For those living with a chronic or invisible illness, it’s more than physical. Navigating the ebbs and flows of these conditions is a daily challenge that impacts every facet of life—from mental and emotional well-being to social life. Often bringing feelings of isolation, the silent nature of chronic illnesses means you may frequently be misunderstood or overlooked by others.
Luckily, people like 26-year-old Gigi Robinson, who’s lived with Ehlers-Danlos Hypermobility Syndrome (EDS) and Endometriosis for over 15 years, exist. As a chronic illness and mental health advocate, Gigi’s goal is to show others with chronic illnesses how to advocate for themselves and live a fulfilling life. Fighting common misconceptions about what chronic illness is and “should” look like, she offers a realistic window to empower others like her.
Here, we chat with Gigi about her chronic illness journey, her self-care and fitness practices, plus tips on how to navigate chronic illness and build up confidence.
What inspired you to become a chronic illness advocate?
My journey to becoming a public speaker and creator started when I realized that people didn’t believe the pain I was going through—both those at school and even doctors. I began by sharing my health experiences online. I figured, what better way to show rather than tell than by using my art skills to show the world what life with chronic illness is like.
I have spent a majority of the past 4 years figuring out different ways to engage with and support a community of people online dealing with chronic illness. Right now, my time is spent between consulting, social media strategy, public speaking at major conferences, doing brand partnerships with amazing brands, working on my next book, and more.
What’s been your personal journey with chronic illness and mental health?
I was diagnosed with EDS when I was so young—around 10 or 11 years old. I’ve been through many different iterations of living with these conditions. Growing up, I didn’t understand why my body wasn’t working the way that other kids’ bodies worked. Instead, I had to put in a little extra effort and take the time to navigate the world in a way that worked for me.
As I’ve gotten older, I’ve realized how important it is to advocate for yourself and discuss different treatment options with your doctors. In my experience, I’ve found that sometimes, you have to talk to a variety of doctors, get a second opinion, or even try out different treatment plans before finding what works best for you.
For me, that meant trying different medications, holistic treatments, acupuncture, massage therapy, gentle movement and physical therapy, meditation, and even surgery. After all of that, we were finally able to figure out the root cause of some of my chronic pain: systemic inflammation from endometriosis.
When it comes to living with chronic illness, mental health is just as important, if not more, than physical health. My journey with mental health has been about mental resilience and figuring out ways to handle and cope with changes to my physical body.
What are some common misconceptions surrounding chronic illness you’re working to break?
The biggest misconception around chronic illnesses is that you have to look a certain way to fit into society’s idea of what illness looks like. The reality is that anyone can experience chronic illness at any point, and it actually can look different from person to person.
It can even be invisible, which is the hardest part about living with and dealing with a chronic illness. I think breaking that misconception consistently is the most important thing when it comes to my advocacy.
What has helped you maintain a positive outlook while managing a chronic illness?
Meditation, mindfulness, and holding a lot of space and compassion for myself has really helped me over the years. It can be so hard and very lonely when people don’t understand what it’s like living with an invisible illness.
Also, communicating boundaries with your loved ones, family, friends, partners, and even in the workplace can be absolutely essential. The more you talk about what you need in order to live your life, the more compassion and empathy others will start to feel for you.
How do you envision the future for those with chronic illnesses?
We focus a lot on physical illnesses, and not enough on what happens mentally and internally. Hopefully, we get to a point where people understand one another and do not judge each other based on what they may be going through.
Social media makes it extremely easy for people to live parasocial lives, thinking they know everything about the people they interact with and see online—which is not the reality. I hope that we develop new ways for people to enjoy social media while also using it as a tool to navigate their lives instead of relying on it for their happiness.
What advice would you give to those navigating life with a chronic illness?
I think feelings of isolation and difference are inevitable for people living with chronic illness because they are inherently dealing with something that a lot of others will never experience. It is important to remember that you are going to continue to have issues with your health, and they will ebb and flow throughout your life. Coming to terms with the fact that part of your life will not likely change is essential to finding your own happiness and living to the fullest.
Figure out ways to combat your own isolation and loneliness with things that you love doing and people you enjoy being around. Journaling about what causes you to feel lonely or isolated is also super helpful. Processing things like, are you sad because you can’t do certain things, or because you constantly have to say no to friends, or because you feel misunderstood? Once you pinpoint the issue, you can begin to dissect it to create a roadmap to live your life by and communicate with others. By doing that, you will be one step closer to battling your own feeling of difference.
How do you practice self-care, wellness, and movement in your own life?
It really varies depending on my body. When I have a flare-up week, you can find me in bed or on my couch watching TV or reading a book with my pups, Zeke and Trixie, right by my side. Meeting myself where I am at is SO important because some days, all I really can do is the bare minimum. Not feeling guilty about that has taken me SO long to come to terms with. But it makes my good days one thousand times better because I realize and appreciate how capable I am.
I try to do 1-2 days of yoga per week, 1-2 days of pilates (mat) and then one HIIT (high intensity interval) class, sometimes with obé! For self care, I love taking my dogs to the dog park. I go almost every day. I get to socialize with other dog parents, AND my puppies have the best time ever.
What practical tips or frameworks can you share to help women rebuild appreciation for their bodies?
Similarly to self-care and wellness, you have to meet yourself where you’re at. Sometimes that means you might have to change your outfits three times until you’re wearing the most comfortable one or the outfit you think you look best in. Also, make sure you’re using food to fuel your body instead of using food or abusing food to look a certain way.
The biggest thing I see people do is compare themselves to other people in real life AND online. The best thing you can do to prevent yourself from falling into the comparison trap is through compassion for yourself. If you don’t like how you look, focus on things you do like about yourself. If you don’t like how you feel, focus on ways you can feel better!
I don’t have a specific answer, but you should focus on meeting yourself where you are now, not where you want to go or what you want to look like in a year. A lot of us place unrealistic goals on ourselves, so staying present and doing what makes us feel best is the biggest piece of advice I can give you.
What’s something you think women deserve to speak more openly about and why?
Honestly everything—from body image and food to health—both physical and mental—finances, and work. We don’t get enough credit for everything that we manage and deal with, so I think if we celebrate our little wins more, it would be beneficial for all women!
One thing you’d tell your younger self?
It’s always important to focus on ways to support yourself in a positive way. We have SO many negative thoughts every day, so it’s key to combat that and treat ourselves with more empathy. That is also something I work on every single day. I am NOT an expert yet, but I’m slowly nurturing and training that mental muscle every day.
