Model and chronic illness advocate Gigi Robinson was first diagnosed with Ehlers-Danlos syndrome (EDS), a group of connective tissue disorders, when she was 11. Since then, she’s made the most of her reality with the chronic condition, using it to fuel her role as an activist and making headlines as the first Sports Illustrated Swimsuit model who openly battles chronic illness.
But little did she know, EDS wasn’t the only chronic condition she’d been living with.
“When you have a chronic health issue, it can just feel so daunting and so lonely and so never-ending. Now, I’m going to have a journey not only with Ehlers-Danlos my whole life, but also with endometriosis.”
For “years and years” Robinson had back pain, stomach pain, and pelvic pain, which doctors always related to her EDS. “I’ve just lived with [EDS] and managed it, but I didn’t really think there could be another thing on top of that,” she tells POPSUGAR. Her doctors tried an array of treatments, from acupuncture, massage therapy, water aerobics, and physical therapy to different medications and cortisone injections, the last of which she had an averse reaction to, which was the final straw.
“It felt like nothing was helping,” she says. Eventually, her doctor said, “I think it might be time to see a gynecological surgeon . . . to take a look and see if there’s endometriosis there.” She recommended getting a diagnostic laparoscopy, which is used to examine the abdomen or pelvis and diagnose conditions such as endometriosis.
Though this moment finally offered a potential answer, Robinson put it off. “[For] a year and a half, I postponed the surgery. I found every way to avoid it with work, with social, with just my career as it was with my public speaking and traveling,” she says. “I think part of that was because I just didn’t want another diagnosis. I was running from it.”
She finally made it to the doctor for a laparoscopy in December 2022, and her second chronic illness diagnosis was confirmed: “When [my doctor] came to visit me at my bed, she’s just like, ‘I just wanted to let you know we did find endometriosis in quite a few places and it’s confirmed. I really hope that now we can focus on the relief.'” During the surgery, once Robinson’s doctors confirmed the endometriosis, they also removed some of the tissue. Robinson shared the news via her social media accounts later that day with the hashtag #endowarrior, writing, “Bittersweet announcement. After my surgery this morning, I was officially diagnosed with endometriosis. While I am not thrilled about this, I am relieved to know what has been causing me back, pelvic & abdominal pain all of these years.”
Endometriosis, which affects up to 10 percent of people with uteruses, happens when the tissue lining the uterus begins growing on the ovaries, fallopian tubes, and other places outside of the uterus. It can cause severe pain and lead to additional health problems but is frequently misdiagnosed and often goes untreated for years.
When Robinson was diagnosed with endometriosis she felt relieved: “I finally [had] this extra confirmation of the invalidation of my pain,” she tells POPSUGAR. “It’s like, wow, it wasn’t in my head. The medical system — not saying that every doctor’s a bad doctor — but they didn’t do their due diligence.”
Her recovery from surgery was challenging; she spent 10 “pretty awful” days feeling miserable and being almost entirely immobile. “I’m used to chronic pain, but this acute pain was so bad that I lost it,” she says. “Luckily, I [was] staying at home with my family and they were just so, so incredibly helpful and supportive during this time.”
But the healing wasn’t only physical. “I took the two weeks to fully experience and live in this moment for me to process and realize: ‘It’s okay. It wasn’t in your head, and now you can just heal,'” she says. “It’s like a closure. It’s a really bittersweet and melancholy kind of feeling . . . I didn’t want another diagnosis. I didn’t want to have endometriosis. I didn’t want to have another thing wrong.”
Endometriosis and all its repercussions have been “a lot to wrap [her] head around,” she says, including pondering what this means for her fertility and the potential to eventually start a family. There’s a “really scary feeling of hopefulness that things are going to work out and helplessness that it might not,” she says.
Her goal, however, is to remain positive. “When you have a chronic health issue, it can just feel so daunting and so lonely and so never-ending, ” Robinson says. You may also feel burdened by feelings of “guilt, shame, and sadness because you’re probably going to have to step back from social things or from work things at times,” she adds.
With two conditions to manage Robinson knows she’ll have more on her plate, but she’s committed to living life with her conditions rather than living around them. “It’s like: How can you live life with the parameters that you’re given, how can you manage your symptoms and do everything that you want still?” she says.
“Hopefully, the treatment that they say is going to work works . . . and hopefully, I’m able to have this new closure and I’m able to focus on healing, which is what I would say everyone who gets a new diagnosis should focus on in the moment,” she tells POPSUGAR.
For Robinson, endometriosis treatment currently includes a Mirena IUD as well as acupuncture, massage therapy, and physical therapy. It’s been about two months since her diagnosis and the start of her treatment, and she doesn’t know how well it will work in the long run, but one thing she does know is that she “will not stop advocating for women and what they’re going through,” she says.
Using her platform on social media and as the host of the podcast “Everything You Need Is Within”, Robinson wants to help make sure other people are seen and heard, both in the doctor’s office and in all the other ways chronic illness plays out.
“Getting a diagnosis affects every part of your life,” she says. But many people shy away from talking about it in the workplace, academics, or socially, she adds — perhaps because of the associated stigma and our cultural obsession with being “well.” Her main goal is to “help people feel less alone” and to “use a positive mindset to be the most confident and the best self-advocate that they can be,” she says. We need to flip the script on the ways we approach and perceive chronic illness, Robinson says. For example, “What does the nine-to-five look like for someone who’s sick? How can other people support them in a part-time role, in a full-time remote role? How can you have flexible work hours that accommodate that?” she offers.
“In the world that we’re living in, everybody — fortunately or unfortunately — is dealing with something at some point,” she adds. It’s about time we make sure people feel okay talking about their health in different circumstances and can truly be their best advocate. “I think it’s important to just recognize that if you do suspect that something is wrong inside and that your intuition’s telling you to keep going, to keep looking for your health, then you should.”
— Additional reporting by Maggie Ryan
Image Source: Courtesy of Gigi Robinson