With an infectious laugh and inviting presence that radiates through our FaceTime call, speaker, author, and advocate Gigi Robinson is the definition of main character energy. With over 150,000 loyal followers across Instagram and TikTok, the 23-year-old speaker, author, and content creator has cultivated a strong presence on social media where she educates her audience about chronic illness, body confidence, and mental health, while candidly sharing her personal experiences. Gigi spoke with Her Campus about what it’s like living with chronic illness, self-care, and the importance of keeping a positive mindset.
“Able-bodied people often can’t imagine a life with chronic pain, but I can’t imagine a life without it,” Gigi tells Her Campus. At age 11, she was diagnosed with Ehlers-Danlos Syndrome (EDS), a group of inherited disorders that affect the body’s connective tissues. Learning to navigate her diagnosis has been an ongoing journey, and Gigi recalls how difficult it was when she first learned of the condition.
“When I think back to my middle school self when I was diagnosed, I was so ashamed of it,” Gigi says. “I didn’t have anyone to talk to or look up to. I still have pictures of myself from my first day of sixth grade — I had a sling on my arm, then on my first day of seventh grade, I had a cast on my ankle, and I was in crutches. That was the reality for me.”
Like many individuals who live with chronic illness — particularly “invisible” illnesses — Gigi found it challenging to share her experience with others early on, including with close friends. She tells Her Campus, “My friends would say, ‘can you hang out?’ And I couldn’t because I’d have to go to a doctor’s appointment, but I couldn’t express why. I couldn’t say ‘I have something going on in my body that I can’t change.’ I was always tip-toeing around it.”
When Gigi began college at the University of Southern California years later, it was difficult to balance EDS with a fast-paced college lifestyle. “It became the forefront of my everyday life,” she says. “I was in physical therapy at 6 a.m., then I’d have to run home, grab my textbooks, and I’d be late to class. I always thought, ‘how can I do what I have to do without physically taxing myself?’”
According to Healthline, Ehlers-Danlos Syndrome is an inherited condition that impacts the connective tissues in the body, which are responsible for supporting and structuring the skin, blood vessels, bones, and organs. It can be difficult to test for and diagnose, with symptoms varying widely from person to person — some of the most common being hypermobility, chronic pain, and fatigue. According to the National Library of Medicine’s Genetics Home Reference, EDS affects approximately 1 in 5,000 individuals worldwide, and can often go undiagnosed due to its complexity (there are thirteen different subtypes). For Gigi, the invisible nature of her condition eventually began to affect her academic life when college professors refused to believe that she was experiencing chronic pain.
“I started having issues in college with my professors and friends not believing me,” she tells Her Campus. “They’d say, ‘oh, you just aren’t doing the work.’ That’s when I decided to create my senior thesis, called Discourse Between Myself and the Waiting Room. It’s a photo essay that details my experience and brings people through little moments of what I experience every day — in the hospital, in the waiting room, at appointments, and always.”
Gigi’s project, now an e-book, sparked conversation for both people living with disabilities as well as those interested in becoming better allies. “Once the e-book was live, I started receiving messages and emails,” she remembers. “People were moved that I was talking about something that, unfortunately, many students — with invisible and visible illnesses — deal with in college.”
While the release of Gigi’s e-book marked a pivotal point in her journey, much of her advocacy and community building takes place on social media. In 2020, she began an IGTV series featuring expert commentary on topics like chronic illness, mental health, media, and more. On Gigi’s TikTok, you can find videos about living with EDS, how she balances creative work and chronic illness, reflections on body image, and more. Additionally, Gigi has worked with organizations like The Trevor Project, The Jed Foundation, Yahoo, and more to educate others about critical wellness topics while championing diversity and equality.
When asked how she gained the confidence to speak about her disability, Gigi says that practicing body acceptance has played a key role. “My doctor once said, ‘Aren’t you mad at your condition? Or that it causes you pain?’” Gigi tells Her Campus. “But I’ve been dealing with this for half my life. I responded and said, ‘if I spent my whole life mad at the fact that the sky is blue, I’d have a pretty bad life. If I can’t change the sky being blue, and I can’t change my body having this condition, I can’t be mad at it — it just is.”
Gigi also highlights the importance of mindset work and maintaining a positive outlook, especially when things feel difficult. “[Living with a disability] does suck sometimes. It’s frustrating to know that in every single thing I do, my body is betraying me. But I try to shift my mindset. I want to do everything possible — physically and holistically — to see if my body can heal before focusing on being sad that my body will never change.”
While attending school at USC, Gigi worked with an occupational therapist who focused on lifestyle redesign for individuals who experience chronic pain. Today, she continues to practice self-care in a variety of ways, from working with sleep doctors to practicing mindfulness, meditation, breathwork, and more. “I’m working with a chronic pain psychologist, which is a very new thing,” she tells Her Campus. “I get weekly acupuncture for pain as well — I know it’s one hour where I can just breathe.”
As Gigi connects with me on FaceTime from her neighborhood in New York City, she turns the camera and points out the nearby park where she regularly visits to unwind. Spending time in nature and going on walks with her dog is a favorite form of self-care, along with beauty rituals, which help her feel like she can tackle the day. “I honestly love haircare and skincare,” she says. “Anyone who comes to my social media page knows I’m so big on my hair and skin. It gives me confidence. If my hair and skin look good, I feel good!”
Apart from being a successful speaker, author, and wellness advocate, Gigi is also a working model, photographer, content creator, and media personality. And despite her jam-packed schedule and the variety of projects she is juggling, she strikes me as calm, grounded, and encouraging with an air of unshakeable confidence. “I’ve always been a go-getter, but very quietly,” she tells me as she glances at the city skyline from her balcony. “Now, I’m shameless. Whatever it is, I’m going to go for it.”
When asked for any final words of wisdom, Gigi takes a beat and remembers her younger self, shortly after being diagnosed with EDS. “I was always told ‘you’re so beautiful!’ which is so easy to say. I wish I would’ve told myself, ‘be confident in who you are, and don’t be ashamed of it.’ If I can share my story and make someone, somewhere — who just got diagnosed with something — feel seen, then I’m doing something right. That’s what keeps me going.”
Mayo Clinic Family Health (2021, July 22). Ehlers-Danlos Syndrome. MayoClinic.
U.S. National Library of Medicine (2020, August 18). Ehlers-Danlos syndrome: MedlinePlus Genetics. MedlinePlus.