#95 From Medical Mystery to Self-Advocacy: Living with Ehlers-Danlos Syndrome and CCI

What happens when you know something is wrong with your body, but the medical system can't explain why? After a successful 25-year career that took her from bank teller to leadership roles at JPMorgan Chase and IBM, entrepreneur and author Monica DuBeau faced an entirely different challenge: solving the mystery of her own declining health.

In this episode Monica discusses her long and often frustrating diagnostic journey, which ultimately led to diagnoses of hypermobile Ehlers-Danlos syndrome (hEDS) and craniocervical instability (CCI). Monica shares how she navigated medical dismissal, used her analytical background to connect the dots, and made the difficult decision to undergo complex neurosurgery.

Now recovering from surgery, Monica is turning her experience into advocacy. Through her memoir, You Might Be a Zebra, and a patient resource guide, she hopes to help others navigating rare, misunderstood, and often invisible conditions feel less alone. Her story highlights the importance of self-advocacy, perseverance, and being heard when the answers are far from straightforward.

Episode Discussion Topics

• Monica's journey from bank teller to corporate leadership and co-founding an AI compliance company.
• The first signs of her mysterious illness and how her symptoms disrupted her career and everyday life.
• The emotional toll of medical dismissal and searching for answers without a clear diagnosis.
• How Monica applied her professional problem-solving skills to investigate her own health.
• Understanding craniocervical instability (CCI), its symptoms, and its potential impact on the nervous system.
• The connection between hypermobile Ehlers-Danlos syndrome (hEDS), connective tissue abnormalities, and CCI.
• The difficult decision to pursue specialized neurosurgery and how Monica evaluated the risks and potential benefits.
• The realities of recovery following major surgery and living with an often invisible condition.
• Why Monica wrote her memoir and created resources for patients navigating complex diagnoses.
• Advice for patients advocating for themselves and ways caregivers, loved ones, and healthcare professionals can offer meaningful support.

Monica's story is a reminder that patients deserve to be heard, even when their symptoms don't fit neatly into a diagnosis. By sharing her experience, she hopes to empower others to keep asking questions, seek appropriate care, and remember they are not alone in their search for answers.

Resources 

• Monica's Website
• Monica on LinkedIn 

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