00 Welcome to In Sickness + In Health
Description: Cara introduces the podcast and talks about why she started the show, what’s she’s learned along the way, and where she hopes the show will go. She also includes some clips from what’s to come on In Sickness + In Health.
I want to welcome you to In Sickness + In Health—a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.
In this episode, I’ll be talking about why I started the show, and what it will be about. At the end, I’ve also included some clips of what we have coming up in the near future on In Sickness + In Health. We’ll be posting a new episode every day this week as part of a series celebrating Dysautonomia Awareness Month.
I want to make clear that the In Sickness + In Health podcast nor any of its associated content does not constitute medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. I’ve been there, and I know how hard it can be to find the help you need, and then actually get that help by navigating the murky waters of our healthcare system. The whole thing is a big mess, we all know that, but I hope the show will help you feel less alone in those waters.
We’re all going through this together, but I can't stress enough how different we all are, even if we were to have identical medical files. There are so many factors that go into shaping a person's experience of health and illness, and just because something worked for one person does not mean it will work for you or anyone else. I want to ask my audience to respect the very personal decisions of my guests, and remember that the choices of others do not affect or reflect anything onto their own choices.
In Sickness + In Health won’t be focusing so much on those big picture issues of everything that is so wrong with our very broken system. Those conversations are already happening, and we’ll certainly be touching on them, but with this podcast I'm really excited to give patients a chance to tell their stories and help to further an understanding of the patient experience in the conversations about healthcare that so rarely involve Actual Sick People. We’ll be talking about things like working and relationships, and exploring what health really means when you’re sick all the time. It’s a show about life—life and where it intersects with our health.
But the show won't just be by/about/for sick people, We'll also be looking at topics like health literacy, advocacy, women's health, end of life issues, and some of the systemic issues that leave marginalized groups at such a disadvantage. We want to reach the still-undiagnosed and patients with chronic health conditions, but I hope In Sickness + In Health will also speak to caregivers and healthcare providers, and also everyone, because everyone will be a patient someday.
Health issues are stigmatized and difficult to talk about. People don’t know what to say when someone is going through a difficult time with their health, and so we’ve constructed a ridiculous culture of silence around this stuff. That’s something that really needs to change. According to the CDC, as of 2010, 1 in 2 American adults are living with a chronic health condition. That’s bananas. It’s especially bananas that we’re all wandering around pretending we’re healthy, or that we will be forever. By talking about this stuff, I hope we can normalize these issues, and reduce the stigma, so we can all feel a little less alone, and a lot more comfortable talking about it.
Working on the show has been a long and slow, but amazing experience. I’ve connected with old friends, and had the opportunity to make new ones. And I finally have an excuse to ask people extremely personal questions about their health, because I’m fascinated by this stuff. I’ve learned so much along the way, both about the chronic illness experience, and about myself. I’ve blogged a bit about what I’ve learned, which you can read at insicknesspod.com.
Doing this show has been very challenging for a number of reasons. I’m still figuring out how to record people in their natural habitats, so the audio won’t always be great. I’m learning as I go, and the sound quality of my interviews will only get better with time. Another occupational hazard of doing a show about illness that didn’t occur to me before, but seems so obvious now, is that guests have to cancel a lot because they’re sick or in the hospital. I myself spent most of the month of October sick in bed or in the bathroom, but definitely not able to work on the podcast, or anything else for that matter. I don’t really believe in miracles, but it is something of a miracle that I actually got this show done and out when I said I would. I hope to release episodes every Tuesday, but may not always get them done in time. BUT if you subscribe to the show on iTunes, Stitcher, Soundcloud or YouTube, follow us on social media @insicknesspod, or sign up for our newsletter at insicknesspod.com, you’ll never miss an episode.
There’s going to be a lot of talk on In Sickness + In Health about medical conditions people may not know much about. We’ll try not to bore you with too much medical mumbo jumbo on the show, but we will provide links in the show notes that are resources to learn more about what we talk about. I want this show to be a jumping off point for people to learn more.
