For years, Gigi Robinson experienced the consequences of disbelief in her invisible conditions: friendships falling apart, family members dismissing her, professors not understanding her absences, and more. Robinson lives with Dysautonomia, Ehlers Danlos Syndrome, Postural orthostatic tachycardia syndrome (POTS) and Mast cell activation syndrome (MCAS), struggling with pain and flare-ups silently. Her epiphany came when she realized that not only was she not alone, but that by sharing her story, she could magnify the visibility of other people living with invisible illnesses in the world.
Now, you may find Gigi Robinson as face of brands like High Sierra, SmashBox Cosmetics, Tommy Hilfiger, and InternQueen. A model, influencer, and digital content creator with over 120K followers on TikTok and over 10K followers on Instagram, she spreads body positivity and cultivates community for individuals living with chronic illnesses. A talented photographer as well, her new book, Discourse Between Myself and the Waiting Room: A Personal Analysis on Invisible Illness, examines chronic illness through a first-person photographic lens.
Folks spoke with Robinson recently about the journey into her diagnosis, how she came out to the public about her chronic illness, and the glimmer of hope that gets her through her worst days.
Walk us through the early days of your diagnosis. How did you feel when you first found out?
I was diagnosed about ten years ago, maybe eleven, with Ehlers Danlos Syndrome, hypermobility and in the past year I’ve only been diagnosed with POTS and MCAS. I kind of got lucky because with invisible illnesses, specifically EDS, people often get misdiagnosed, which is one of the most difficult parts about it. It was initially shocking at first, but eventually I learned how to cope and live with it.
You were diagnosed fairly young. How did this impact you and your development?
When I was young, I had issues keeping friends. This was because I kept getting injured repeatedly as a child, which eventually led to my diagnosis. I had an ankle fracture, an elbow fracture, tore ligaments in my wrist, hurt my shoulder, and I reinjured my ankle, while my doctors’ were like ‘this is not growing pains’, you know? All of this happened when I was in between fifth grade and eighth grade, and I couldn’t really focus on anything besides the fact that I had annoying casts or braces on. In middle school, kids were really mean. I often got bullied because of what I looked like. And, truthfully, I still deal with all of that because people with an ableist perspective don’t have the capability to see that somebody that looks fine could still be sick.
People with an ableist perspective don’t have the capability to see that somebody that looks fine could still be sick.
How did your friends and family support you when you were still coping in the early years after your diagnosis?
This is going to sound pretty bad, but I blocked out the pain that I was having and feeling for a very long time. I told myself that my pain was not valid and it was totally fine. I elected to not get any treatment because I didn’t want anything to be wrong with me but my parents still supported me throughout the process. When it came to my friends, it was hard for them to understand what I was going through. It was difficult for me to communicate what I was going through. Even though I looked fine from the outside, some days I would experience an intense flare-up on the inside. While I have some close buddies I’m friends with to this day, my peers generally did not understand how chronic illnesses affected me.
What was your first experience with the disabled community? What role does it play in your life?
Last fall, a professor told me one day during class that he did not believe I had an invisible illness because he couldn’t see a wrist brace or cast on my hand. He told me that I could use my laptop if I did have a visible injury, totally invalidating the pain I had in my hand. For years, I’ve struggled with educators who did not believe I had a disability and this was a tipping point for me. I decided to find community by joining support groups in college and I just started making art about it, like photography, drawing, and paintings to express myself. It ended up turning into a photography book that I did my senior thesis on because I wanted to amplify my experience, particularly to the professors that did not believe me, and show that I am not alone in this battle.
For years, I’ve struggled with educators who did not believe I had a disability.
Tell us about the inspiration behind your photo book Discourse Between Myself and the Waiting Room.
The photobook came from a project, which came to mind after the initial struggle of my professor not believing me in class that one day. During last fall, I was also experiencing really bad flare-ups and felt super burned out while doing what he wanted me to do. Thankfully, this last spring, I switched to a new professor, who appreciated my own work and thought it was really powerful. It empowered me to further bring my vision to life of amplifying what I was going through living with a chronic illness. I started to bring my camera to every single doctor’s appointment that I went to, and from there, I started taking pictures of the journeys and rides there. The whole inspiration of starting the project was just kind of documenting what it looks like to live with chronic illness and how frequently I was in the hospitals under treatment. Ultimately, the book came to life but since the school semester last spring halted halfway due to COVID-19, I was not able to have my own gallery space to showcase all of the photos. Therefore, I published it all into a book which has over 1,500 reads online that makes me really happy.
What specifically inspired you to come out to the public about your diagnosis?
While the support groups gave me a sense of connection to the disabled community, I felt like I needed greater one-on-one connection from individuals, specifically experiencing EDS. I started posting about my story on social media, where I connected with a lot of people on TikTok and Instagram. I still get DMs and comments from people all around the world who tell me that they didn’t think anyone else had EDS and thank me for sharing my story. Knowing that I comforted somebody else with a post just by being courageous has kind of empowered me to speak out about my experience more.
Knowing that I comforted somebody else with a post just by being courageous has kind of empowered me to speak out about my experience more.
You started modeling a couple years ago. Did your illnesses cause any challenges in your career?
I got into modeling in college and I continue to do a lot of modeling on social media with a variety of different brands. When it comes to shooting on a set, I really make sure to create an open line of communication with the staff if I am having a difficult time, like a flare-up. Under the ADA (Americans with Disabilities Act), the employer has to give you reasonable accommodations that come after signing an offer. While shooting gets difficult sometimes, I try to foster open lines of communication, ask for breaks, and just be truthful and honest.
What have you been upto nowadays with the entertainment world coming to a halt because of this pandemic?
I worked with a media agency over the summer, where I focused on creating content through TikTok. Even though in-person shoots have been cancelled, I shoot from home safely with brand partnerships. It’s really been nice to showcase products that I believe in and also align with my values like body-positivity.
What are some things that give you hope as you navigate through your worst days?
I just have a positive mindset that sparks a lot of great energy in my life when I’m feeling really low or in terrible pain. On my worst days, I tell myself that if I can make it through today, I can make it through anything, which really empowers me.
On my worst days, I tell myself that if I can make it through today, I can make it through anything.
What would you tell someone who is newly diagnosed with an invisible illness?
I would encourage them to not be scared of it, but instead educate themselves about it. It may seem overwhelming at first, but I would recommend they surround themselves with people that are going through something similar. Even if it is not their own chronic illness, an online support group or network is really helpful in cultivating a community at this time.