Patient-Led Discussion on Living with Serious Illness
Our podcast is hosted on Spotify and Anchor.
Mettle Health counselor Ladybird Morgan, RN and MSW, Dani Chammas, MD, and two Mettle community members talk about what it is to live with a serious illness.
Patient-centered care means talking to, and learning from, people living with serious or chronic illness. How do they view their experience, what do they want more of from the medical team, what lessons have they learned and what can we learn from them?
We discuss:
0:00 Introductions
3:52 What stands out at the most challenging thing to grapple with when it comes to dealing with serious illness?
-Getting your hands around the chaos of a medical diagnosis
-What is the fear about?
-Living in crisis mode
-Challenges change and evolve
-Navigating other people’s responses
-Feeling overwhelmed with communication
10:05 Finding your own voice during the experience of illness when others have different ideas of what you should o
-Evolution from ego to soul
-Turning your body over to medicine, and hanging onto the soul
-You get your identity back, but you’re not the same person
13:50 How can people meet you where you are?
-Disappointment when people walk out of your life
-Disagreements over treatment
-Not everyone is on teh same page at the same time
-Importance of authenticity
16:29 People want to be supportive to their friends and family who are sick, but can still say the wrong thing - how to show up for people?
-Dynamic exchange between two people
-Patients also tend to caregivers
19:20 How does loneliness show up when dealing with serious illness?
-Still living joyful lives when we can
-Feeling both alone, but also recognizing the existing support
-Falling in love with everything in the world, but knowing it won’t last and not being able to share that feeling
-Slowing down and feeling multiple emotions
-Holding both living, and accepting death
32:20 What would you tell your past self from 10 years ago?
-Be kind to yourself
-It’s death that gives life
-Loosen the screws
-Everything changes, observe it and pay attention
-What’s crowded out gets filled back up with love
39:00 It’s not about getting this “right”, to be the best caregiver, to be the best patient - there is cultivation
46:03 Thinking about ego and soul: ego runs away, soul stands it’s ground - not getting so steeped in misery that you miss what illness has to offer
50:19 When you received your diagnosis, how did you decide who to tell and when to tell and how did you bring it up?
59:55 Rumi poem
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