Mast Cell Activation Syndrome: The Reaction That Just Keeps Giving
In 2022, my life changed. I won state-wide awards and loved every story I wrote. After graduating, I accepted my first real job 10 hours away from home.
I couldn’t contain my excitement; I was ready for my newest chapter. There was just one thing I didn’t account for: an undiagnosed autoimmune condition.
Starting a full-time job triggered severe allergic reactions for months— reactions I’m still experiencing even now; how crazy is that?
I could feel a lump growing in my neck, and with it, a whole host of new fears. I thought, “Is this a swollen lymph node? Did my cancer come back? What’s going on?”
It’s honestly comical how my body still finds ways to surprise me.
From August until December, my days were filled with doctors, antibiotics, biopsies and CAT/PET scans.
“I really don’t know what it is. Is it really still there? I can’t feel it,” I’d hear from multiple ENTs about the mysterious lump. “Never mind I feel it. It’s not stuck in place or hard, so that’s good news.”
I haven’t felt such defeat in a long time.
On top of the lymph node, I experienced a plethora of other symptoms: constant rashes with hives, flushing of the cheeks, throat tightness, extreme fatigue, abdominal cramps, headaches, inflamed nostrils, chills and increased dizziness.
Every single condition worsened throughout my attacks. My body was a warzone I couldn’t control.
I tried to work on top of this, but it was impossible. I couldn’t breathe. How was I supposed to interview people with no oxygen?
The one skill I gained throughout my childhood was the ability to hide my problems. I could go days without people knowing something was wrong, so instinctively, that’s what I tried to do.
I wanted to do my job because it was the one thing I liked about my life. But the more I worked, the more my stamina declined. I was a shell by late September.
There was (and still is) talk about removing the lump. Personally, I think I have enough scars on my neck.
I’d get that sucker out ASAP if it was cancer, trust me. I wouldn’t wait a single second. Yet after every blood test, every biopsy, every scan, it was proven to just be a reactive lymph node.
“Maybe you just have an infection or your body just activated that lymph node randomly,” the doctors would say.
I hated the ambiguity behind every word, especially the “maybe.” I’d leave doctors frustrated with myself.
I knew deep down I didn’t have an infection, but no one offered another diagnosis. It felt like I was living in the early stages of the pandemic again— I was isolated from everything I loved.
For the first three months, the only people I saw were doctors and my mother. I stayed home because I feared for my life. No one knew how my body would react to a common cold.
I didn’t even get a flu shot because the vaccine could’ve sent me into anaphylaxis. Any choice I took could lead me closer to death. I know that’s morbid to say, but that’s exactly what I thought.
No one knew how my unknown condition would act next.
I started researching for causes on my own. It was time to take matters into my own hands and see which autoimmune diseases went with EDS. Within that one search, there were a handful, but one specific condition stuck out to me and my mother: mast cell activation syndrome.
“I’ve had my allergist tell me I have something wrong with my mast cells,” she said peering over my shoulder. “It would explain why you are so reactive to everything.”
My rashes growing up were awful. If you read my recent article, “Growing Pains,” you know exactly how they looked.
In December, I was convinced this was the missing puzzle piece to my story. The next step was to discuss this find with my primary care doctor.
“Okay, tell me everything. Explain to me what you think you have,” my doctor said. I love her—she is probably one of the first doctors I’ve had that has truly listened me.
It was comforting to be heard. I started explaining everything: my swollen lymph node, the tightness of my throat, the rashes all over my body… every single thing.
“I can definitely see this,” she’d say back with a quick nod. Right after, she prescribed me antihistamines and Singulair. “If it is this, these should help. I really hope things start slowing down for you.”
Sure enough, I could breathe again. My rashes were still there, but nothing like before. The cramps, never-ending headaches and chills slowly dissipated.
When I went back, my doctor and I found the spark that lit the match: my job. The stress of daily news caused my body to think I was in danger. Being in a stressful environment, even though I loved the work, caused my body to shut down.
“Abbey, you really need to lower your stress. Mast cell can be triggered by many things, and in this instance, it was stress,” my doctor said.
I was in shock to say the least.
How is someone with generalized anxiety disorder supposed to remain stress free?
Fast forward to March: I’m starting to feel like myself again. I’m in a place where I can finally ask myself, “Okay Abbey, what’s next?”
While I can’t do journalism full time, I’d love to continue it as a side hustle. If there’s anything I know, it’s that I’ll never give up writing. Ever.
I will say, I am ready for this new chapter of life. Whatever happens, I know I’ll make a difference. You can count on that.
Sincerely, Abbey