Living, Singing, and Surviving: An Artist’s Journey Through Chronic Illness and Medical Dismissal
Diseases
Bone / Muscle Disease, Cancer, Chronic Pain, COVID-19, Ear / Nose / Throat Disease, Endocrine Disease, Eye Disease, Gastrointestinal Disease, Immune Disease, Mental Health, Neurological Disease, Skin Disease
Issues and Challenges
Molly has encountered: Disability, Discrimination (nonmedical), Financial Assistance, Gaslighting, Invisible Illness, Job Insecurity / Loss
My Story
I'm a Southern California-based opera singer, voice teacher, photographer, and mom. I'm also behind the advocacy group and blog The Chronicled Voice—a safe space for artists with chronic illness. I have been dealing with health issues 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 be exacerbated by the new ones. My anxiety, depression, and OCD became debilitating 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.
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. 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 hungover." One week later, I saw a 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, and 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. 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 go write more in my blog... In the meantime, I'm celebrating my beautiful life and family, my successes, and my ever-surprising and evolving career, and I am committed to staying positive, creative, and will keep sharing my story in hopes that it helps others.
My Motivation and Inspiration
- I want to educate, empower, and inspire those with chronic illness so that they can advocate for themselves.
- I want to make the general population aware of chronic and invisible illness and fight the stigma surrounding it.
- I want to see a change in the way our medical providers communicate with each other and their patients so that appropriate and timely care can be provided.
- I want to fight the stigma surrounding mental health and disability that exists in our arts industry and our culture in general.
- I want artists to know that they are not alone and do not have to hide or struggle alone because they are afraid of being fired or blacklisted.
- I want more research on vocal function and suggested treatment in relation to chronic illness.
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