Growing up, my aunt had this disease that wouldn’t stop progressing. We went on a walk once where everyone wore orange and somehow our miles logged helped researchers find a cure. She spoke of the “lesions” on her brain and spinal cord and my teenage self empathetically pretended to understand. My grandma said she might not live beyond her 50s.
Then, just a few weeks after my 23rd birthday, I was diagnosed with that same disease.
“We see a clear indication… of Multiple Sclerosis,” the disbelieving ER doctor croaked. June 17th, 2021 is a day I’ll never be allowed to forget. All of my post-COVID-vaccine Hot Girl Summer plans shattered into a “Hot Girl Bummer” period. I had worked in education for the year after graduating college online in 2020. The school year ended just days prior to my diagnosis, so I was pretty much unemployed, in bed, making MS my personal research project all summer long. My family thought I was dying, so I had to convince myself and them that me and my lesion-riddled brain weren’t going anywhere just yet.
I initially resorted to social media for resources because that’s where activists and new-age media outlets provide Gen Z with accessible information. Immediately, I found myself immersed in tragic videos and desperate posts. MS TikTok is terrible. The most viral content is typically about the worst possible outcomes. I felt trapped and alone, surrounded by posts that read, “MS isn’t just a word. It’s a life sentence,” and the like. Even the positive posts are bad, for the most part. Living with a “rare disease” means living in a niche of the internet that nobody normal ever wants to click on unless it's a tear-jerker or an insider scoop of an actress like Selma Blair.
I am eight months into living with MS now, and I’m doing well. I found some better media, like Shift.MS. I go in for a Tysabri infusion once a month, and my latest MRI shows the same ugly picture as the original in June. No new lesions since. It was like seven months of not being able to exhale until I got that news, because I knew from my aunt that not every medicine would work. My aunt continues to be a great resource and we now share a DMT. We joke that maybe someday we can even get our infusions together.
My neurologist is also pretty great. He’s a researcher and sees over 800 MS patients in Seattle. One of the first things he told me was to keep living my life like I already had been living it before. I don’t think he knew that I’d been living like a socialite with a weekend weakness for mojitos and mimosas. I mean, I’m 23. But per his advice, I eventually began to go out with friends again.
One night recently, I went with a small group of friends to a trivia night at a pub. I wasn’t super helpful on the team until a surprise neurological question came up that nobody else knew. Lhermitte Sign is a super niche symptom I have had for years. I slowly admitted that I knew that was the answer, but of course, the liveliness at the table dimmed. People have a tendency to find pity to be the correct response, rather than authentic interest in how I’m doing.
My friends mostly don’t even know what “Multiple Sclerosis” means, beyond the notable one who brought me a care package after my diagnosis, cooling towels and all. I think the most effective ways I’ve broken the ice with people who don’t know how to react is humor. My friends and family have mostly adjusted to me making jokes about my condition. Comic relief is undoubtedly my generation’s most effective survival tactic. People my age just want to have fun.
Because of the pandemic, I think that’s what everyone wants. To dance and laugh and hug. But now, my hangovers and fatigue symptoms last for days after I rally myself to join a night out, and unlike the rest of my generation, I have to stay focused on maintaining my health. And not like, with a weekly self-care routine.
I am always on the hunt for people who are young and sick like me, especially after being diagnosed alone during a pandemic. The relief I’ve found in just one online support group has been incredible, it’s just that nobody is my age.
I fear the swift hand of disease progression knocking the youth right out of me. I feel like I live on a fault line, or maybe an active volcano ready to collapse. I question my cognition, my energy levels, and my body every day. Shaky hands, backaches, and forgetfulness will never be the same. BUT I have also learned a lot about taking life for granted. I have learned a lot about ability and privilege, self-advocacy, and my own resilience. I’ve started to relate and empathize more greatly with elderly people than I do with fellow young adults. A lot of elderly people are super chill. And wise. And I know other people my age with MS exist. In fact, more and more of them are likely being diagnosed all the time.
Being Gen Z means that I was already living in a politically polarized and ecologically damaged world. The pandemic job market after college has been all but opportune. We treat ourselves to $8 dollar CBD coffee to get us by in spite of our bank accounts anyways. The vibe is “I Know the End” by Phoebe Bridgers.
Luckily for us, getting through all of the ongoing crises in this world means we are resilient and ready for change when it comes. And people aged 18-25 who are diagnosed today might have a chance to truly beat MS. New research is suggesting potential for prevention, and treatments have evolved entirely during our lifetimes. My MS is stable since calming down a baker’s dozen of active lesions upon diagnosis with steroids and I’m starting to wonder if I’m even dealing with the same beast as my aunt is at all. While MS was settling into my fate, her’s was calming down for the first time in years.
I hold onto hope and whatever’s left of my high school athleticism to stay healthy. I’m still settling in because shock comes in waves, but I figure that I’ll meet some MS girlies (gender-neutral usage) my age soon. Then we can all joke about our broken algorithms together as we go.
My name is Kylin (the only word that sort of rhymes with my name is myelin). I am a Seattle-based writer, equity worker, and environmentalist, who also loves to make digital content. I was diagnosed with MS in June 2021, and am currently taking Tysabri.