From Anaphylaxis to Airplane: My Journey Living with MCAS

The journey to finally boarding an airplane after years of uncertainty.

A decade of mysterious symptoms, a near-death turning point, and the slow, hard, hopeful road back to life.

In October 2025, I boarded an airplane for the first time in years. To most people, that sentence would be unremarkable. To me, it was everything. It was the culmination of a decade of unexplained suffering, a near-fatal reaction that changed the trajectory of my life, and thousands of small, painstaking steps toward reclaiming a world that had shrunk to the size of my living room.

This is my MCAS story. I'm sharing it because I know there are people out there right now who are where I was — dismissed, terrified, and getting sicker without answers. I want you to know that it is possible to get better. It is not easy. It is not fast. But it is possible.

Part One: The Years Nobody Could Explain (2014–2022)

My symptoms started in 2014 — nausea, IBS-like GI distress, anxiety that seemed to come from nowhere. I was living near MIT while my husband was in graduate school. I was also losing weight at an alarming rate, eventually dropping 40 pounds from vomiting. Doctors told me it was stress. Anxiety. They sent me home.

I want to be clear about what that felt like: to be genuinely, physically ill — so ill you cannot keep food down, so ill your body is wasting away — and to be told repeatedly that it's in your head. It is a particular kind of loneliness that is hard to describe.

I recovered somewhat over the following years, but I never felt right. Random hives became a fixture of my life. My family normalized this — several relatives had hives too, and we all chalked it up to stress. Looking back, I wonder how many of us were dealing with something that was never properly named.

To be genuinely, physically ill — and to be told repeatedly that it's in your head. It is a particular kind of loneliness that is hard to describe.

Then came COVID. I worked as a COVID nurse, and by 2022, something had shifted dramatically. The hives weren't going away anymore. They lasted two months without stopping. Something had broken loose in my immune system, and this time, it wasn't going back.

A critical piece of my puzzle came from my older sister. My mother has passed, and I don't have childhood medical records, but my sister remembered that I'd had allergy shots as a child. Allergy immunotherapy can last around 30 years — and mine were wearing off. My immune system, it turned out, had been protected by a treatment I didn't even remember having. Now that protection was gone.

I went to an allergist. Skin testing revealed I was reactive to virtually everything they tested for. We began immunotherapy, but my immune system was too reactive to tolerate standard dosing. I couldn't breathe. My world began to close in.

Part Two: The World Gets Smaller (2022–July 2023)

Over 2022 and into 2023, I tried medication after medication — ketotifen, cromolyn, Pepcid, Claritin, tranexamic acid, Xolair, rupatadine, prednisone. Some helped temporarily. None solved it. I had to give up my dog after going into anaphylaxis. I stopped being able to go places. The radius of my safe world shrank and shrank.

In July 2023, I received my fifth Xolair injection. I went into anaphylaxis so severe that

I nearly died in the doctor's office.

I want to sit with that sentence for a moment, because it's easy to read past it. I nearly died. In a medical office. After a treatment meant to help me. My immune system had become so destabilized that I had to stop going outside entirely. I sat at home by two air purifiers. I couldn't wash my hair. I couldn't use any skincare products except water. I was down to 12 safe foods.

My world had shrunk to a chair between two air purifiers. I had 12 safe foods and I was afraid to breathe.

But that crisis — as devastating as it was — turned out to be the turning point. Because in the aftermath, my allergist and I finally put the pieces together. My primary trigger wasn't pollen, or dust, or my dog. It was polysorbate 80: a common emulsifier found in medications, food, cosmetics, and cleaning products. It was everywhere. And I had been unknowingly dosing myself with it constantly.

Part Three: The Work Begins (July 2023–October 2023)

For the first three months after my near-fatal reaction, I did not leave my house except to see my allergist. We vacuumed daily. We changed the bedsheets daily. We replaced our air filters every single month. I sat between two air purifiers and I started to build a system.

I created a spreadsheet — cross-referencing oral allergy syndrome food triggers, researching the FDA's databases for products containing polysorbate 80, mapping every category of my life. Medications. Shampoos. Sauces. Supplements. It was painstaking, obsessive work. It was also the thing that saved my life.

I still had minor reactions — about once a week — but no more anaphylaxis. My medication regimen was complex (a story for another post), but the reduction in exposure was doing what no drug had fully managed to do: giving my immune system room to breathe.

