Gigi Robinson isn’t your typical model. You’ll find all the usual content from influencers on her Instagram and TikTok pages — dispatches from New York Fashion Week videos, GRWM videos, behind the scenes footage from movie premieres, and more. Gigi will also share a unique look at the daily struggles of living with multiple chronic diseases.
Robinson may have been featured in headlines. Robinson is the Sports Illustrated Swimsuit Model who has also been open about her three chronic conditions. One of them is Ehlers-Danlos Syndrome (EDS), a rare genetic condition that affects the body’s connective tissues. Mast Cell activation Syndrome (MCAS) is a condition that causes anaphylaxis symptoms like hives, difficulty breathing and swelling. Postural orthostatic Tachycardia Syndrome (POTS) is a disorder that affects the autonomic nervous systems.
Behind the headlines and diagnoses, there is a young woman with more multi-hyphenate talents than any other, who combines skills in photography, patient advocacy and digital marketing.
Robinson says that “this didn’t happen overnight” after her recent successes, which include a podcast deal for Spotify and the closing of the Runway of dreams adaptive fashion show. She says, “I didn’t fall into health advocacy even though it has received a lot attention recently.” “I have been working in this area since 2017 when I went to college, and a teacher did not think I was sick.”
Robinson was then a student of fine arts design and storytelling at University of Southern California. She used her art as a way to tell her story. Robinson created visual art from her scans and medical documentation to prove that her invisible condition wasn’t real.
Robinson describes her piece as a landscape made up of mountains that represents her chronic illness journey. Robinson said that Robinson’s jaw dropped when she saw the medical information interwoven into her piece.
Robinson has been living this theme her whole life: using persistence and tenacity to show that she and other chronically ill creators are worthy of a place at the table.
Robinson, now 24, was diagnosed with EDS when she was 11. Since then, Robinson has lived with chronic pain and injuries for more than a decade. Due to her other illnesses, Robinson also experiences lightheadedness and frequent allergic reactions. Robinson acknowledges that all of this may seem contradictory to her busy life as a model and advocate. However, she credits her decision to begin Lyrica for nerve pain last year for changing her career and her health.
Robinson states that medication was something mentally unable to handle. “Medication was something I was mentally like, “I’m not going do this, this isn’t necessary, this is not what I want for the rest of me,” Robinson said. “But the quality and amount of life that I have this year is so much better than last year, and I’m so grateful that I did that.”
Robinson stresses, however, that despite her sometimes-glossy Instagram feed, Robinson still lives with the effects of her conditions every day and has created her own coping strategies to balance her career goals and her symptoms.
Robinson states, “Productivity is what you often lose when you have a chronic disease.” It’s the first thing you lose when your time is spent managing this condition. This includes going to doctor’s appointments and explaining yourself in conversation.
Robinson spent so much time managing her symptoms and navigating an often difficult world that she decided to “double dip” — instead of choosing between being a professional patient advocate and a successful photographer, model and businesswoman, Robinson wraps her identity in her creative pursuits. Robinson stresses the importance of all that goes on behind the scenes. This is part of living with invisible disabilities.
Robinson states, “I always have my medication close by me at all times for any emergency,” “When I travel, I have the accommodations at the airport so I can take my wheelchair to the gate. This really helps with my chronic pain.”
Robinson’s top products for managing symptom management are Hyaluronic Cloud Hydragrel eye patches for MCAS-related puffiness, and Vagus Nerve Pillow Mist to promote a more restful sleep. She is a Sports Illustrated model and has a recommendation for swimwear. Kitty and Vibe sells bikini bottoms that are sized by the waist, not the hips, and they also offer a range of sizes.
Robinson believes that the platform she has created is more than just beauty. It’s about advocacy. Robinson was diagnosed 13 years ago. Before the advent of online community platforms, Robinson needed to look for support groups in person and other ways outside of the box to understand what she had been through.
Robinson states that the support group was a comfort in realizing “wow…this wasn’t in my head, other people have this,” Robinson said. “And I realized how important it was to have that support and a community that was close. So when I was feeling down I began posting about my struggles on Instagram…and I discovered that people really care about this.”
Gigi’s social media following has grown to 132,000 on TikTok, a sign that Robinson is not the only one who wants to build community around her invisible disability experience. Robinson takes her large platform seriously.
Robinson states, “It’s really helped my grow, not just with my social media, but also as a person understanding the power my words, the power my images, and the power that the community has.” “I just want people to feel less alone.”