The thing about Mast Cell Activation Syndrome (MCAS, a little-known chronic illness that affects the entire body), is that while it is believed to lie dormant in approximately 14-17% of the population, it typically requires a “trigger”, or major life event/physical trauma to “kick it into gear” and get those mast cells overreacting. For some people, this trigger might be a difficult pregnancy, a severe car accident, or a major surgery. For myself, it was a rather nasty bike crash in May of 2021 that triggered daily migraines, benign lump growth, approximately three months of daily suicidal thoughts, and other various maladies.
If my mother had not already been diagnosed with MCAS (after a major surgery and a decade of searching for answers and a diagnosis), I’m sure there would have been no way for us to link my bike crash with the intense mental illness I was experiencing. I might have gone on to treat my condition as symptoms of Post-Traumatic Stress Disorder (PTSD), perhaps adding new antidepressants or other meds, but I would not have recognized my issues as stemming from overactive mast cells.
Since that fateful May, my life has been spent in and out of hospital waiting rooms, waiting for results, emailing doctors and calling nurses, and paying medical bills. I’ve never hit my insurance deductibles so early in the year. From the time I first started suspecting that my struggles might be the result of MCAS, I’ve had approximately twenty vials of blood drawn, three rounds of testing ordered, two biopsies, and six expensive hours of talking with an MCAS specialist. I’ve dropped a couple thousand dollars (of my parents’ money) to visit said specialist in New York and pursue a diagnosis. After my first three-hour appointment, I was told that I “reek” of MCAS, and that once an official (laboratory evidence-based) diagnosis was achieved, there were many options for treatment, including a “perfect cocktail” of antihistamines and other MCAS-specific medications.
I remember being relieved. Chronic depression, nausea, and fatigue continued to plague me on a daily basis, but at least there was a plan in place. Every two weeks, I could try a different medication until I found the one that worked the best for me. It took months–years and even decades less than the vast majority of MCAS-havers–but eventually I was officially diagnosed with MCAS, though that was just the beginning of my health journey.
About halfway through my final semester of college and almost a full year after my bike crash, I had a severe flare-up of another chronic illness I didn’t know I had. The statistic representing American adults with one chronic illness (60%) is not that much higher than the statistic representing American adults with two or more chronic illnesses (40%). For five days, I was unable to get out of bed. I felt weirdly high, constantly on the verge of passing out, and utterly exhausted. My heart beat alarmingly fast at rest, and when my blood pressure dropped to 88 over 56, I decided to go to the emergency room. One panic attack and three normal lab results later, I was released at one in the morning.
None of the doctors I saw that week were able to give me any idea what might be wrong with me. It was only after consulting with my cousin who has, among other things, lupus, clustered migraines, Ehlers-Danlos syndrome, MCAS, and Postural Orthostatic Tachycardia Syndrome (POTS) that I was able to find some answers. It was POTS. Known anticlimactically as the standing-up-too-fast disease, I was surprised at the psychological element of distress I was experiencing during the flare. I was assured by my cousin and other POTS patients that this was typical. And so, I bought a pair of $70 compression leggings, found a way to work two tablespoons of salt into my daily diet, and started taking supplemental electrolyte pills. Standard POTS treatment. I ended my bed-bound spring break and prepared to finish senior year in whatever state of health I could manage.
Since then, I successfully graduated college and found a job where I can work from home (and often, from bed). I continue to break my monthly budget with the number of doctor’s appointments I attend per month, and even though I’ve found my “perfect cocktail” of antihistamines, I’m still adjusting my medication to counteract my anxiety, depression, and OCD. Some days, the feeling of being trapped in a body that hates me is so overwhelming that I come to hate my body in turn. But I try to remember that the things I often hate about my body are the things that make me slow down, appreciate the little things in life, and connect with you wonderful people. And for that I am endlessly grateful. <3 #PosturalOrthostaticTachycardiaSyndrome
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