Rare Diseases with Kristine Hoestermann of the Because We Are Strong Podcast


What would it feel like not knowing?

For most of our life, we always get to know what’s wrong, how to fix it, and what comes next. As we hear today, that is not always the case when it comes to diseases and for many people, they live life, not knowing what’s wrong or how long they have.

Our guest Kristine opens up about her story of feeling alone and a passion that came from it to find things in common within the rare disease community to help people feel they are not alone.

Key Topics:
  • What is the purpose of the Because We Are Strong podcast (0:58)
  • The backstory leading up to why a podcast like this was needed (1:46)
  • Dealing with life, without a diagnosis (3:00)
  • How common is it to live with a disease and not know what’s wrong (4:00)
  • What made podcasting the best medium for this cause (6:30)
  • What is missing in the podcast landscape that would have helped get started (7:30)
  • What has been the impact of the podcast (9:37)
  • If you just got started today, what did you need to know (11:00)
  • Dealing with guess pitching (13:00)
  • How did the RARE apparel clothing company fit into the strategy (15:49)
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Thanks for Listening!

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And if you would like to be a guest on Causepods, please fill out this form and schedule your chat here.

Speaker 2 (00:02)
Hi and welcome to Cosbas. I’m your host, Matthew Passy, here at Cosbaz. We have one simple mission to highlight the amazing folks who are using podcasts as a way to raise awareness for good causes and make the world a better or place, whether it’s in their own local community or they’re taking on global issues. Please visit us at Causepods. Org, where you can learn about our guests, show their favorite charitable causes. Join our Facebook group with Resources for Causebased Podcasters and find a link where you yourself could be a guest here on Causepods again.

Speaker 2 (00:34)
That’s all at Causepods.

Speaker 1 (00:36)

Speaker 2 (00:40)
All right. We are going to take you down to our nation’s capital. We are chatting with Christine Holsterman, host and creator of the Because We Are Strong Podcast. She does that with her co host. But Christine, welcome to Pause Pods.

Speaker 1 (00:54)
Thank you, Matthew, for having me a big fan.

Speaker 2 (00:57)
Oh, thank you. So tell us what is because we are strong all about so because we are Strong is about all of us.

Speaker 1 (01:06)
All of our stories.

Speaker 2 (01:07)

Speaker 1 (01:09)
That makes us who we are makes us rare, makes us chronic, makes us zebras or spoonies. It’s about almost like the human experience. We tend to have a lot of people in the rare disease space. It really is for anyone to share kind of their life story.

Speaker 2 (01:30)
So in a similar way of cause, but it’s not necessarily one specific cause, but elevating lots of other people’s different causes.

Speaker 1 (01:40)
Yes, absolutely.

Speaker 2 (01:41)
So I got to ask, what made you want to start and do a podcast like this? You mentioned rare disease, and I know that is somewhat of a central focus of this. But what brought this all about?

Speaker 1 (01:52)
I got sick in 2016. I was a perfectly healthy 27 year old living on the Hill, if you will, running marathons and then my health just deteriorated. And it never occurred to me that you could wake up sick and never get better. Like that concept wasn’t there for me. And like many, I felt extremely alone. I didn’t fit into one world or the other. My previous world I couldn’t communicate in, and I didn’t know where I fit yet in the rare disease space. And so I still don’t have a diagnosis.

Speaker 1 (02:24)
And so where do you fit when there’s nowhere to go? I felt like I was an intruder. If I was in the cancer space, I was an intruder. If I was in the lupus space and so really wanted to create a space for almost like the misfit toys just to let them know that they weren’t alone and that there was commonality.

Speaker 2 (02:46)
That has got to be incredibly frustrating in a very different example. Right. Like, I might feel sick one day, go to the doctor and they’re like, well, probably a virus. Not 100% sure. But give it a week or so and you’ll be okay. And it’s like, I’d rather have a real answer than just you’ll be better in two weeks. You’re talking about almost six years now without a true diagnosis. How do you battle that frustration?

Speaker 1 (03:14)
I will say that rare and the offsets of that, such as because you’re strong podcasts are really what saved my life. I was going down a very dark path in which a lot, like many others out there struggling with anxiety, depression, honestly, suicidal ideation. And something I try to talk about more is that I was done. I was like, I just don’t want to play this game anymore, doctor after a doctor. And that’s where this kind of all sparked from was the idea that, well, if I can’t find a spot for myself, let me create one.