Part Four: Immunotherapy, and a Dog Named Molly (October 2023–February 2024)

By October 2023, my immune system had calmed enough to try immunotherapy again — this time going far more slowly than any standard protocol. Every two weeks. Tiny dose increases. Each shot made me sick. I went anyway.

And then I found Molly.

I'd had to give up my previous dog due to my allergies, and the loss of that companionship had been its own grief. But I discovered that certain female dogs can be tolerated better by some allergy patients, and I found a trainer who had worked with seizure alert dogs — someone experienced in training from a home environment.

We got a puppy, and I trained her from my house.

By the time Molly was six months old, she could detect polysorbate 80 in my environment. She became my sentinel. From that point forward, I had zero exposures. Zero. A dog achieved what years of careful label-reading had only partially accomplished.

By the time Molly was six months old, she could detect polysorbate 80 in my environment. She became my sentinel.

Part Five: Slowly, Carefully, Reclaiming Life (February 2024–February 2025)

The following year was about incremental expansion. Finding products I could tolerate — soap, eventually shampoo, lotion. Learning to leave the house to visit the homes of people I trusted, whose environments I knew were safe. Building my own therapy practice specifically so I could control my workplace — the air quality, the cleaning products, what was allowed inside.

I used my cross-reactivity spreadsheet to slowly reintroduce foods, moving each one through a system I developed: red (not safe), yellow (being tested), green (tolerated). One food at a time. Weeks between trials. It was slow. It was necessary. It worked.

I learned my triggers well enough to prepare for them with my medications rather than simply avoiding all of life. That shift — from hiding to preparing — was profound.

Part Six: Setback, and the Long Spring (February 2025–October 2025)

In January 2025, there was a water leak in our basement. The remediation team used a spray to address the mold. It contained polysorbate 80. Within days, I was in a significant flare.

This is the part of recovery stories that often gets left out: it's not linear. After eighteen months of painstaking progress, one exposure in my own home sent me backward. I had to add a low dose of epinephrine to my immunotherapy protocol — something I still do every two weeks.

But here is what I know now that I didn't know before: I knew how to recover. I had the tools. I had Molly. I had my system. Over the spring of 2025, I clawed my way back to my maintenance dose. And then I kept going.

By summer, I was going outside for short periods. Not gardening — not yet — but outside. Breathing air. Feeling sun. By the fall, I was down to just five primary allergens. The list that had once felt infinite was becoming finite.

Part Seven: The Airplane (October 2025)

In October 2025, I got on a plane.

I prepared extensively. Molly came with me. I had my medications staged and accessible. I had researched the airline's cleaning protocols and food offerings. And I did it. I flew.

I cried. I'm not going to pretend I didn't.

I got on a plane. I prepared. I brought Molly. And I flew. I cried. I'm not going to pretend I didn't.

Where I Am Now (2026)

Today, I have two known allergens: polysorbate 80 and avocado. Two. Down from a list that once encompassed nearly everything I touched, breathed, or ate.

I still do allergy shots every two weeks. I will likely do them for at least ten years total — possibly ongoing. That used to feel like a sentence. Now it feels like maintenance. Like the oil change that keeps the car running.

I had one exposure recently. It caused a minor reaction. Not anaphylaxis. Not the ER. A minor reaction, managed at home. That is what progress looks like.

I feel generally healthy most days. That sentence — I feel generally healthy most days — I could not have written two years ago. I wrote it just now and had to stop for a second.

What I Want You to Know

If you are in the thick of this — if your world has gotten small, if doctors have dismissed you, if you are surviving on a handful of safe foods and living in fear of your own body — I want you to know a few things:

You are not imagining it. The dismissal you have experienced is real, and it is wrong, and you deserve a provider who takes you seriously.

The obsessive spreadsheet, the daily vacuuming, the slow food reintroductions — it is not excessive. It is the work. And the work is worth doing.

Recovery is not a straight line. Setbacks are not failures. They are data.

And Molly — well, if you ever get the chance to train a dog who can detect your allergen, do it. It changed everything.

I plan to share more about my medication protocol, my food reintroduction system, and Molly's training in future posts. If you have questions or want to share your own story, I'd love to hear from you.

— Written in 2026

Rachel Ward, PMHNP-BC is the founder of Something Human Mental Health. She believes strongly in removing barriers to access to mental health and creating a holistic person centered and welcoming place for people to receive care.