What a year. For everyone, everywhere.
I saw a reel this morning on Instagram about the tumult of 2025 and the Year of the Snake, which symbolizes transformation and shedding. I can relate to transformation and shedding—over the last eleven months exactly, health issues and a limited capacity have led me to evaluate what’s important. I’ve learned who I can count on and who I can’t, and where I want to spend the energy I have. Heading into December, my world feels smaller than it did a year ago, but focused in the right places.
Some of you reading this will know these details already but a recap: On December 30th of last year, I woke at 3am with a severely swollen tongue. I went to the ER, where they assumed I was having an allergic reaction. I was not having an allergic reaction, a team of allergists, oral surgeons, ENTs, geneticists, and other specialists gradually realized as my symptoms continued for months. My tongue remained at least slightly swollen at all times; my hands and feet and random parts of my arms began to swell months later. The swellings are red and hot, and I was tested for infections and blood clots over and over. I went to the emergency room five times in 2025. They sent me away each time with steroids and antibiotics and referrals to more specialists.
I had blood drawn countless times, often for tests other doctors had already ran. I walked around half the year with bruises purpling my inner arms, my poor wracked veins hard to find and harder to stick. I brought stacks of printouts and photographs to my new specialists. Diagnosis after diagnosis was ruled out, until finally, very recently, two of my doctors found an answer. I have an autoimmune disorder that goes by many names: delayed pressured angioedema, delayed pressure urticaria, chronic urticaria, chronic spontaneous urticaria.
Angioedema means swelling, and urticaria means hives, and basically this diagnosis means my body interprets certain triggers like pressure as allergens and releases histamine that causes body parts to swell. The light pressure of my tongue resting against the roof of my mouth while I sleep, the pressure of resting my forearms on my desk as I work, of carrying a basket full of laundry or holding something heavy, or once just twisting the cap off a very, very tightly sealed bottle of tea—all of these things have caused my body to swell and welt, the reaction usually delayed several hours after contact, often in the middle of the night while I am asleep.
The connection between pressure trigger and the resulting swelling was nearly impossible to make.
My body thinks the pressure is an allergen. My actual allergies—all environmental, none food related—have little to do with the existence of my disorder, but do make it worse. In the spring, I had to wear a mask against the pollen or my tongue would swell. And while I do not have any food allergies, inflammatory foods like wheat, sugar, and artificial sweeteners can trigger the disorder itself, so my diet has gotten super clean.
The anxiety that came with not knowing what was wrong with me was often worse than my actual symptoms, so having a diagnosis has made flare-ups much easier to handle. I no longer go to the ER when my body goes haywire, instead riding it out at home with steroids and antihistamines that help reduce the severity of my symptoms but don’t prevent or eliminate them.
As with a lot of autoimmune disorders, mine is mysteriously systemic and there are other symptoms my doctors don’t have much response to. My hands are often stiff and sore as though I have arthritis (I do not), worse after a hand swelling but happens simultaneously in both hands even though only one swells at a time. My feet hurt; I learned to love sneakers this year. Flare-ups are connected to menstruation in a way that hasn’t been well studied, like most things in women’s medicine, but things are worse around my period. Sometimes swellings come with an upset stomach and general rashes and itchy spots around my body. And most of all, I am tired.
But we are getting there! I currently have an immunologist that I like and trust (shout out Arin Lee at VCU!). I’m learning what triggers me and how to avoid those things, and will be starting monthly injections of Xolair soon, a drug that has iffy results but could help. I feel hopeful and grateful to have some direction. The medical industry was not kind to me this year—I had doctors berate me and talk down to me, endless billing and insurance problems. The trauma of being sick in America is real.
This is not the transformation I would have chosen for myself, but it rarely is. I did not enjoy 2025 and at the same time I am grateful for it. Being exhausted and stressed and sore forced me to clear out the noise. I finished writing a novel, after fourteen years of trying. There is workshopping and editing to do, but it is a book. I read a lot this year. I photographed only the things I really wanted to. I spent a lot of time with my mom and a little time with good friends. 2026 is going to be a big year for me and I feel razor-sharp.
Photos from my novel-finishing celebration at Chimborazo Park in October. Polaroids by Amy Robison. Thank you for reading, you’re beautiful.