Speaker 1 (03:53)
And I never expected there to be so many people, even within those people who have categories that felt the way I did that felt like they didn’t have any place to go. So I will say this has become such a saving Grace for me, and I’m blessed every day to do it.

Speaker 2 (04:17)
Are the people that you talk to when I see looking at some of your interviews, right? Like, folks have very specific examples. Maybe it’s colorectal cancer, or maybe it’s somebody with polyps or a very specific, unique diagnosis. But how many folks do you talk to her in your position where something is wrong, but you still don’t have a true specific diagnosis for it?

Speaker 1 (04:41)
I would say, who come on the show. Not that many. And I think part of that is because a lot of times it happens in more than the beginning of the journey, and you’re not maybe ready to talk about it. You’re not ready to talk about those frustrations because there’s still hope, right? They’re still, like running the battery of tests, etcetera. But like, just in general, on my platform, I encounter at least seven people a day who are like, oh my gosh, I caught a part of your story and that’s similar to what I’m going through.

Speaker 1 (05:17)
And so I think that’s been amazing. I mean, seven years on average to get a diagnosis. I have 42 diagnosis on my chart and none of which anyone is willing to actually claim as my diagnosis. So it’s really frustrating, and it’s hard to want to go back to the doctors. What’s the point?

Speaker 2 (05:40)
I know you said doing the podcast has kind of helped you find that sense of community. But what else do you do to kind of cope and get through the day and keep a positive attitude?

Speaker 1 (05:51)
I think just really, what all of us has given me is the ability to truly start to own who I am. I no longer could run. I no longer was really good at my job, very type A personality. And now I’m like brain full of mush and to really tap into my own creativity and realize that there’s a whole other side of me that I didn’t even know because it was kind of caught up within a very rigid structure of who I used to be. But creating has been a huge part of my life since, and a very big coping skill.

Speaker 2 (06:31)
So what led you to podcast specifically?

Speaker 1 (06:36)
So my cohost, Teresa, her son Owen. No, he does not because we’re strong. He has BWS back with syndrome.

Speaker 2 (06:46)

Speaker 1 (06:48)
She had been like, I really want to podcast. I really want a podcast. I would say she’s like, the nice, calm voice you hear in the beginning. And I’m like, I don’t want to podcast. I don’t want my voice on there.

Speaker 2 (06:58)

Speaker 1 (07:00)
And I’m more of like the let me text savvy, figure this all out. And so she kind of pushed us to start sooner than I probably would have. But it’s been great. We’ve been able to get just came up on a year in September, and we have 75 episodes out grateful for the push that she gave me.

Speaker 2 (07:18)
What have been some of the big challenges or struggles not to being behind the mic, but just in general, to having a podcast finding guests, finding your audience.

Speaker 1 (07:29)

Speaker 2 (07:30)
What are some of the things that even now you wish you had more guidance on or do you wish there were better solutions out there for you?

Speaker 1 (07:38)
I always wish that I could have maybe, like, another 24 hours in the day to do everything that I would love to do. But Besides that, I would say we started with a pretty solid niche, those in this invisible space that was kind of a check. Guests haven’t been a problem. I think we’re currently booked out pretty far, which has been amazing. But I think I wish there was a little bit more access to fundAge, right. Because I tried to edit the first few episodes and sorry to anyone out there who is because we’re strong fan.

Speaker 1 (08:14)
I know you can tell when we started getting an editor, but there’s only so much you can do with a limited budget. And I would say there is more access for new podcasters or podcasters with a nice purpose to kind of get some of those things that podcasts who have millions and millions of subscribers are afforded.

Speaker 2 (08:41)
That would be like one of our biggest challenges is being able to break through the noise of all the professional organizations and outfits and celebrities that are doing the same thing and taking up a lot of the oxygen.

Speaker 1 (08:53)
Yeah. And I think that’s a great point. Sometimes it can be frustrating when you see someone’s like, start a podcast, and they may have, I guess that’s like Life and Equity and all that stuff, but they kind of go for the professional shoot and all this stuff. And you’re kind of sitting at the bottom, just like screaming for something to be heard. But ultimately, maybe I see the world with rose colored glasses. But I always think kind of like the good guys win in the end, or as long as your intentions are in the right space, it will all work out.

