Model Gigi Robinson Enthusiastically Uplifts Those with Chronic Illness

Gigi Robinson wakes up every morning eager to take a bite out of life. “My passions in life vary honestly, from making people feel their best to shooting content, to traveling, I try my best to just live life to the fullest and enjoy every moment. Every day I start my day with breathwork. It is something that has really given me an escape, a place to reflect and focus on one thing, my breath. I also love moving my body in ways that make me feel good, like walking and water aerobics.” The model/social media influencer/masters student can’t find a single aspect of creating she doesn’t like. “I love all of it. From learning posing to understanding the way that cameras work to lighting, I have always put a focus on making people feel their best, whether that’s while I am in front of or behind the camera. I also love being able to create photos that tell stories and empower people that way. When I focus on creating and building a business, I also find ways to tap into my brand ethos in my content; meaning I really love to make people feel a certain way when they consume the content. The one other thing I love is receiving DMs from people saying how my content has inspired or helped them in their self-discovery journey.” 

Her career was catapulted into the stratosphere when she was noticed by legendary Sports Illustrated editor, MJ Day. “It was iconic and validating to have conversations with such an inspirational person. MJ is someone who changes lives; she gives people a platform to share and express themselves in ways that sometimes words can’t describe. It is super awesome that I found a way of catching MJ’s attention through a professional platform like LinkedIn. Advocacy and modeling are a career and sharing it on LinkedIn was just the beginning of getting support from global brands, like SI. As an advocate for mental and chronic illness, I found this experience to be so special to be a part of. Holding space in such a world-renowned magazine for all kinds of people, including those struggling with invisible illness like myself, feels surreal. To be the person that openly represents that is an honor that I will hold forever!” Gigi loved learning about other finalists and was humbled by the realization that they are all agents of charge. “Being a Swim Search finalist is an incredible feeling, again it feels surreal that I was able to be a part of it. Meeting the other women chosen to be a part of Swim Search was one of my favorite parts because everyone has their own story of empowerment in their own niche. It also was incredible to meet the team moving and shaking industries and making change through swimwear; how cool is that? Being a part of something like this really helped me gain clarity to know there is a need for disability and chronic illness representation in the modeling industry and in the public eye.”

Gigi’s own journey hasn’t been easy. At 11, she was diagnosed with Ehlers-Danlos syndrome, a connective tissue disorder. “I was diagnosed so young that I honestly didn’t understand or realize what was happening to my body. I had 504 disability accommodations in place to help me manage my condition as well as constant physical therapy and doctor’s appointments to manage my pain growing up. It took me until my college years to fully comprehend the magnitude that this condition would have on my life and how it would affect everything that I do. During my college years, I had so much trouble managing my health that it led me to a really difficult burnout period where I ultimately got inspired to start publicly sharing my journey with EDS.” As Gigi points out, the condition can vary widely based on the individual. “I can explain my experience living with EDS, which is different from how a doctor might describe EDS. From my knowledge and diagnosis, EDS is a connective tissue disorder that affects all patients differently. I experience chronic pain and fatigue, easy bruising, and injury. However, as always, I highly suggest gathering information from medical platforms when explaining what EDS is, although patient experience is just as important!” In her case, the effects are unpredictable and difficult for others to understand. “EDS causes me an immense amount of pain. It’s uncontrollable and sometimes indescribable. From walking around experiencing lower back pain to randomly getting shoulder pain to picking something up wrong, any moment can cause a flare up. It has been tremendously difficult for me to explain this to friends and faculty at times when it comes to my ability. This is why I am so adamant about self-advocacy when it comes to chronic illness; again, because it affects everyone differently.“ She’s determined to be the source of visibility and comfort she needed in the wake of her own diagnosis. “I felt so alone growing up. As a part of a digital-first generation, I grew up with people figuring out what they should and shouldn’t share on social media, let alone in real life. Over the past decade, conversations around health and wellness have shifted away from how physically fit you may be to how mentally fit you are. For me, I did not have someone to look up to talking about invisible illness online and in person and thought to myself, ‘What if I became that person to other people growing up and dealing with this now?’ That is really what inspired it all and let me tell you, I think 11-year-old Gigi would feel at peace knowing that other people deal with the same stuff she does.”

We all need to remember that chronic illness never looks a certain way and to honor everyone’s right to communicate their feelings and needs on a day-to-day basis. “As I have said many times before, you can feel like shit and still look sexy. From the time I was a child, people always told me that I was too young to be sick or looked too pretty to be sick and that’s such a narrow view to cast onto a person. Again, as a teenager, I did not know how to confront those kinds of comments. I just kind of nodded and shrugged my shoulders. Chronic illness looks different for everyone and it can be so dynamic as well. One day I could attend an event wearing heels, the next I could be stuck in bed in chronic pain. Today however, I make sure that I am clear on my boundaries with people and make sure to share what is really going on with anyone, especially since I do share it publicly. You never know how your body is going to react so it is really important to be respectful to someone when they may be in pain.” Gigi is overwhelmed with joy at the positive response her openness has received and she knows her advocacy has just begun. “The DMs I receive daily inspire me to continue doing this. It makes me incredibly proud knowing that being vocal about my condition has inspired other people to have conversations with their friends and family about what they’re going through, helped students get accommodations they need, and made other people feel less alone in their journey. It is so fulfilling to me, and I know my work is not done.” When we are brave enough to open up about ourselves, you never know what doors you might be helping to open for other people. 

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Model Gigi Robinson Enthusiastically Uplifts Those with Chronic Illness. Photo Credit: Sophie Sahara.

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