Living with an Invisible Illness

Invisible diseases come with challenges that often also go unseen. How should patients navigate a disease that the rest of the world doesn't even know is there?

For Alyce, living with PNH once meant spending up to 20 hours a day on the couch because of overwhelming fatigue. Then she found a path forward, started treatment, and had a new outlook on life.

In this episode of This Is PNH, Alyce, who has lived with PNH for 14 years, and Dr. Al Freedman, a psychologist specializing in rare disease, explore the realities of living with an illness that others can't see.

Alyce opens up about the anger, isolation, and shame she experienced after diagnosis, and the turning point that helped her move forward. She shares how she learned to give herself grace and that having a "good day" with PNH doesn't mean the disease is out of the picture. She explains how she made peace with her diagnosis and why making peace doesn't mean accepting symptoms that are running your life. If fatigue or other symptoms are affecting your day-to-day life, that's worth raising with your care team.

Dr. Freedman offers perspective on the emotional and social challenges of invisible illness, from knowing when to seek support to finding the confidence to speak up for yourself. Together, they explore what it means to accept your diagnosis while still advocating for the care, support, and life you want.

For more information, visit thisispnh.com

Transparency Statement: The This is PNH Podcast is produced by Believe Limited and made possible by Biogen.

The following Biogen-supported program is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any medical decisions.

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