Speaker 2 (09:29)
Have you found? I mean, you said that the podcast has been kind of a source of positivity in your world. What have been some of those positive takeaways from doing the show other than the guests you get to meet and the time you spend doing this with your co host?

Speaker 1 (09:46)
I am a nerd. And so I like the challenge of figuring out how to make a positive cast successful. Or, like, for instance, the artwork of because we’re strong. It’s actually a mosaic of every single person who’s been on the show. And so it looks like because we’re strong from afar. But if you actually looked at the actual image, it’s a picture of everyone. So I love small details like that and being able to figure things out that’s gratifying for me and to connect with honesty. Like, people like you.

Speaker 1 (10:22)
I remember when I first started, I think I had, like, two episodes out, and I was like, hey, you want to be on this podcast and you’re like, yeah, maybe next year. But to watch now, after a year later to be able to be on your show, things like that from you are really cool.

Speaker 2 (10:36)
And by the way, everyone, if you go to clauspots. Org and you look for the episode, we’ll actually have the artwork there so you can see it. And if you Zoom in, you can see it’s a bunch of squares in the background. So it’s a very cool effect. Really. I like that detail. It’s a nice touch of what you’re trying to create there. What about others? So you’ve been doing this for a year, right? Almost 75 episodes at the time that we’re talking. What other lessons have you learned that maybe you would pass on to somebody else who has a passion, has a cause, is thinking about doing this, but may not know the first place where to start.

Speaker 1 (11:13)
I’m really big on community over competition. So I would say that I’m an open book. If you want to start, just start, be brave enough to know that your voice is worth hearing. And there are people out there who genuinely just would be willing to give you the advice or the support that you need. I’m one of those people. And like I said, I know that’s not everyone’s take on it. But for me, just start. Don’t let your fear hold you back. There’s never going to be a right time to do it.

Speaker 1 (11:48)
And don’t be afraid to ask because what’s the worst anyone can say to you?

Speaker 2 (11:52)

Speaker 1 (11:52)
And then you keep moving.

Speaker 2 (11:55)
You find the next person who will say, yes.

Speaker 1 (11:58)
We just had an Olympian who has myofitis and legitimately. I just heard the NBC reporter say it because I’m a huge Olympics fan and reached out to him and was just like, hey, I know you’re like an Olympic star now and just one, the Manhattan Volleyball open, but want to be on my podcast within, I think an hour or two, he said yes. And so like you said, there’s always going to be someone who wants to participate in what you’re doing.

Speaker 2 (12:26)
I love that lesson, because so often I’m talking to clients who are like, I’m trying to get these big, big a list guests and celebrities and the whales, as they call it, because they’re clients and things like that. And they say yes. But there’s so many conditions in this. And if it’s a struggle to get the yes or it’s a struggle to arrange or it’s a struggle to get them to use a mic. If they are making it difficult to be on the show, imagine how difficult they are going to be as a guest on your show and what kind of quality content you’re going to create as a result of that experience.

Speaker 2 (13:02)
If somebody is pushing back, it’s okay to just move on to somebody else.

Speaker 1 (13:06)
Absolutely. And I think that’s a great point, because I think too sometimes I think that’s one thing because we’re strong has definitely taught me is that sometimes we’re so into the whales, as you say or into how do we blow this up? And we blow this up by getting this on right? Like, a ton of big people’s platforms. But I think that’s really not the case. Some of my best episodes are ones that have statistically. I mean, speaking, like, have the smallest following because it’s about the content that you’re putting out there.

Speaker 1 (13:39)
And sometimes you put out great episodes with all these really big people and they flop.

Speaker 2 (13:45)

Speaker 1 (13:47)
I think that’s really important to realize that you don’t need the big whales. They won’t make or break you. You’re the only one that can make or break.

Speaker 2 (13:57)
I love that you bring that up because yes. So often people think that getting that alist celebrity is going to be the key to unlocking a million downloads. That’s what’s going to make it special. It’s not about the power of the celebrity of the guests, but it’s the making sure you’re getting the right kind of guest. Just getting a big name guest for the sake of getting a big name guest doesn’t guarantee that the content is going to be fulfilling to your audience, or it’s going to be impactful for your audience.

Speaker 2 (14:27)
And truthfully, many times those big name celebrities, they won’t share the episode or if they do it’s very right.

