26 patient advocates from the Healthe Voices 2022 conference describe the moment when they realized health was fragile. Snapshots of diverse lived experiences.
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Episode Notes
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Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here
Contents with Time-Stamped Headings
to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)
Proem.. 2
Podcast intro 01:46. 2
Estella Mata 02:23. 2
Sharnae ‘Nae” Smith 02:42. 3
Jim Snedden 03:28. 3
Christine Von Raesfeld 03:48. 3
Hetlena Johnson 04:42. 3
Jason Crum 05:22. 4
Jason Jepson 05:57. 4
Brooke Abbott 06:26. 4
Phyllisa DeRoze 07:28. 4
Bethany Yeiser 07:49. 4
Ken Taylor 08:20. 5
Cindy Chmielewski 09:35. 5
Jesus Guillen 10:35. 5
Christopher Quimbar 12:31. 6
Stephanie Chuang 13:06. 6
Michelle Nadine Baker 6
Jenna Green. 6
Kara Beck. 6
Jasmin Pierre. 7
Sue Rericha. 7
Alexis Newman. 7
Ryan Williams 7
Sam Seavey. 7
Andrew Shore. 8
Howard Chang. 8
Reflection. 8
Podcast outro. 8
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Credits
Intro and outro music by permission from Joey van Leeuwen, Drummer, Composer, Arranger
Web and Social Media Coach Kayla Nelson @lifeoflesion
The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.
Sponsored by Abridge
Inspired by and grateful to Estela Mata, Sharnae 'Nae" Smith, Jim Snedden, Christine Von Raesfeld, Hetlena Johnson, Jason Crum, Jason Jepson, Brooke Abbott, Phyllisa DeRoze, Bethany Yaeser, Ken Taylor, Cindy Chmielewski, Jesus Guillen, Christopher Quibar, Stephanie Chuang, Michelle, Nadine Baker, Jenna Greene, Kara Beck, Jasmin Pierre, Sue Rericha, Alexis Newman, Ryan Williams, Sam Seavey, Andrew Shorr, Howard Chang
Links
Healthe Voices website
YouTube Video of this episode
Related podcasts
https://health-hats.com/lead-by-example/
https://health-hats.com/but-you-can-total-self-care-at-13/
https://health-hats.com/gratitude-in-loss-together/
About the Show
Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this.
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The Show
Proem
Hi. Each of us can remember a moment, an event, or a time in our life when we realized the fragility of health. The first question I ask many of my guests is, when did you realize health was fragile? Breaks the ice. It tells a brief story. And it shifts the brain from the nervousness of a recorded conversation to something personal.
I recently attended Healthe Voices Conference sponsored by Janssen Johnson and Johnson Pharma. I. Janssen invited about 95 patient advocates for three days to network, learn, and party. What an opportunity. I brought my recording equipment and asked three questions. I asked,
When did you first realize health was fragile?
How do you recognize success in your advocacy?
When you meet a newbie advocate, where do you point them for skills, resources, and research?
I spoke with 26 of the participants for about five minutes each resulting in over two hours of recording. I can't include all four topics in one episode. So, in this episode, I'll share when people first realized health was fragile. I'll cover the others in subsequent episodes. For this episode, listening to the podcast audio will suffice, but seeing a snapshot of the speaker's beautiful faces might be nice. So read the transcript or watch the video on my YouTube channel. Thanks.
Podcast intro
Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged, cisgender, old white man of privilege who knows a little bit about a lot of healthcare. And a lot of our very little, we will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.
Estela Mata
We take health for granted. And when you know that your life can be taken away, your health conditions can make an impact, I think is when you realize it.
Sharnae ‘Nae” Smith
Oh my gosh. I'm gonna tell you, it was like right when I got diagnosed with Lupus. Because I was living my best life. I was happy, I was young, I was free, Didn't have any worries, no stress, nothing. And then to get that diagnosis that I had Lupus, that's when my whole life changed. It's one minute I'm going on trips, living my best life with all my friends, and working a job, and now it's just oh, okay, so now I have to tend to me. You get diagnosed. It's, it must be more about you. I realized then like health is just fragile. I was taking advantage of it every single day. And so now I realize how important it was. I should have been taking care of me from the beginning.
Jim Snedden
In 2005, I was handed a few too many issues. I got laid off from work. My daughter was raped, and I wound up getting psoriasis from that.
Christine Von Raesfeld
Oh, I think I have known that health was fragile my entire life. I will tell you, I have talked to people and I tell people that I don't remember a day in my life that I've ever had without pain or without ever some kind of issue. I would say my earliest memories were always pain and I experienced them even at like 3, 4, 5 years old. My first surgery was at five. I do tell people that being sick early in life and having this, has really given me a different sense of what life is. I live in Silicon Valley where most people are focused on money and all of that. I don't have that viewpoint. Money is nice, but I think really just having happiness and just knowing that you're okay. I meet a lot of people with money who are not happy. And even with my illnesses, I have a pretty amazing life.
Hetlena Johnson
I realized health was fragile when my health was threatened. Oh, okay. When my health was threatened, when. Being young you think that you can live forever and that everything is happening around you is nothing compared to you being you. And I wasn't jumping cars and things like that, but I was skateboarding, riding that bike grew around brothers and just living life like a thrill. Then all of a sudden you get hit with a chronic illness and it's whoa, stop. You cannot do the same thing that you were doing. That's when I realized, and my health was sensitive and that my life was fragile.
Jason Crum
I first realized my health was fragile during the pandemic. I was hospitalized and put into the nursing home because I had developed a poly neuropathy, poly peripheral neuropathy. I'm sorry. I also have HIV. As well as Monoclonal Gammopathy of a undetermined significance, which is a precursor to Multiple Myeloma. And I have chronic Hepatitis B. So I'm fragile.
Jason Jepson
I have schizophrenia and it was back when I was early in recovery and I was a danger to myself, my parents and they had to call the police on me. I wasn't arrested or anything like that, but they took me into custody. I was in handcuffed in the driveway. This is the bottom. But I knew I was going to finally get help and figure out what's going on inside my mind. Thank you.
Brooke Abbott
I probably was pretty little. I've had asthma in my whole life. I mostly advocate for inflammatory bowel disease, but I have been an asthma patient. I think I was diagnosed at one and a half, but I grew up during the AIDS epidemic. I had a lot of people in my life who were severely impacted by how it was mismanaged. And I understood very early how quickly your health can turn around. Knowing someone who was very healthy one week and then, unfortunately not alive in the next few weeks.
Phyllisa DeRoze
I realized health was fragile really when I was diagnosed with diabetes. But I was misdiagnosed. Oh. For eight years. Yeah. So, I would say I was 30 when I realized fragile health was fragile.
Bethany Yeiser
I think that I first realized that health was fragile when I was diagnosed with schizophrenia. I remember learning that it was a brain disorder that could affect anyone, and I learned that 1% of the population in every country, every race, every socioeconomic status, 1% of all of these people developed schizophrenia. It was no respector of persons.
Ken Taylor
I'm a caregiver. So, I don't have a diagnosis and so it took me a little while, but my wife who I give care too.
