I've been marveling at the strength of Suzy, a remarkable polymyositis patient, who held her ground at work for 15 years even while battling progressive muscle loss, fatigue, and overwhelming stress. It wasn't until she finally opened up about her chronic illness and embraced support from her workplace that a profound transformation began to take place. We discuss our shared journey of navigating the often murky waters of chronic illness, focusing on the importance of sharing our experiences, finding support, and understanding our nervous system's role in chronic illness.

I recall my own experience of exploring the disability process and realizing the profound necessity of advocating for oneself when seeking medical treatment. The tricky part was learning to accept help from friends and family, and to openly communicate about my needs. I found comfort in small gestures of understanding and support, like when my mother baked me a gluten-free pumpkin pie for Thanksgiving. 

The journey through chronic illness is often fraught with unfamiliar challenges and adjustments. Yet, as I found in my journey with polymyositis, there is a silver lining to be discovered. Seeking innovative solutions to manage symptoms, researching the best options, and connecting with a community of people experiencing similar struggles can be incredibly empowering. I was particularly inspired by my friend Angelique Ingram's recovery story, which ultimately led me to start speaking about my own experience of living with a chronic illness. Join me as I share these insights, aiming to inspire and encourage you in your unique journey.

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Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

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