In a 60-second TikTok video, 19-year-old Lilly Downs shared a “day in the life as a sick kid.” Over 5 million people have watched her get out of bed and prepare her morning medications that help her treat her health problems caused by long COVID. Downs is from Golden, Colorado and before contracting COVID-19 for the first time she was a healthy teenager, playing soccer and hanging out with her friends.
Many people who test positive for COVID-19 fully recover from the infection in days or weeks, but others can experience symptoms and develop health problems long after the infection diagnosis. More than 200 symptoms have been identified with impacts on multiple organ systems and at least 65 million individuals are estimated to have long COVID. As winter approaches, the Centers for Disease Control and Prevention said it is anticipating a “moderate COVID wave” with as many hospitalizations as last year’s winter peak, and advises vaccination is the best way to protect yourself and loved ones from the disease.
“When I got COVID no one even knew what long COVID was,” Downs said. “Doctors were not very open or kind at first, because no one knew what it was. As months went on and more people came out with long COVID issues, doctors realized it was an issue, a thing.”
In one of her pinned TikTok videos Downs explains the health issues she’s developed since her original diagnosis in November 2020 to her viewers. She is currently treating two autoimmune diseases ankylosing spondylitis and behçets disease. In her video, she mentions having small fiber neuropathy, dysautonomia, and postural orthostatic tachycardia syndrome, or POTS. Downs also has gastroparesis, which causes stomach and intestinal paralysis. Due to this disease, she receives her nutrition through a central line and feeding tube.
“It’s pretty different for everyone,” she said. “Initially, when I was in the hospital my heart rate was like 120 when I was sleeping. My nervous system is the big one—dysautonomia, so pretty much just complete dysregulation of your nervous system—so I can’t regulate temperature. COVID came in and was just like shutting down this, shutting down this.”
From a young age Downs enjoyed creating YouTube videos, even though her parents never allowed her to post them. She liked the creative process, which has helped her with sharing her life on TikTok. During her months in the hospital, she would spend her time on the video app and later began learning TikTok dances with her mom and hospital staff. She said once she left the hospital, she wasn’t sure what to do next and missed the constant stimulation of the hospital, doctors and nurses.
“I definitely came home and was just kind of like, I don’t know what to do with my brain. So, I started making TikToks. I was making the most out of my gap year and documenting what I do to stay busy and stuff like that and just kind of having fun with it,” she said.
From the comfort of her home, Downs is recovering from recently contracting COVID for a second time. Unaware of how her body could react to the infection, Downs was terrified and diligently did everything she could to maintain her health progress. She shared her experience by posting a TikTok video that reached over 5 million people, most of whom were not entirely aware about long COVID and its repercussions.
“I received a lot of different requests and questions through that and it kind of took off from there. People are curious, I can do this to keep myself busy but still kind of connect with others and share my story,” she said.
The TikTok platform has quickly become a space where people go to share their stories or bring awareness to certain topics like mental health. The app has also given young people the opportunity to learn from others experiencing similar issues and help build online communities.
“I’ve made the most amazing friends through meeting people online. My best friends are all people who have gone through similar situations,” Downs said. “Friendships are so much stronger and more comfortable when you know about the person and don’t have to explain yourself. With everyone else, you do have to explain yourself because they don’t have the perspective that you do. That’s when being chronically ill can get super isolating.”
Not only does Downs want to bring awareness to long COVID while sharing her life on TikTok, but she also wants to give people perspective and show that she is a normal person. She said she lost a lot of friends through being ill and believes people forget you have a personality when you’re sick.
“It’s weird, people forget that you’re a human and I’m a normal person,” she said. “I kind of liked bringing that to TikTok and showing my personality, showing that I am a normal 19-year-old. Giving them an inside look [at] my every day, how I feel, and how things affect me. I just like sharing everything and more than just pictures and texts.”
Sharing so much online can come with some repercussions. Although most responses to her videos have been positive, Downs has received negative feedback on her page. However, she says there are also people in her comment section who have been rooting her on and are aware of events happening in her life.
“I got a new job and people were so excited and so uplifting when it came to the job and I was like wow, people actually care. It’s been so cool to see all the people who are just so supportive, and I appreciate that so much, it has made such an impact on me personally,” she said.