Kristine's Journey: Resilience, Rare Diagnoses, and Empowering Community

Can you imagine going from running marathons to fighting for a diagnosis that doctors initially dismissed as stress? Kristine has lived this journey, and she shares it with us in a gripping conversation about her struggle with chronic illness and rare diagnoses. From the first strange tweak in her foot to the emotional toll of being invalidated by medical professionals, Kristine's story is one of resilience and the critical importance of having an advocate in the healthcare system. Her mother-in-law, a doctor, provided the support Kristine needed to document her symptoms meticulously, finally making the medical community listen.

Her experience shows that sometimes, the most significant support we can offer is not trying to fix things but just listening and connecting through shared invisible struggles.

We also explore Rare's offerings, from custom t-shirts and stickers to the innovative treatment-accessible sweatshirt. Kristine highlights the importance of size inclusivity and comfort, ensuring that everyone can find something meaningful in her brand. Beyond clothing, Rare's mission extends to mental health support through moderated groups on the Cabana platform, particularly for underserved communities. Kristine's insights into creating judgment-free spaces for those battling chronic illnesses underline the episode's overarching message: turning personal challenges into a beacon of hope and connection for others.

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Chapters

• 0:00 Navigating Chronic Illness and Rare Diagnoses
• 13:09 Empathy and Connection in Chronic Illness
• 23:33 Apparel Brand With Purpose
• 32:32 Expanding Access to Mental Health Platforms

Transcript

Jen: 0:41

Hi my Spoonie your Gracefully. It's , -Jen, and I have one badass baddie that I'm so excited to introduce. It's about dang time, Kristine, , how are you, Jennifer?

Kristine: 0:54

I cannot even tell you. Yes, it's about dang time. I have been watching your work for a very long time and I love everything you're doing, so thanks for having me.

Jen: 1:03

Likewise, I just feel like you are just an amazing person. Everything that you do, you're a beacon of hope and joy and spirit. If you are not familiar with Christine, with Rare, go check her out and find her, because, my gosh, you're in for a treat. You are way too kind. So let's just dive in and let's talk about some chronic illness and about rare also. But let's start at the beginning. Let's start at the beginning of your journey.

Kristine: 1:34

Oof, I know that feels loaded. That's heavy. Yeah, that is heavy. First of all, it's different being on this side of the mic. I didn't realize how long it's been since I've been a guest, but I feel like I'm in love with it. Slash, also oddly nervous Giving up that control man. No. So my journey started in 2016.

Kristine: 1:57

I was like abnormally healthy and living my best life. You know, freshly engaged, had a really great job on Capitol Hill, running marathons best shape of my life and I remember like how my first symptom, I remember, is I got like a tweak in my foot but I was running marathons. Hello, like that happens. You know I can remember it was August. You know we were doing the Capitol loop and I was just like my feet all of a sudden felt like bricks Little did I know that like that one symptom was like the start of this snowball.

Kristine: 2:30

But you know, when I say abnormally healthy as a kid, abnormally healthy, like used to want so bad to be sick, wanted to like stay home with my mom, but like never really even had strep throat, never broke a bone. Like abnormally healthy. I was a gymnast and so my flexibility and stuff was just an asset to me. It never seemed like a problem, did that all the way through college. So, yeah, I was 27 when the onset began and it was so slow and I just thought it was like aging. Honestly, I was just like you know this must be what approaching 30 looks like and had it not been for the fatigue, I don't know if I even ever would have gone to the doctor. But the fatigue, just like I knew the level I was used to like performing or doing things, and it just like slowly chipped away and then kind of went on my diagnosis journey from there. But yeah, that's the beginning of the beginning.

Jen: 3:30

Oh my gosh. Okay, so what year was that? 2016. 2016. Okay, I'm pretty sure you said that, but wow, it was a lot to. I always forget numbers. I don't know if you're like that, but when people tell me numbers, I'm like, okay, wait a minute, what was that? Again, I was running. Oh my gosh, I'm telling you, like there was no way I was going to remember dates in history class back in the day. Okay, so 2016 and you're running marathons. You're living your best life. I mean shit.

Kristine: 3:58

Yeah, it was like I said and I think, looking healthy but knowing something was so wrong. There was a lot going on for me at the time too. Right, I had recently come out to my Catholic Republican family that I would be marrying a female, I had switched schools, so there was a lot of stress in my life. So it was easy to also attribute like a lot of what I was feeling to stress and depression. I'm a therapist by trade, so you know, my first doctor was just like you're a therapist, like you know how good your coping skills are, which, looking back, is just like false, let me tell you, just false.

