 14, 2021. (I waited until I was double-vaccinated before going into a hospital.) They did an MRI of my brain, but nothing came up. She mentioned that ALS might be a possibility, but a very unlikely one—it’s very rare, and I was thought to be too young to have it. She referred me to another neurologist for a second look. They did a few particularly uncomfortable tests to figure out what was going on, including a spinal tap. Basically, you curl up like a giant shrimp and are probed with a huge needle to remove fluid from around your spine. I felt like a maple tree being tapped for syrup. (If you’re not Canadian like me and don’t know how syrup is taken out of a tree, well, now you know.)

While I was going through all of these tests, my issues were getting progressively worse. My walk really started to get weird, and people were noticing. That summer, I watched The Theory of Everything, the movie about the famous physicist Stephen Hawking and how his ALS progressed over the years. I noticed a lot of similarities in our symptoms. I thought, “Maybe the universe is telling me something.”

On October 21, 2021, I was diagnosed with ALS. But by that point, I pretty much already knew what it was. The doctors told me what was going on, and I said, “Okay, thank you. I have a class to get to. Can we just…circle back about this later?” They seemed confused. I don’t know if they had ever experienced someone with my sense of humor or who coped with this diagnosis in that way.

Honestly, I didn’t have many hobbies prior to my diagnosis, so from that point forward I decided to take one for the team and make ALS my entire personality and just run with it. (Somewhat kidding.) Seriously, I wanted to raise awareness. A lot of people think this is a disease that only affects old white guys. It can happen to anyone. I don’t want to scare people and make them think, “ALS is coming for you! You better watch out!” but I had no family history of this disease or previous health issues. I got this diagnosis as a healthy person in my 20s.

Plus, the main thing my generation knows about ALS is from the ice bucket challenge back in 2014—we’ve really got nothing else. I was mindlessly scrolling on TikTok a lot, so I decided to start posting there, which included a video about my diagnosis day (a.k.a. being told I was going to die, but also me telling my doctor I needed to find a job). It blew up, I think, because people my age really want to learn about these things and understand what symptoms look like, but still have a dark sense of humor about it.

But as much as I love to make people laugh, I don’t wish ALS upon anyone, even my archnemesis. It truly sucks. But being realistic, and having a sense of humor, about my disease has helped me cope. I was never in denial or wondering why I got this. I am so young, so I decided to just continue on with my life. There’s no cure for ALS. There might be at some point, but I try not to think too hard about the future and instead live in the moment. I’m not drawing a bunch of unicorns with rainbows, but I’m also not Charlie Brown with a dark cloud following me around. I have bad days, but I also have plenty of good days—and a big part of that is because of the community I’ve found. I’ll post live sessions and see a bunch of regulars who ask me tons of questions. I’ve found a way to reach people and enlighten them about ALS, even if someone only hears me speak on their screen for a few seconds. I think that's really cool.

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Originally Appeared on SELF

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