Speaker 1 (14:36)

Speaker 2 (14:36)

Speaker 1 (14:36)
Although, like, we share what you posted on their story, which is great but honestly not beneficial to your show. And then depending on how far you from your audience, then the people in your audience aren’t even listening to that episode. And so all that work and all that stuff for a very little outcome. And that’s why I want to share everybody’s story, and we’ll just keep going and sharing as many stories as I can.

Speaker 2 (15:09)
I think that’s a great positive attitude to keep and something that everybody who is getting into this game should be thinking about.

Speaker 1 (15:16)

Speaker 2 (15:16)
It’s chasing the celebrity, chasing that download high. Even if you attain it, you’re probably going to crash back down really quickly. And it’s not going to feel nearly as satisfying as it sounds on paper. So as part of everyone’s appearance on call spots, we always like to give them the opportunity to talk about a charity. But you actually run online shop findyourrare. Com. The shop is called Rare or brand with a purpose. And as part of that, you actually let your customers pick the charity that they want to support.

Speaker 2 (15:49)
So tell us a little bit more about the rare shop and how it works for consumers who want to check it out.

Speaker 1 (15:56)
Creating things. I failed art everyone. So I think that’s an important thing to disclose is that I failed art. And now I’m in this thing where all I feel like the best way for me to express myself is to kind of create something. So started just with the rare in the square, and I knew I wanted to give back. So when I started the shop, I was like, okay, I’m going to get to this charity and this charity, and then I would sit there and be like, your voice matters all this stuff.

Speaker 1 (16:26)
And I was like, wow, that’s kind of not aligned with the brand or the mission. If I’m over here saying your voice matters, but it’s going to go to the charity that I want. And so I started shop with a purpose and not just shop with a purpose. Shop with your purpose, which gives you the ability to donate the 15% that goes to charity at checkout to your particular cause. So if you’re a cancer survivor and you wanted to go to a specific cancer things, we have the ones that we feature.

Speaker 1 (17:00)
But then there’s like a comment box to place in or you can actually nominate your charity to be on the list. So there’s, like, two different ways to go about it. But no matter what we have about, like, I’d say between seven and ten at any given time, ranging from racial equity to LGBTQ rights to very specific and small diseases. And that’s kind of just my way of saying that your voice matters down to where the shirt 15% goes to, because I think it’s important.

Speaker 2 (17:39)
I think that’s a great concept and a great way for folks to support. So you can go to findyourrare. Com, purchase your item, choose the charitable cause you want to support. And in doing so, you’re also supporting Christine, and because we are strong group, right. I’m assuming you are still a profitable entity.

Speaker 1 (18:03)
It’s definitely not a nonprofit. It’s the one with a B in it. But don’t tell the IRS. I don’t understand any of that. But also we have it because we’re strong. If you are a fan of the show, we do have because we’re strong section where you can find authors, books and anyone we’ve had that is doing stuff. We also link out to all that as well as some of my personal favorite sayings from the show.

Speaker 2 (18:31)
Very cool. So again, if you go to Cosponsora, we’ll have a link to the store, find your rare. Com as well as a link to find the podcast. Because we are strong, the website is bwstpod. Com link their link to the show link to Apple Google Spotify, so we encourage you to check it out and check out the artwork that features all the images of the guests who have been on the show previously. Christine, thank you so much for joining us here on Cosmos Today.

Speaker 1 (18:58)
Oh, thank you, Matthew.

Speaker 2 (19:01)
Thanks for listening to this episode of Cause Pods. If you’ve been inspired by the work of our guests, please check out the show notes to this episode in your podcasting app or at cospods. Org. There you will find links to their show, their website, their podcast links on Apple Google Spotify as well as a link to support the charity that they highlighted here in this episode. You will also find at causepods. Org a way to subscribe to this show on your favorite podcasting app. How to sign up to be a guest on this show and a link to our Facebook group, which is going to have special resources just for the folks who are podcasting for a good Cause.

Speaker 2 (19:37)
And I can tell you right now we’ve got one great deal from our friends at Pod page, but you’re only going to learn about it and get that special deal if you are a member of the Facebook group for Causepods and before I go, I should say thank you. In particular, this show is edited and produced by Ben Killoy of the Military Veteran Dad’s Podcast. And what a great job he has done and all this is made possible because of the great support that I received from Shannon Rojas here at thepodcastonsultant.

Speaker 2 (20:02)
Com. Once again, if you want to learn more, go to cospots. Org. Thank you so much and we will see you next time on Cause pods.

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