A few weeks ago, I posted a photo on social media of my latest glamorous look: a beet-red, swollen face complete with hives on my lips. Very chic. Very autoimmune. Zero stars. Do not recommend.
I was lamenting the strange collection of symptoms that seem to accompany what I’ve always assumed were autoimmune flares. My face turns bright red and swells. I suddenly develop what feels like an instant, full-blown cold—stuffy nose, sore throat, and cough—that lasts for two or three hours and then disappears almost as quickly as it arrived. I get lightheaded, sometimes to the point of feeling faint, and my stomach often decides it would also like to participate in the festivities.
These symptoms have been happening for well over a year, but lately, they seem to be getting more intense. Apparently, my body believes subtlety is overrated.
After I posted about it, several fellow patient advocates reached out with the same question:
“Have you ever been tested for Mast Cell Activation Syndrome?”
I had heard of MCAS, but I didn’t really know much about it. Naturally, I did what any reasonable person with multiple chronic illnesses and access to the internet would do: I Googled it.
And then stared at the screen.
There they were. Symptom after symptom after symptom—the same things I had been complaining about for more than a year.
I was stunned by the possibility that this bizarre collection of symptoms that had been dogging me for so long might not actually be part of my autoimmune/autoinflammatory arthritis after all.
According to the Cleaveland Clinic: “Mast cell activation syndrome (MCAS) is a rare condition caused by overactive mast cells. It leads to repeated episodes of severe symptoms that can affect multiple parts of your body. These episodes may include swelling, hives, trouble breathing, diarrhea and vomiting. In severe cases, MCAS can cause life-threatening anaphylaxis.”
As I read through the symptoms, I had two competing thoughts: This could explain so much and Seriously? Another possible diagnosis? Because apparently my medical chart was feeling a little thin and needed another plot twist.
The next challenge was finding someone who could help me figure out whether MCAS was actually a possibility.
I currently live in a small town where specialists are often part-time, splitting their schedules between offices in cities an hour or more apart. Getting a timely appointment can sometimes feel like trying to score concert tickets.
So I was genuinely thrilled when I managed to get an appointment within three weeks.
As someone who has lived with chronic illness since I was a teenager, I went into the appointment with fairly modest expectations. I’m accustomed to having symptoms minimized, attributed to something I already have, or investigated with test after test that ultimately reveals absolutely nothing.
So I came prepared.
I had my “story” written down because when you have multiple chronic illnesses, explaining your medical history without notes can quickly turn into a TED Talk nobody asked for.
I walked the doctor through the past year: the facial flushing and swelling, hives, the sudden cold-like episodes with a stuffy nose, sore throat and cough, stomach issues, lightheadedness, and episodes of feeling like I might faint. I explained how these symptoms sometimes appear individually and sometimes arrive together like an unwanted reunion tour.
More importantly, I explained how much they have affected my life.
I walked the doctor through the past year, explaining not just what had been happening, but how unpredictable these episodes had become and how much they were interfering with my life. What once felt like a collection of random symptoms was beginning to feel like a pattern—and one I desperately wanted someone to help me understand.
The lightheadedness and near-fainting episodes, in particular, have made ordinary things like running errands or meeting friends and family difficult. I’ve been out when an episode starts and have had to retreat to my car, sit there, and wait for my body to decide we are no longer in imminent danger from losing conciousness.
After I finished my concise-but-detailed explanation, the doctor looked at me and asked:
“Have you ever heard of Mast Cell Activation Syndrome?”
Well.
Funny you should mention that.
I admitted that MCAS was actually the reason I had made the appointment.
To be clear, he is not saying I definitely have MCAS. Diagnosing it isn’t simple, and there are other conditions that can cause similar symptoms. For now, though, we are treating the symptoms with antihistamines, and I’m keeping “emergency” Benadryl on hand.
The trickier part is testing.
I need to have bloodwork drawn within two to four hours of the onset of a flare.
Naturally, my body recently decided that 3:00 a.m. was the perfect time to demonstrate its talents.
The lab, shockingly, disagreed by being closed.
So now I find myself in the ridiculous position of hoping my next flare occurs during normal business hours.
Preferably Monday through Friday.
Maybe around 10:00 a.m.
I’m flexible.
Am I happy that I may have another chronic condition to add to my already impressive collection?
Absolutely not.
Am I happy that there may finally be an explanation for symptoms that have disrupted my life for more than a year?
Yes.
And also no.
Because answers in the chronic illness world are complicated. An answer can be validating while simultaneously being something you desperately wish weren’t true.
I don’t love adding more medication to my daily routine. I don’t love trying to figure out what might be triggering histamine release or wondering when another episode will hit.
But I do love the possibility that understanding what is happening might give me a better chance of controlling it.
So I’ll keep asking questions.
I’ll keep showing up at appointments with my notes.
I’ll keep advocating for myself.
And apparently, I’ll keep waiting for my body to schedule its next meltdown during convenient laboratory hours.
I’m not exactly optimistic.
I’m not exactly pessimistic either.
I think the best description is bitterly hopeful.
And after all these years of chronic illness, I’ve learned that sometimes hope doesn’t have to be shiny and inspirational.
Sometimes it can be tired, sarcastic, slightly annoyed—and still be hope.
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