I’m launching In Sickness + In Health with a series of episodes that feature interviews with dysautonomia patients to honor Dysautonomia Awareness Month. Look for all the episodes in your podcast feed or check insicknesspod.com. Like I said, for this series, we'll be posting a new episode every day this week, and I cannot wait to share them with you. The non-profit, Dysautonomia International, has been working hard to raise awareness, and their slogan for the Awareness Month is "Make Some Noise for Turquoise," so that’s exactly what we’re doing. With the podcast I plan to feature a wide variety of health experiences, but dysautonomia is personal for me. It affects me every single day, and has for most of my life, so I wanted to kick off the show with a series of interviews about something so close to my heart.
Dysautonomia is a blanket term for a number of conditions that affect the Autonomic Nervous Syndrome, that's the part responsible for all of the things that are supposed to happen automatically in our bodies, like heart rate, blood pressure, body temperature, and a bunch of other stuff. If you want to know more about dysautonomia and its various forms, listen to our episode 1, “Dysauto-whatta?” I interviewed the president of Dysautonomia International, and she gives us a crash course on exactly what dysautonomia is. We also talked about the diagnostic delay many patients face, and some of the research DI has been able to fund. I interviewed multiple people with dysautonomia because it can affect individuals with different primary diagnoses in drastically different ways. Myself and each person I interviewed have a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome. I know it’s a mouthful, we call it POTS for short, but POTS is only a small piece of what each of us have going on.
This series happens to contain young white women because they were the people already in my network, but I want to make clear that young white women are not the only group to experience these symptoms. There are unique experiences and barriers to diagnoses and treatment in other age, gender, socioeconomic, and racial groups that I want to have represented on the show too. So people of color, non-binary individuals, folks in remote areas who have poor access to healthcare, other demographics who don’t feel represented in chronic illness projects, please contact us. We’d love to get some of your stories on the show. Also, dudes, people who identify as men, we actually need to talk to more of you! I’ve had a hard time getting guys to open up about their health problems, and there’s so much stigma there too.
Like I said before, we are all so different, even if we have the same medical condition. That’s especially true with POTS, and exactly the reason I wanted to launch with a series on one condition. I call POTS the “Wedding Crasher of the dysautonomias” because it likes to show up to parties it’s not invited to. It comes up in the setting of immune dysfunction, infections, neurological diseases, and certain genetic conditions. I, and a couple of the people I interviewed for this series, have dysautonomia because of Ehlers-Danlos Syndrome, a genetic connective tissue disorder that you’ve probably never heard of, but will learn a lot more about as you listen to this podcast. You’ll see we all have such different constellations of diagnoses and experiences that are pretty varied. POTS is sometimes referred to as a “rare” condition because it's something that a lot of people haven’t heard of, but it is NOT rare, and it is dramatically under diagnosed.
I have a special interest in rare and rarely diagnosed diseases and disorders. Just because a condition is rare, does not mean it doesn’t affect anyone. We are out there, and we are falling through the cracks. According to the advocacy group Global Genes, 1 in 10 Americans is living with a rare disease or disorder. That is a massive number of people that our medical system is just not set up to serve.
The future of medicine may offer some hope for better addressing the needs of rare and complex patients. The president of the National Organization for Rare Disorders said recently: "In the long run, every disease will be rare.” What he means by that is that as we shift toward personalized medicine and learn more about how our genomes affect our health and response to treatment, there will be an opportunity to meet our needs as individual patients, and not just as blanket diagnoses. But we could also wind up in a dystopian nightmare, and that’s pretty likely, too. So who knows!
But I hope you’ll subscribe and tune in to In Sickness + In Health, we’ll keep you updated on that medical future/dystopian nightmare thing. We also have a lot of great stuff coming up for you, including our episodes celebrating Dysautonomia Awareness Month that are up this week—a new one every day! You can find us at insicknesspod.com, and Twitter Tumblr and Instagram @insicknesspod. Like us on Facebook! Do whatever it is you do to check us out on Google+ because we’re there too. We’ll be posting updates and content related to the show on the In Sickness + In Health blog and on social media. If you can take the time rate and review us on iTunes, we’d really appreciate it. It helps other people find the show; and tell your family, tell your friends, and tell your doctors! And stay with us right now to hear some of what’s coming up on the show in the near future.
And don’t forget to be excellent to yourselves and each other.