05 Autoimmunity + Friends (episode page)
Description: Cathy talks about grief (especially denial), The Spoon Theory, unsolicited advice, parenting with chronic illness, how her condition has affected her music career, and what it’s like to be “one of the lucky ones,” by having definitive disease markers in her blood. Cara makes an impassioned plea for you to get a flu shot this year, and Cathy shares two songs that she wrote while processing the grief of her illness. She lives with Rheumatoid Arthritis, Sjogren’s Syndrome, POTS, complex chronic headaches, and Interstitial Cystitis.
Hey there, 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.
Thank you SO MUCH for listening to the show. We’ve had such a great response so far to our Dysautonomia Series. At the time I’m recording this intro at 3:30 on Thursday afternoon, we’ve already had 435 plays since we launched on Tuesday. I am blown away. This is the fifth and last episode in our series honoring Dysautonomia Awareness Month. If you haven’t heard the other four episodes, go back and take a listen! We’ll be back next Tuesday with a new episode, so keep an eye on your podcast feeds or insicknesspod.com. On In Sickness + In Health, I plan to feature a wide variety of health experiences, but because dysautonomia is personal for me, I wanted to kick off the show with a series of interviews about something so very close to my heart. I’m so glad I did. We’ve gotten such great feedback, and I’ve even tricked some people into learning a thing or two.
This podcast or 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. If you want to know why I think these topics are so important, go back and listen to episode 00, “Welcome to In Sickness + In Health.” I explain why I started the podcast, what I’ve learned along the way, and what I hope the show will be.
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. 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. This is especially true about diets, which we talk a bit about in this episode.
That’s Cathy, she is a musician and mother who lives with the autoimmune diseases, Rheumatoid Arthritis and Sjogren’s Syndrome, dysautonomia that includes Postural Orthostatic Tachycardia Syndrome, or POTS, complex chronic headaches, and the still very poorly understood bladder condition, Interstitial Cystitis.
If you’ve never heard of, or don’t know a lot about any of these conditions, I put some links in the show notes to find out more. Cathy will explain more about what these means for her in a bit, but If you want to know more about dysautonomia and its various forms, go back and listen to episode 1, "Dysauto-whatta?!” with Dysautonomia International’s president, Lauren Stiles. She gives us a crash course on just what dysautonomia is, and we talk about the diagnostic delay many patients face, her own diagnostic odyssey, and some of the research her organization has been able to fund.
Before we get into the interview, I want to introduce a concept that we already have and will be referencing a lot on the show. It’s called “The Spoon Theory,” and it comes from an essay written by Christine Miserandino. As a young woman in the piece, she describes the process of explaining to her friend what living with the chronic fatigue of Lupus is like for her. Chronic fatigue among chronic illness patients is common, and very under appreciated by the medical community. There’s also not a whole lot we can do about it. Flawed though they are, we have conventions like the 1-10 pain scale for talking about pain, but there is no language for talking about the kind of fatigue we experience. Use of the spoon theory to talk about fatigue and our limited energy resources has made its way into patient communities, and we’ll be having plenty of conversations on the podcast where spoon management comes up. I’ll link to the original essay in the show notes, but since Cathy mentions The Spoon Theory in our conversation, I’ll let her explain just what it means:
[Spoon Theory clip]
And one last thing: I want to take a moment to encourage you to get a flu shot this year if you can. In the United States alone, The Flu kills 36,000 people a year, and more than 200,000 people wind up in the hospital because of it. We hear about the very very young and the very very old who are at risk for these kinds of complications, but there are millions of other people at risk because of primary or acquired immune deficiencies. It is likely that someone you know and love is at risk. People like Ilana, who in episode 02 talked about the challenges of living with a primary immune deficiency disease. And people like today’s guest Cathy, and others with autoimmune diseases, who take medications that impair the immune system. Then there’s people like me; I don’t have any immune deficiencies, but getting sick with anything puts me at risk of serious complications due to my underlying chronic health conditions. Others cannot get the vaccine due to problems with their immune system, or allergy to the ingredients. Those people rely on heard immunity, and people who are able to be vaccinated. The flu is not fun for anyone, but for some people, the flu can be really dangerous. Contrary to popular belief, the flu vaccine does NOT cause you to contract a mini version of the flu. Some people experience flu-like symptoms after the vaccine due to immune system activity. I’m one of those people, but I get the shot anyway because I know those symptoms will pass within a couple of days, and it’s a hell of a lot better than getting the actual flu. Many of the major pharmacies even offer flu shots right in the store. SO PLEASE, get a flu shot if you can, and don’t forget to wash your hands this flu season.
I’m really excited to share this interview with you. This is one of my favorite interviews I’ve done so far. Cathy had so many interesting things to say, some of which made me rethink some things about my own condition and how I deal with it. Again, please forgive the sound quality. We wound up recording outside, so there’s some nature and landscaping noise, but it was either that or recording at Cathy’s house while her roof was being worked on, so. I hope you enjoy the interview as much as I did. Stay with us until the end because Cathy actually shares with us two of the songs she wrote while processing the grief of her illness.
I want to make clear here that we are not saying that cutting out gluten doesn’t work for anyone. It works for some people to some extent. And it is especially important, as Cathy pointed out, for those with Celiac disease. But that’s not what we’re talking about here. Each person is different, and different dietary changes work for different people. For example, I’m fine with gluten, and when my stomach acts up, bread products are just about the only thing I CAN eat. But I know I have a problem digesting other things like corn and brown rice. Those are two of the main wheat substitutes used in gluten free foods, so a gluten free diet doesn’t make much sense for me. I’ve tried it, and it really didn’t work for me. Again, that is FOR ME. If it works for you, that is awesome. Please, get down with your gluten free bad self. But what we’re talking about here is how incredibly frustrating it can be to get the same, uninformed suggestions for lifestyle changes over and over again, especially when you’ve already tried those changes, and it didn’t make a difference for you.
[rest of interview]
Thank you so much for listening to In Sickness + In Health., I hope you enjoyed this episode. If you did, subscribe and stay tuned for everything we have to come, and check out our other episodes celebrating Dysautonomia Awareness Month that are up right now! We’ll be back with a new episode next Tuesday, and you can find us in your podcast feeds and on insicknesspod.com. You can also find us on Twitter, Tumblr, and Instagram @insicknesspod.
Please rate and review us on iTunes, it helps other people find the show, and tell your family, tell your friends, and tell your doctors! And while you’re there, get a dang flu shot.
But most importantly don’t forget to be excellent to yourselves and each other. Which includes getting a flu shot and washing your hands.