a very condensed history of my experience with chronic illness and invisible disease
Since I started The Chronicled Voice I have had the pleasure of being invited to team up with advocates and non-profits around the world to help educate, empower, and research. It is clear that one of the best ways we can work toward change is to just keep telling our stories. This version of my story will be published by one of those organizations soon. It is an overview that focuses in a bit more on the unfortunate and infuriating patterns we see all the time in our health care system.
Photo: Anastasia Sistevaris
my chronic illness back story
I have been dealing with health issues for my whole life. I started showing signs of anxiety and OCD when I was 4, my dad became chronically ill when I was 6, and after getting mono at 14 chronic illness and mental health became a very regular part of my life. As time went on new issues would arise and pre-existing ones would get worse or exacerbated by the new ones. My anxiety, depression, and OCD became debilitaing at times, I watched my dad's illness progress into cancer, new physical symptoms started creeping in and would eventually become full blown diagnosable diseases. Life, of course, did not pause for any of this. I had a child while I was still an undergrad, 3 weeks later my dad passed away, I learned to navigate and fight through all of the physical and emotional stress and went on to grad school. This is where the frustrating, never-ending, often gaslit journey into the (let's face it) HELL that is our medical system really started.
In 2014 I went to the hospital 4 times for symptoms that resembled a stroke and/or heart attack or MS or....??? I had a number of symptoms including, blurred vision, neuropathy, brain fog, achy joints, full body pain, numbness on one side of my body, chest pain, shortness of breath, I was passing out, and just out of it. Every time the doctors were baffled. The first 3 times they gave me no answer. "Follow up with your primary." The 4th time they thought it was a complex migraine...maybe. "Follow up with your primary." My doctor would tell me to exercise, lower my stress, eat well, etc. (For what it's worth, at this point in my life I was in the best shape of my life.)
The practice of practicing medicine with zero investigative instinct was becoming a trend.
fast forward 2 years
In 2016 I was watching my husband sing in an opera. I started feeling very ill and got up to get some air and passed out in the aisle. I hit my head so hard that I broke the arm of the innocent chair that broke my fall (sorry Detroit Opera). When I told the ER doctor I was pretty sure I had a concussion they looked me up and down, obviously taking in my glammed up hair, makeup, and gown, and asked if I had anything to drink that night. I said I had one glass with dinner 2 hours before I passed out. I assured them I was not intoxicated. They dismissively jotted down a note on their clipboard and said, "You don't have a concussion. You're hung over." One week later I saw neurologist and was diagnosed with a severe concussion.
The next few years would bring a continuation of the same pattern from doctors. I would be passed from specialist to specialist, there would be gaslighting, little interest or concern, no one would look at my history or compare notes, no one really listened. During this time I had 2 miscarriages, long Covid, a successful pregnancy (although I was very sick with cholestasis at the end), my esophagus mysteriously stopped functioning normally, I had surgery to repair a hernia (it did not fix the esophagus issue) and finally, FINALLY, this past year started getting some diagnoses. By this time I had done enough research that I knew which tests to ask my doctors for and how to advocate for myself in these appointments. I want to make it clear that I had to essentially diagnose myself and had to FIGHT for any answers that I have received. I knew that I had to repeat myself multiple times. I knew that I had to show them timelines and charts in writing. I knew that I had to use clinical terminology for some to take me seriously. I knew I had to say that these symptoms were bad enough that they were affecting my career. About 4 years ago my daughter (now 15) had also started to develop symptoms that almost completely mirrored mine so this made me an even fiercer advocate.
Today
We know that both my daughter and I have Hashimoto's disease, fibromyalgia, anxiety, depression, OCD, dysautonomia and we are still trying to figure out the cause of some of the other symptoms and abnormal blood work. We also recently found a nodule on my thyroid that was not benign and will receive further testing.
I could go on to write about issues we have faced with the school system, the unemployment department, other medical issues, additional ER visits and extreme incompetence or (at best) laziness across the board that has delayed treatment for my daughter and myself. I could write a book about how all of this has affected her well being. Another book about how it all has affected my career and my voice. I could talk for hours about the opera industry and the stigma that still exists surrounding mental health, illness, or anything that suggests you are not "perfect." Perhaps I'll write more in a future post... In the meantime I'm celebrating my beautiful life and family, my successes and my ever-surprising and evolving career, and am committed to staying positive, creative, and will keep sharing my story in hopes that it helps others.
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