How to Advocate for Your Health With Providers

By Sarah Kirwan

I live with multiple sclerosis (MS), a chronic progressive neurological and autoimmune disease, and superior semicircular canal dehiscence (SSCD), a rare inner ear and vestibular disease affecting 1 to 2 percent of the world’s population. 

MS and SSCD share symptoms such as chronic fatigue and balance issues. They also share lesser-known symptoms, like acquired nystagmus or uncontrollable rapid eye movements and migraine with aura, which causes temporary blindness. 

It took nearly a decade, but Sarah kept pushing to get an accurate diagnosis for her autophony, or hearing the sounds of her internal organs.

I was experiencing all of these. I was also experiencing other identifiable MS symptoms, like numbness and tingling, Lhermitte’s sign (an electric shock from the base of my skull to the tips of my toes), muscle spasms, and the loss of feeling in my fingertips. 

The one symptom I was experiencing that could only be connected back to SSCD was autophony, or hearing the sounds of my internal organs amplified to such a high volume they drowned out the noises of the world I knew around me. While my MS diagnosis took about eight months, my SSCD went undiagnosed and misdiagnosed as schizophrenia and bipolar disorder for almost a decade. 

We each have two windows or holes in our semicircular ear canals, which allow sound and air to flow in and out naturally. Unfortunately, I have three windows. Some call it a superpower. Most days, I call it anxiety-induced debilitation. 

I was officially diagnosed with SSCD in July 2019, and less than three months later, I underwent surgery. My brain and ENT surgeons conducted a 90-minute skull base, keyhole middle-fossa craniotomy, and capping the dehiscence or hole. 

Essentially, they drilled into the side of my head, lifted my brain off the floor of my skull, and plugged the hole with a mix of bone and bone wax. This surgery alleviated 70 percent of the symptoms I was experiencing and ended an almost decade-long nightmare. 

The digital healthcare app Livi surveyed over 2,000 women ages 18 and over in the U.K. in 2022, and found that 57 percent felt they were medically misdiagnosed by doctors, increasing to 67 percent for women ages 35 to 44.

Their survey also shows that 23 percent of women report waiting anywhere between one and 11 years for the correct diagnosis. In fact, Livi reports, “A 2019 study of 7 million people discovered that women were diagnosed later than men in more than 700 different health conditions.”

Not only does this result in lengthy waits to have life-altering or life-threatening conditions diagnosed, but it also, for obvious reasons, negatively impacts health outcomes. 

It's been 14 years since I experienced my first symptom. In that time, I’ve earned a master’s of science degree, worked in Congress on healthcare reform legislation, been an executive administrator at a world-renowned physical rehabilitation hospital in Los Angeles, left the workforce due to my rapidly declining health, started my own business, and navigated more hurdles than the protagonist in a country song. 

The experience of living with a chronic condition spurred Sarah to become an ardent advocate for disability advocacy.

Here’s What I Learned

Create a medical journal and timeline. I’d always been a writer—of letters, business reports, and creatively. In 2010, however, I unexpectedly became a “medical” writer.

As a researcher by nature, I was motivated to track my physical and mental health data. I wanted that data to show, not tell, my providers what I was experiencing in my body. And so, I tracked it all: hours of sleep and sleep patterns; drinks, snacks, and meals; alcohol intake; time alone as well as time with friends or family; exercise and exercise patterns; intimacy; and symptoms.

I also created a medical timeline, starting with the day I experienced my first symptom 14 years ago until today. Tracking this information is incredibly helpful for those of us with chronic conditions or rare diseases because we’re constantly being asked to provide a history of our disease(s) for new and existing providers. 

Use the resources available to you. We’ve all heard horror stories about patients who walk into provider offices with WebMD articles only to be rebutted and gaslit. And yet, conducting our own research is one of the few ways we can empower ourselves in the face of a debilitating unknown such as a health issue.

If you’re experiencing specific symptoms (mine were dizziness, vertigo, and autophony), use the internet to your advantage. The knowledge and information you find there can give you tools for steering the direction of the diagnosis process. So, give yourself permission to take what you’ve learned into your next medical provider appointment. 

Sarah and Carl met through a multiple sclerosis self-help group.

Trust your body, your words, and yourself. Scheduling appointments with medical providers is difficult these days. We often wait nine to 12 months for an appointment with a primary care provider and up to 18 months for an appointment with a specialty provider. And when the appointment finally arrives, it lasts approximately 15 to 30 minutes. Because of this, it’s important to show up prepared.

I’ve learned the hard way that being combative or aggressive with a medical provider doesn’t produce the intended results. I’ve also learned that it’s hard to keep this top of mind when you find yourself in pure survival mode, as I did for almost a decade.

Make the most of your time with your provider by:

• Prioritizing the items you’d like to discuss (e.g., new symptoms, medication issues, etc.).

• Sharing what you want to leave the appointment with (e.g., a new prescription, preauthorization for lab tests, etc.).

If this approach doesn’t yield patient-provider collaboration, I encourage you to get a second opinion or a new provider.

Living with MS and SSCD has taught me the importance of resilience, advocacy, and self-awareness. Years of misdiagnosis have shown me the power of documenting my health, conducting my own research, and trusting my instincts.

These experiences highlight the need for patients, especially women, to advocate for accurate diagnoses. By sharing my story, I hope to inspire others to seek the care they deserve and empower themselves in their health journey.

Sarah Kirwan lives in Arizona with her family. She is the founder and CEO of Eye Level Communications. Read more about her hearing care journey.

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