A young Coloradan learning to live with long COVID turns to TikTok to educate about chronic illness

FORT COLLINS — Lilly Downs rolled out of bed in her new apartment and began setting up her morning’s IV fluids, which flow from a tube in her chest into her bloodstream to keep the 20-year-old hydrated.

Next, she crushed and dissolved pills so they could run through a separate tube into her intestines, which absorb the medicine better than her stomach.

The steps Lilly took that October morning are necessary because her stomach stopped working properly following her first bout with COVID-19 four years ago. But her routine also served another purpose: It was content she filmed for a video that she later posted on TikTok, where she has amassed nearly 470,000 followers.

Lilly added Tylenol to her mix of medicine that morning, she explained in the video, because her mom was going to be giving her an intravenous immunoglobulin, or IVIG, infusion, which doctors have found to be an effective treatment for patients who have long COVID.

“I always have to pre-medicate with Benadryl and Tylenol so that I don’t have a reaction to the infusion,” Lilly said during the minute-long clip.

For Lilly, TikTok has become a kind of a job — and definitely a distraction — while living with long COVID, the name given to the physical and cognitive symptoms that can persist for months and even years after patients’ initial infections. She’s become a social media influencer, earning thousands of dollars and brand deals by documenting what it’s like to face life with a chronic illness.

She first fell ill with COVID-19 as a teen in 2020 during the height of the pandemic, and The Denver Post has followed Lilly since 2021 through multiple hospital stints and her search for normalcy and answers as to why symptoms, including a high heart rate and brain fog, still linger.

The Post last caught up with Lilly in 2022, when she wasn’t just still sick, her symptoms were getting worse and she was hospitalized with life-threatening infections. Now, Lilly said in a recent interview, she’s doing better physically, living on her own and planning to resume her education in January while using her platform on social media to educate people about her life and illness.

“Filming and editing my videos — it gave me something else to focus on,” she said.

On TikTok, Lilly shares her experiences with feeding tubes, medications and being interviewed by news reporters. Hundreds of thousands — sometimes millions — of people watch her individual videos. But she also shares things you’d expect from a typical 20-year-old — moving into her first apartment, traveling with friends — and it’s these things that show how far Lilly has come.

Two years ago, Lilly was an 18-year-old who just wanted to go home after spending months at Denver’s Rocky Mountain Hospital for Children. Any travel and college plans she entertained were on hold out of fear she’d need to return to the hospital again.

Now, she’s living life outside the hospital’s walls, on her own for the first time, traveling with friends to Utah, and volunteering at a camp for chronically ill kids — and she’s sharing it with the world.

Learning more about long COVID

Lilly was 16 when she first became sick and was hospitalized during one of Colorado’s deadliest waves of the virus. Soon after, she began developing ulcers all over her body that doctors were unable to explain and struggled to treat.

When she first became ill, pediatric doctors were unprepared for patients with COVID-19 to develop persisting symptoms. Long COVID was first seen in adults, and researchers and physicians didn’t know how common it was in children and teens.

A lot has changed since Lilly first became sick, and even since 2022, when her symptoms worsened to the point she had to relearn how to walk on her own and she spent most of the year in the hospital.

While COVID-19 is still around, vaccines and treatments are now available. Doctors and researchers have also learned more about long COVID, including how it affects adolescents, and are working on finding better treatments, such as IVIG, for patients with persisting symptoms, said Dr. Alexandra Yonts, a pediatric infectious disease physician at Children’s National Hospital in Washington, D.C.

Doctors still don’t know why someone specifically develops long COVID, but there are risk factors, such as if someone has multiple symptoms when they first get sick or have autoimmune diseases, she said.

Adolescent girls are at a higher risk of developing long COVID, although the condition also appears more in boys ages 5 and younger, said Yonts, director of the hospital’s post-COVID program.

In 2022, researchers estimated that as many as 651,000 Coloradans had long COVID, with clinics struggling to keep up with the demand for treatment.

Studies also show that the more times a person gets COVID-19, their risk of developing lingering symptoms increases, she said, adding that getting vaccinated decreases a person’s risk of getting long COVID.

“We’re definitely in a much more knowledgeable place of this disease,” Yonts said.

At Yonts’ clinic, doctors have found that patients can experience a range of long COVID symptoms. Fatigue and decreased exercise tolerance are among the most common.

Patients also appear to fall into two groups, Yonts said. One group has more cardiovascular symptoms, such as heart palpitations and difficulty breathing. The other group has more gastrointestinal and neurological symptoms, such as headaches, vomiting and stomach pain.

“It was a way to connect with people”

While there had been a period in 2021 when Lilly appeared to be doing better, she took an unexpected turn as she began vomiting and had trouble swallowing and eating. She landed in the hospital again at the end of summer 2021, missing the first days of her senior year at Lakewood High School.

Lilly was eventually diagnosed with gastroparesis, which means food doesn’t move through her body when she eats, and was placed on a feeding tube.

But her central line — the very thing that gave her nutrients — kept causing life-threatening infections that put her in repeatedly in the intensive-care unit.

So when the autumn of 2022 rolled around and Lilly’s friends left for college without her, she decided to make the best of the situation by posting on TikTok.

The social media app became not just a distraction, but a way to meet people. Lilly has met others living in Fort Collins who also follow her videos, she said.

“It was a way to connect with people because it’s a lot harder in real life when your friends are gone,” Lilly said.

TikTok helped Lilly not only make new friends, it also let her friends from high school better understand her illness, she said.

The TikTok videos help show “that I am a normal person,” she said.

Elisa Downs, Lilly’s mother, said she didn’t quite understand when her daughter started making TikToks — even as she helped make Lillly’s dance videos in the hospital.

“When she really started to pick up momentum, I was, of course, worried because this world is cruel,” Downs said, noting how controversial the topic of COVID-19 can be online.

But then, Downs said, she witnessed the community her daughter found online.

“I saw that it was giving her a sense of purpose,” she said, adding, “She was able to really find a great network of people there who understood.“

Lilly has also been able to earn money for her TikTok videos via the platform’s Creator Fund, which pays users based on how many people view and engage with their posts. To join the fund, a person must be at least 18, have a minimum of 10,000 followers and at least 100,000 video views in the past 30 days, according to the social media app.

Lilly’s videos about her illness — especially the ones about how she receives supplemental nutrition — earn the most views. One of her clips about her nighttime routine received more than 60 million views, bringing in about $5,000 alone. Overall, Lilly said, she’s earned about $23,000 from her her TikTok videos, excluding brand promotion deals.

Lilly said she is “technically” a social media influencer — she has a manager and has started getting brand deals, such as with BeeKeeper’s Naturals, which sells natural remedies. Lilly posted a video showing her using one of the company’s products to help with her brain fog.

But Lilly has other plans, too. She moved to Fort Collins from Golden in August and is adjusting to living on her own for the first time. She wants to get another job and start college next semester at Colorado State University, studying nutrition science in hopes of becoming a pediatric dietitian.

“I’m excited to have a routine,” Lilly said. “Being in class — I’m nervous just because my brain… is just not where it used to be.”

A new normal

Physically, Lilly said, her symptoms have gotten better. She still has days where they flare and she struggles with brain fog, which makes her lose her train of thought.