One year ago, I fell down the rabbit hole that is chronic illness. Well, literally, I fell down the stairs. I had been ignoring the pain and weakness in my legs for a couple weeks, attributing it to too much yoga. The embarrassment of falling finally prompted me to acknowledge “this isn’t normal”. I scheduled a primary care appointment, assuming I was vitamin deficient in some area. [Insert laughter followed by sigh of resignation here.]
For the next twelve months, I was ambushed by new, debilitating symptoms each week. Sensations I couldn’t previously fathom. I am still haunted by memories of March, when I temporarily lost my ability to walk, and consequently, my ability to care for myself. I was 28 and otherwise, at the height of my independence. I acquired eight specialists and drained my savings account riding the appointment merry-go-round. Although my doctors documented my suffering, they were reluctant to provide any treatment, since my symptoms didn’t align with any disease in their specialties. Some of my symptoms were described in my chart as “subjective”.
The day after the Labor Day, I received an unprompted phone call from one of my doctors. He had used the extra time from the three-day weekend to review my chart, and among other suggestions, he recommended I make an appointment with a mast cell specialist. I scheduled the appointment, but suppressed my hopes, especially since I would have to wait months to be seen.
On December 22, I was formally diagnosed with mast cell activation syndrome. In order to meet the criteria for MCAS, you need two abnormal lab results. I had five. (I have always been an overachiever.) I was overcome by a wave of validation. Countless extraordinary experiences dismissed by other doctors now had scientific explanations. My diagnosis has allowed me to shift my precious energy from pleading for help to healing myself.
I have spent the last few months not only fighting the disease, but also recovering from the damage of my journey. I lacked adequate medical care for too long, exhausting all my resources in the process. Until now, I subconsciously stifled all reflection, because I didn’t want undermine my fight for survival.
That’s my long story short. Thank you for reading my first post! What is your long story short? More entertaining posts to come.
Great start!
Thanks for doing this blog to help us all understand your journey with this unusual and awful disease.
The relief we feel at a diagnosis. Mine took 14 years and came, last summer. I call my mast cell overachievers, as well.