Gigi Robinson isn’t your average model. On her Instagram and TikTok pages, you’ll find the usual influencer content — dispatches from New York Fashion Week, GRWM videos, behind-the-scenes footage from movie premieres. But you’ll also find something unique to Gigi: a no-holds-barred look at what it’s like to live with multiple, serious chronic illnesses.
You may have seen headlines about Robinson. She’s the Sports Illustrated swimsuit model who also openly lives with three chronic diseases: a rare genetic condition called Ehlers-Danlos Syndrome (EDS), which impacts the body’s connective tissue; Mast Cell activation syndrome (MCAS), which causes symptoms of anaphylaxis (like hives, difficulty breathing, and swelling); and POTS, short for postural orthostatic tachycardia syndrome, a disorder affecting the autonomic nervous system.
But behind the headlines and diagnoses is a young woman who is more multi-hyphenate talent than anything else, balancing skills in photography, patient advocacy, digital marketing, and more.
“This didn’t happen overnight,” Robinson says over her recent string of successes which, along with the SI spot, include a podcast deal with Spotify and closing the Runway of Dreams adaptive fashion show last year. “I didn’t fall into health advocacy this year, even though it’s gotten a lot of attention [recently],” she says. “I have been working on this since 2017, when I got to college and a teacher didn’t think that I was sick.”
Robinson, then a student of fine art design and storytelling at the University of Southern California, used her art to tell her story. When a professor didn’t believe her invisible condition was real, Robinson transformed her scans and medical paperwork from over the years into visual art for an assignment in that class.
“I knew that the documents were black, white, and gray, thus creating a perfect opportunity to use pieces as highlights and shadows in the landscape,” Robinson says of her piece — a landscape of mountains meant to represent her journey with chronic illness. When her professor noticed the medical details interwoven into the piece, Robinson says, “her jaw hit the floor.”
That’s been a theme in Robinson’s life ever since: using tenacity and persistence to prove that she and other chronically ill creators deserve a seat at the table.
Diagnosed with EDS at age 11, the now-24-year-old Robinson has been living with chronic pain and frequent injuries for over a decade. Because of her other illnesses, she also lives with symptoms like frequent allergic reactions and lightheadedness. All of that might sound contrary to a model and advocate’s busy schedule, but Robinson credits a decision she made last year to start the medication Lyrica for nerve pain as a game-changer for both her health and her career trajectory.