I never imagined I could become

disabled

before the age of 31.

In the summer of 2021, exactly one year before I began grad school for Occupational Therapy at Columbia, I began experiencing some strange symptoms. From my intense research on the immune system in my undergrad studies, I began to piece together a bigger picture—stemming back even farther than I had originally considered—and see that there really was something bigger going on beneath the surface.

As an Occupational Therapist, I assess how people function in their roles and contexts. When I compare my functionality now to my experience from April 2022, when I first begin using a cane, there is no question about impairment in function. I’ve gotten worse. Much, much worse.

Click the “ + “ to the right of each year below to expand on the journey to my diagnosis.

  • I was diagnosed with hypothyroidism.

  • I was diagnosed with Raynaud’s Syndrome. I began experiencing body temperature regulation issues, and when I saw an opthalmologist that year, she commented that my right eye was not opening as much as the left. I thought nothing of this at the time because all that mattered was my need for computer glasses.

  • I was an avid runner for about 4 years at this point, running about 3 miles a day, 3-5 times per week. At the end of the summer, I started to notice I was breaking out in extremely itchy, hive-like welts after each run (ended up being told it was “just pruritus”—a.k.a. normal itchy skin). I also noticed increased light sensitivity (photosensitivity), and a “never-ending runny nose” as well. By the end of November 2021, chronic joint pain and fatigue had set in, which quickly evolved into muscle pain and weakness by the end of December.

  • After being dismissed by 3 doctors, I thought I had found the right doctor who was on my side. She diagnosed me with undifferentiated connective tissue disease and chronic fatigue syndrome in May 2022. We continued testing through August and did a lip biopsy which resulted in a weak positive for Sjogren’s Syndrome. By Fall my symptoms were still worsening, with muscle pain, muscle weakness, and fatigue increasing, and the addition of chronic migraines lasting 3, 4, and sometimes 5 days. My rheumatologist diagnosed me with fibromyalgia in November 2022.

  • Here we are. In mid-to-late March my symptoms progressed rapidly, I began noticing strained breathing with exertion, noticing increased blurry vision/difficulty focusing on occasion and ptosis with fatigue in my right eye, increased frequency in loss of balance, sudden weakness, and pain in the right masseter muscle, and tremors in hands and thighs mostly after exertion. After seeing a neurologist and having more blood tests and an EMG/NCS study done and still all results normal, I felt discouraged and decided to take a break from any more testing. The symptoms could be mostly explained by ME/CFS and/or Sjogren’s, and the added anxiety and mental exhaustion of testing and the return of normal results were becoming overwhelming. I decided to have a full genome sequencing done in July (still awaiting results).