I was 16 when I had my first flare—or at least the first I can clearly recall. At the time, I didn’t know what it was, but I knew something wasn’t right. When I finally got diagnosed with ankylosing spondylitis (AS) right before my 28th birthday, I felt relief. After years of being told it might just be in my head, or that it was my fault, it was validating to know that no, I wasn’t doing anything wrong. This is just my body.
There’s this whole culture of blame around chronic illness. You hear, “Oh, if you just changed your diet,” or “If you exercised more,” or “Take these vitamins.” But learning that this is a genetic, systemic, and progressive disease helped me realize that it’s not because I’m not trying hard enough. There’s nothing to fix about my personality or lifestyle. This is a medical condition. Getting that diagnosis gave me not just relief, but some empowerment too. Now that I knew what I was dealing with, I could start learning how to manage it.
That said, it was also scary and isolating. I didn’t know anyone else in my circle with this diagnosis. I even posted on social media, “Hey, I’ve just been diagnosed with this—do you or anyone you know have it? I’d love to talk.” And I got nothing. That silence really reinforced how alone I felt. That’s when I started searching for support groups, like the ones offered by the Spondylitis Association of America (SAA). I was lucky to find other people, including younger folks, who were navigating the same thing. And I found others who’d been diagnosed for years, who had so much wisdom to share.
When I lived in New York, I was part of the New York chapter of the SAA. During the pandemic, we kept meeting on Zoom. A smaller group branched off—SpondyStrong—and we’d meet for movement/yoga sessions, which were really helpful. Sandra [Voss], who led the New York chapter at the time, is a yoga instructor and Alex [Levine], who helped run the group, is a certified fitness coach. So we had the regular group for community, and then this smaller space for movement and mindfulness, which was great.
AS, unfortunately, doesn’t have the best branding. Rheumatoid arthritis is the one people recognize. But with AS, people don’t even know how to say it, let alone understand it. When I try to explain it to others, I usually say, “It’s an inflammatory arthritis that primarily affects my spine, but it also impacts other organs, like my eyes.” And from there, people usually ask more questions. I try to use whatever platforms I have, like my art and my YouTube channel, to bring more awareness.
Art has been part of my life for as long as I can remember. My mom likes to say that while my older brother was running around the house, I’d sit for hours with crayons and paper, completely content. Creativity has always been my way of processing the world.
I went to Hartford Art School in Connecticut and graduated in 2007 with a degree in graphic design. I worked in the fashion industry for ten years. But outside of that, I was always making fine art—painting, doing shows, going to artist residencies. Eventually, I decided to take the leap and become a full-time artist six years ago.
Before making that decision, I saved up for a year. I’m a bit of a planner, and I didn’t want to start out worried about how to pay my bills. Having at least six months of runway gave me the freedom to focus on my art and not work from a place of fear.
One of the most helpful tools has been YouTube. On Instagram, you get maybe two seconds of someone’s attention. But on YouTube, people are listening, watching, following along. I post videos of myself creating a piece of art. I’ve had collectors find me through YouTube, watch me create a painting, and then decide to buy it because they feel connected to the process.
Being a full-time artist also gives me autonomy over my schedule, which is essential when living with a chronic illness. If I don’t feel well in the morning but can be on my feet in the evening, I can shift my work hours. And if I have to be on the phone with my specialty pharmacy for four hours—which happened recently—I’m not missing meetings or deadlines.
Right now, I’m at an international residency in France called Chateau d’Orquevaux Artist & Writer Residency. When I do these kinds of residencies, I always do prep work. I check in with my rheumatologist, get bloodwork done, and make sure I’m cleared to travel. I travel with a cold case for my biologics and make sure wherever I stay has a refrigerator. And I let the residency coordinators know in advance that I’m dealing with a disorder so they’re not surprised if one day I’m fine and the next I’m limping.
When I’m at a residency like this, I try to lean into the opportunity and let my creativity fly. Right now, I’m working with symbols and shapes I’ve found in the French countryside—everything from old churches to flowers and trees. I’m using them in my usual bright, abstract, layered mark-making. It’s like a visual diary of my time here. I’ve also had the opportunity to create alongside so many amazingly talented fellow artists and form true lifelong connections while on this residency. A great reminder that community is so very important in life and to not take quality time with others for granted.
The disease has made me more of a planner, more organized, more intentional. Physically, I have to be mindful. I can’t sit or stand for too long. I pin my work on the wall sometimes just so I can move around more. For murals or art fairs, I always hire an assistant. I learned that the hard way after trying to do my first solo fair; I ended up crying on the phone to my mom because my back and feet hurt so badly after attempting to hang my booth display alone. Now, I ask for help when I know I will need it.
If I could talk to my younger artist self, I’d say: trust your intuition. Lean into abstraction, even if school tries to push you away from it. And to someone newly diagnosed, I’d say: give yourself grace. Be patient. This is not an overnight fix. It takes time to figure out your symptoms, your treatment, your pace. And that’s okay.
Balancing consistency in my art practice with the unpredictability of chronic illness is hard. It’s something I’m still learning. But I do know this: art helps me cope. I think that’s why joy shows up so much in my work. When you live with chronic pain, you find yourself searching for “the joy” wherever you can. And the process of creating—of making something meaningful, even through the pain—is inherently joyful. For me, it’s what keeps me going.
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