Long COVID advocate Lilly Downs on finding joy amid uncertainty, celebrating the nurses who care, and redefining life beyond illness

Long COVID has affected an estimated 65 million people worldwide, leaving many to navigate life with ongoing symptoms.Long COVID, a condition affecting an estimated 65 million people worldwide, can bring a wide range of lingering symptoms such as fatigue, brain fog, chronic pain, and respiratory issues, often lasting for months or even years.

In this heartfelt episode, Jean speaks with Lilly Downs, an advocate for long COVID recovery, who shares her personal journey through illness, resilience, and finding joy amidst adversity. Lilly discusses her experiences with long COVID, autoimmune disorders, and chronic pain, and how these challenges have reshaped her view on life, happiness, and priorities.

a little about Lilly from Lilly: Hi! I’m Lilly, I’m 20 years old & have been battling my own body since getting covid in 2020. My GI tract became paralyzed, my immune system went haywire & I have spent over 9 months fighting for my life in the hospital. I started making TikToks to document my journey & destigmatize life with chronic illness, feeding tubes & a central line.  

You can follow Lilly on TikTok @lillydowns 

01:00 - Lilly's Initial COVID Diagnosis and living with chronic pain and multiple diagnoses 

07:00 - Coping with pain from a young age 

14:00 - Accepting the reality of your own mortality and shifting your life priorities 

20:00 - Finding support and building community and the integral role of nurses in her recovery 

23:00 - Self-care through creative outlets and finding independence

----

Host : Jean Campbell

Guest: Lilly Downs

Executive Producer: Jean Campbell

Producer: Wicked Child Studio, Hailey Rovner Malach 

Composer: Edoardo Vella