Ep. 406 Living with Life-Limiting Illness with Novelette Munroe

Learn about the challenges of coping with loss, grief and uncertainty that accompany a life-limiting illness.

My guest Novelette Munroe is a poet, artist and hospice volunteer who was born with a rare and life-limiting genetic skin condition called Epidermolysis Bullosa (EB.) Despite dealing with ongoing and constant medical issues Novelette manages to volunteer her time in hospice and peer bereavement in her local community. She discusses the challenges of her life journey and how she has managed to cope with multiple losses caused by her illness and the deaths of several friends who also had EB. Learn more about Camp Discovery for kids with skin diseases:

www.aad.org/public/public-health/camp-discovery

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This episode includes:

• What life has been like dealing with EB
• The importance of connecting with others who are experiencing a similar illness and how summer camp changed everything for Novelette
• Why Novelette decided to become a hospice volunteer
• How Novelette developed “grief literacy” with the help of teachers
• Practices that have helped her cope with ongoing illness, uncertainty and grief
• The benefits of mindful self-compassion for grief and illness
• What Novelette wishes medical professionals understood about helping patients with life-limiting illness

Links mentioned in this episode:

• Register for Seriously Let’s Talk
• VIDEO: Kaley Cuoco and Courteney Cox discuss their fundraising support for EB research
• Book: Mindfulness and Grief by Heather Stang
• Get EOLU Podcast Merch here
• Conversations on Death with ChatGPT – Audiobook here; Print Book here
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