Celebrating 5 years since my MCAS diagnosis

Five years ago, on December 22, I was diagnosed with mast cell activation syndrome. 

As I entered the university’s cancer clinic, greeted by Christmas decorations and a volunteer dressed as an elf, I braced for a possible death sentence. For better or worse, my pain and exhaustion numbed my fear. I had spent the entire year unsuccessfully pleading with doctors to help me as I lost my ability to eat, move, think, and sleep. All I knew for sure was my lab work was positive and something was wrong with my mast cells.

Of course, I had never heard of a mast cell and I had to wait for an appointment. One lab test noted, “Systemic mast cell disease is a heterogeneous disorder.” So I googled “systemic mast cell disease.” After reading Mayo Clinic’s page several times, I surmised I had two diagnostic possibilities: systemic mastocytosis or mast cell leukemia. The median survival rate of mast cell leukemia after diagnosis was 6 months. I joined Facebook groups for mastocytosis, where some people briefly mentioned “a newer condition called MCAS,” but nobody could tell me if I was going to die.

Spoiler alert: I’m not dead yet.

While I felt like the most tragic soul on the planet sitting in that cancer clinic waiting room and glaring at the cheerful elf, I know now my diagnosis was arguably a Christmas miracle. I had walked a mere 5 blocks across campus and paid a $35 copay with no awareness that I was seeing a world-leading specialist. I had no idea my diagnosis would explain a lifetime of health challenges literally starting from birth (e.g. anemia, food intolerances, interstitial cystitis).

Thankfully, I also had no idea the ridiculous amounts of science and policy I would need to learn to stay alive. On the five-year anniversary of my MCAS diagnosis, I would like a damn degree.

To my fellow MCAS badasses, I want to say MCAS gets easier. To everyone else, I want you to know every day is a painful nightmare. It is really a combination of both. You collect tools and learn how to adapt.

How I describe the past five years:

• Year 1: Total destruction and despair
• Year 2: Renovating my life
• Year 3: Building a support system
• Year 4: Survival and self-advocacy
• Year 5: Dreaming again

For me, 2015 was much harder than 2020. Although MCAS wasn’t a death sentence, it did feel like torture. Every day was painful and treacherous. It felt like no one was willing or able to help me. Isolating wasn’t enough. While I know how lucky I was for receiving a diagnosis, I am certain an earlier diagnosis could have prevented the worst year of my life. This is why I get so upset that affordable MCAS testing and evaluation is no longer available at the university, let alone in Minnesota. At least, there’s a lot more information and support online today.

Today, I celebrate my diagnosis and the healing it has provided through treatments and accommodations. Tomorrow, I continue fighting for access to MCAS testing and treatment.