Gwen Mayes

Hypertrohpic Cardiomyopathy (or HCM) has had a profound impact on my life. It's the number one inherited cardiac disorder and having had symptoms at birth, it has required management, lifestyle changes, medications, and surgeries the past several decades. The main challenge has been fatigue, shortness of breath doing simple exercises, anxiety and palpitations that require me to wear an implantable cardiac monitor 24/7. I've seen 20 cardiologists at seven different medical centers.

When I was diagnosed at 32, HCM was considered a terminal condition.  I was told I would have a shortened life expectancy, pregnancy would be risky, I would need medication and interventions for life. The emotional toll was tremendous; there was no internet or "Google" search to learn more and the uncertainty and nervousness settled in at an early age. Relationships were nearly impossible as a young woman; I never married and found it difficult to share my condition with others. Since HCM is invisible, it has always been difficult for others to take my side effects — fatigue, shortness of breath, chest pain, brain fog, dizziness — seriously.

I've been fortunate to have good medical care and have lived a relatively normal life. During COVID, my isolation was exceptionally difficult as I live alone and do not have immediate family nearby. The stress caused a rough several years with persistent atrial fibrillation for nearly two years that left me fatigued, unable to handle my client business, and short of breath if I tried to sweep my porch.

Fortunately, my condition has stabilized in the past year. I've been able to resume yoga, pilates and walk several miles moderately for exercise. I have a therapist who specializes in working with people living with a chronic illness and our time together weekly has been extraordinarily helpul.  My mantra "don't shrink" stays with me regardless of what I face.

I advocate to eliminate the fear and misunderstanding others have about how to live a full, rewarding and amazing life while adjusting to the limitations and challenges of a chronic illness.

I advocate so others know first hand the impact of their decisions — regulations, policies, laws, viewpoints — on those of us whom are affected the most.

I advocate because our healthcare system in the U.S. is complicated and what I learned as a physician assistant and lawyer working in health policy will help others navigate the system better.  

I advocate because I want to help others find ways to remain emotionally grounded and live a purposeful life while living with a chronic condition.