Last September, Gigi Robinson had a realization — the casting call for the 2022 Sports Illustrated Swim Search competition would open in January 2022 (anyone can enter, with finalists getting the chance to pose for SI photographers and appear in the iconic annual swimsuit issue), and she wanted in. “I was in Florida. I had my bathing suit. I decided to go for it. If not now, when?” she told herself.
It’s that kind of philosophy that helps keep the NYC native centered. “I view life as a stock market in my brain,” says the Gen Z thought leader who focuses on patient advocacy and chronic illness awareness. “Sometimes things are good and bad and happen right next to each other. Similarly, things come and go, ebb and flow, present themselves — and it’s up to you to take action.”
The fact that she has Ehlers-Danlos syndrome (EDS), a connective tissue disorder marked by overly flexible joints and loose, fragile skin (“It can cause easy bruising and migraine, chronic pain and fatigue, GI issues,” explains Gigi, who’s experienced all those symptoms.) didn’t deter her. If anything, it was a catalyst: “Just because I live with a chronic illness doesn’t mean I can’t be sexy and wear a bathing suit.”
In fact, she even posted her Sports Illustrated submission on LinkedIn to her network of more than 7,000 people, and to detractors who say, “Why would you post something about modeling and bathing suits on a professional site?” Gigi replies that her submission is not about ego or vanity; it’s about representation for people with chronic illness. It’s about raising awareness and helping other people living with invisible diseases feel less alone on their journey.
Confidence Through Acceptance
Although Gigi, who is currently working on a Master’s of Science at University of California, exudes incredible radiance and confidence, it wasn’t always that way. Getting diagnosed with EDS at age 11 meant living with a chronic illness that was often painful and sometimes debilitating throughout her teenage years; it meant having to give up the competitive swimming she loved. It meant visiting “probably close to 100 medical professionals over the years.”
“People see me online, they see I have this huge following, and think I have to be super-confident to get to this point. But what they don’t realize is that I used to be very shy — I carried so much shame around my experience as a disabled teenager and always hid it.”
She had to work to overcome the resentment she felt against her body and her genetics. “I didn’t take meds from 18 to 21 because I thought I could get over EDS on my own,” admits Gigi. “I remember sobbing the first time I had to take a wheelchair at the airport; I didn’t want to be ‘the other.’ But once I started allowing myself the grace to use accommodations, to start embracing the help that was available, I felt myself living a better life.”
Gigi also started opening up about her story on Facebook and other social media. “A lot of times we refrain from sharing with other people, especially when we have an invisible illness. But talking about this stuff really, really helps me connect with people. If you’re denying it too much, then I feel like you set yourself back — I have this thing, but I don’t want to have this thing, so I’m not gonna acknowledge it, and it’s not gonna be a thing that’s a part of my life when in reality it always will be. So I think that’s a moment of resilience and self-actualization that can help people through any difficulty,” said Gigi on an episode of her podcast, Everything You Need Is Within.
Coming Full Circle
Last March, Gigi learned she was one of 13 finalists chosen by the Sports Illustrated Swimsuit team to participate in a photo shoot in the Dominican Republic, becoming the first Gen Z and chronically ill model to appear in Sports Illustrated Swimsuit. For Gigi, who is a photographer herself, there was another magical aspect to the recognition: She would get to shoot with renowned photographer Yu Tsai, “someone I’ve looked up to since I was a child.”
Says Gigi, “I got to be the representation that I wanted to see in media. I have been advocating for no retouching on images for years. I have wanted to see representation of people with body image issues for years. So for this to actually happen was full circle for me and very beautiful.”
Here, Gigi shares some of the strategies that help her navigate life with an invisible chronic illness:
Give yourself the gift of grace. “I just had a two-week travel extravaganza,” says Gigi. “I was in Miami, Ithaca, Denver. Yesterday, I slept till 1 o’clock — I was in pain and fatigued. But I don’t hold that against myself. If I have to take a day off or sleep in a little, that’s okay. There are days I don’t leave the house at all. I’m gonna try and go on a walk later.”
Be your own patient advocate. In addition to EDS, Gigi also has postural orthostatic tachycardia syndrome, mast cell activation syndrome, and temporomandibular joint disorder, so doctor visits are part of her life. She makes her preferences very clear to her health care team — e.g., “I step on a scale backwards. I don’t want to know my weight; I don’t need to know my weight.” She’s also comfortable declining the presence of a fellow in the exam room. “I’ll say, ‘I don’t want the fellow in the room. I have been through enough. Yes, I’m a patient. And, yes, I can help when necessary, but it’s not my responsibility to tell a fellow about my medical records when they should have read them before entering the room.”
Go in with a pain plan. Usually, that entails quite a bit of trial and error, says Gigi. For a severe back pain issue she’d been struggling with, she proposed to her doctor starting with acupuncture. If that didn’t work, she was willing to add on physical therapy. And if that still didn’t do the trick, she would try acupuncture, physical therapy and a steroid injection. As it turned out, Gigi eventually stepped up her therapy to medication and underwent laparoscpic surgery.
Be willing to ask for help. When Gigi was on set for the SI photo shoot, she got her period and it turned out to be a particularly painful one, which is common in women with EDS. Beside turning to her tool kit — meds, heating pad, hydration — she requested golf carts to get to and from the set. “I am fearless in an. Beside turning to her tool kit — meds, heating pad, hydration — she requested golf carts to get to and from the set. “I am fearless in asking for this,” says Gigi. “There are things that are there to help you. You just have to ask for them.”
Set clear boundaries. Gigi understands the importance of knowing her limits and is not afraid to say no when she’s not up to it. For example, she’s told friends and family: “I appreciate you wanting me to be a part of this, but physically I don’t have the energy and I know I will be in pain later. As someone who love me, I hope you understand.’ She says having scripts like this and practicing them in the mirror is important. “A lot of people don’t do it, and they get a little bit frazzled by the way other people are going to judge them. You need to let go of that fear of judgment.”
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