Suddenly Allergic to Everything
An Illness Narrative: Essay 1
The drive to and from work was a three hours Monday to Friday through rural Virginia where the only traffic jam I had ever encountered was a herd of cows that had gotten loose.
Lately, on the drive home, I’d feel the roof of my mouth start to expand and tighten. Like my throat decided it was done with the whole open-airway breathing arrangement. Then the hives would start.
Today was one of those days.
I reached for the Benadryl I now kept in my bag and opened it while driving, which is as dangerous as it sounds. I took one without any water. To stay awake—also as dangerous as it sounds—I opened the window and got a hot blast of oven air that is Virginia in August and turned up the radio. I calculated how far I was from the only hospital within three counties, which was almost always too far.
I drove toward it anyway. The nurses knew my name.
When I got home, I typed into Google “suddenly allergic to everything“
Mast Cell Activation Syndrome (MCAS) appeared at the top of the search list.
Research Mode
I spent my career as a social scientist, specifically a program evaluator and applied researcher. I had worked for the Peace Corps assessing the impact of programs and then for the Obama administration designing evaluations for girls’ education and violence prevention programs. At the time, I was Director of Institutional Research at a university — data collection, analysis, reporting to state and federal agencies, and providing leadership with evidence-based recommendations to address challenges and opportunities.
Regardless of employer, my job was to hold complexity, find the pattern, and report accurately what the evidence showed, make recommendations, and speak truth to power. I trusted process. I knew what good evidence looked like—both quantitative (numbers) and qualitative (experience) evidence.
I am used to asking research questions and not stopping at the surface level of data.
So when MCAS appeared at the top of that search, I did not close the laptop.
I opened twelve more tabs.
Rabbit Hole
What I learned over the next few hours was this:
Mast cells are part of the immune system. Their job is to protect you — to sound the alarm when something harmful enters the body and to release chemicals that trigger a response. Thousands of chemicals that act as mediators. The most well-known being histamine, cytokines, prostaglandins, leukotrienes, and heparin. In a body working as designed, that system is a defense mechanism. In MCAS, it is an assault mechanism.
When mast cells misfire they release histamine and other mediators in response to things that are not threats: a fragrance, a temperature change, stress, certain foods, friction from tight clothing, a filler ingredient in a medication, sunshine, fluctuation in estrogen, venom (bees, spiders etc.), infections, pain, exercise, something in the air on a particular afternoon that nobody else in the room registers at all.
Basically, anything.
Anyone with an allergy is familiar with anaphylaxis. Mast cells react immediately after you are exposed to the specific allergen causing anaphylaxis (an IgE reaction). But an MCAS reaction can happen cumulatively, over 3 to 72 hours (an IgG reaction), especially for Idiopathic MCAS where there isn’t a known allergen or other condition causing the mast cells to activate. In other words, your mast cells degranulate (shoot out inflammatory chemicals) for no known reason and with minimal provocation. You just went for a walk in the sunshine. And so, it seems there is no clear trigger.
What most people don’t realize is that anaphylaxis isn’t just your throat closing and blood pressure dropping. It’s any combination of hives, swelling on your face, hot itchy patches of skin, difficulty breathing or shortness of breath, nausea, vomiting, diarrhea, fainting, dizziness, confusion or— and I want you to know this is the actual clinical term — a sense of impending doom (my favorite). Any of these reactions can happen without your throat closing and it’s still anaphylaxis. The body behaves as though it is dying because some part of it genuinely believes it is.
Internal Recognition
As I read the symptom list, I recognized almost everything on it.
The reactions happening on my commute home — check. The hives and the swelling happening on the commute to work — check. The shortness of breath all the time — check. Feeling faint when standing up and in some cases, fainting—check. Severe cramps and diarrhea after eating tomatoes or avocados—check.
But then the list went into territory I hadn’t connected to the drives home: the cognitive symptoms that had been building since January—confusion, memory issues, severe brain fog—and vertigo, dizziness, extreme fatigue, random red patches on my skin, a constant runny nose, blurred vision (even with my glasses on) and a racing heart. Tinnitus—could this be the hiss in my ears? And that sense of impending doom, which I called panic attacks (clinically not the same).
I had other symptoms that didn’t fit my research, like electric-shock sensations traveling across my body, unexplained weight loss, strange tastes in my mouth, and a sudden lack of coordination—I could no long throw or catch a ball and I tripped all the time. Not the norm for a former athlete and dancer.
The MCAS diagnostic criteria require symptoms in at least two organ systems simultaneously. I was running the full inventory: skin, respiratory, gastrointestinal, cardiovascular, neurological. And then some. I kept reading.
Women with MCAS tend to have endometriosis at a young age (30 for me). They tend to be “allergic” to aspirin (since age 11). They tend to be diagnosed with irritable bowel syndrome (since age 30) and/or GERD (since age 40).
Somewhere around the third or fourth tab I stopped being a researcher and became a woman sitting very still in a quiet house, late at night understanding something she could not yet say out loud. How long has this been going on for me?
External Recognition
The diagnostic criteria for MCAS were first formalized in 2010, when a group of international specialists finally named what they were seeing. It took until 2016 to receive an official ICD-10 billing code — the code that tells the insurance system a disease exists, the code that allows a physician to document what they’re treating in a way the medical establishment will recognize. And pay for. A code that validates your experience and says it’s real, not in your head.
I got sick in 2018.
Even with the code, my research showed the average time from first symptom to MCAS diagnosis is ten years. Let me restate that TEN YEARS.
I turned that number over for a long time. Ten years. And while the disease is still considered rare, researchers now believe it affects a meaningful portion of the population. But for most of those years, the disease didn’t have a name the system could stand behind. Doctors were not taught to look for it. They still are not taught to look for it. Labs come back normal. Patients are sent home. And all the while the body keeps staging its assault, and medicine keeps calling it something else.
Anxiety. Menopause. Stress.
I had heard some version of those words already, in the months since January. I would hear them many more times before this was over.
“It’s just menopause. It’s natural, go home.”
Hypothesis
I read until late that night. By the end I had a working hypothesis, a list of questions, and the specific dread of someone who has researched her way into a corner she cannot research her way back out of.
I thought: I cannot have this. My life will be over.
I was right about one of those things.
Keep on your crooked path . . .
Suddenly Allergic to Everything is the first essay in An Illness Narrative — a memoir series about living with Mast Cell Activation Syndrome and Sarcoidosis, two rare chronic illnesses, and what I lost and rebuilt along the way. New posts in this series appear once a month. If this resonated, consider sharing it with someone who might need to know they’re not alone in this.
If this story is yours too
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