Kristine: 4:30

But yeah, it was really really slow. I it's like death by a thousand paper cuts. Honestly, that time period until I woke up and I was just a shell of myself and felt like I was just fighting for anybody to believe me that there was something like happening inside and it wasn't just depression and it wasn't just mental health which, oddly enough, like now being later in my journey, I see how it kind of all interweaves but at the time it felt like it was invalidating, like I felt like you were telling me that it was all in my head. That was the message I was getting every time someone would talk about like the depression or going to see a therapist. I was just like you, don't believe me.

Jen: 5:12

That's terrible, and so do you feel like there was anyone that was listening and actually really heard you and wanted to help you.

Kristine: 5:21

My mother-in-law is a doctor, okay, and she was a blessing because test after test was just coming out like negative or neutral, you know, not moving those markers Was in DC. I was like supposed to have a great medical care. You know, we had John Hopkins, we were at American, we were at Georgetown, we were at these big universities that are supposed to be like teaching hospitals and nothing was happening. And she really kind of guided me through. You know, she advised me to take pictures of every time my joints would swell or every random rash I would get. And that was a really big pivoting point for me was kind of taking her guidance and how to make the medical community like listen to me.

Jen: 6:02

My gosh. Well, I'm so thankful that you had that in your life, because there's so many people that don't even have that 100%. And so what was it like? As you were seeing all these I'm assuming specialists and trying to express to them what was going on, I remember a few points distinctly, but most of it honestly was so numbing it was.

Kristine: 6:23

It was like I was going from doctor to doctor trying to figure out how I was going to keep my job, one, two, kind of just going for Carrie, going for my mom, going for everybody else, um, but finding really no hope. And then I distinctly remember getting a CAT scan and, mind you, I had puked all over the CAT scan because I'm allergic to sulfa and had sulfamites in it and, like you know, everyone's saying it's fine.

Kristine: 6:51

And so I puked all over the contrast CAT scan for it to come up negative. And I walked out and I just stopped and I was like I'm okay if I'm schizophrenic, I'm okay if I'm a hypochondriac, I'm okay. I was like, but I can't do this for another second. So please check me into a mental institution if you all think that that's what's wrong with me. I was so desperate for relief from not just the pain and the fatigue and the hamster wheel but the mental warfare and the isolation I was feeling and experiencing that I just wanted to be checked in. I was like I'm okay with that, I'm okay with that outcome. Just please get me some sort of help, because I can't live this for another day.

Jen: 7:36

I think that's an important thing that you touched on, because I think so many of us at some point start to think we're crazy, and if you think I'm crazy, then help me in that aspect. But right now whatever you're doing is not helping me, so so let's start somewhere, and we should never feel crazy.

Kristine: 7:54

We shouldn't Absolutely. And I think I had such a delusional understanding of the medical system, and 100%. I didn't realize this for until a few years ago. But Grey's Anatomy is the culprit of that Because, again, abnormally healthy child, except for, again, a few wellness visits. That was my interaction with the medical system. And then you have these dramas where they thrive off of figuring it out. So my understanding was I'd come with a medical complexity and you would do everything in your power to try to figure it out.

Kristine: 8:24

It never occurred to me that there was a space in which people push you away everything in your power to try to figure it out. It never occurred to me that there was a space in which people push you away. They didn't want to deal with you. Essentially, if you weren't fit into this little box, no one wanted the medical mystery. No one wanted this, and it wasn't until I loved Grey's Anatomy. I still do, but I cannot watch it because I realized at some point during COVID I was like, oh my God, the reason I have not been able to like, keep up with this is because I'm so traumatized from the medical system and watching it just infuriated me, Watching.

Kristine: 8:56

You know these fictional characters and I'm well aware that they're fictional, but it was still. My understanding of the medical system was you know that you get sick, you get better. Right Like you fight sick, you get better. Right you fight something, you get better. It truly never occurred to me that you could wake up sick and never get better, that this existence was here, and that was probably the biggest internal mind shift I had to come up with was there's not going to be a pill, there's not going to be one treatment, there's not going to be something that fixes you. This is it, Welcome.

Jen: 9:28

Exactly, exactly, and I think I've touched on this with other people before, but I'm going to bring it up again. We grew up in an era and a timeframe watching these TV shows, and it was a learned thing. We all assumed that you go to the doctor, they give you an answer, they give you a pill, they give you a treatment, they take a test, you're going to get better. It never occurred to us that they're not going to have an answer, that we're going to be complex or that we're going to deal with gaslighting. It just never even occurred to us, and I even thought, okay, they're going to give me something and I'm going to live my normal life again.

Kristine: 10:09

I'm going to do all the things again. Well, exactly Like you said. You know we're taught that you get sick, you get better, even cancer, right, like there was two outcomes for cancer, in my opinion, before like being exposed to this world, there was, you know, get cancer, fight like hell and live. Get cancer, fight like hell and die. Like I know that sounds morbid, but that was, that was truly how I thought of things. You know, get strep throat, recover. You know, take treatment, do as your doctor says. You know what do you do when you can do everything right? You can do what your doctor says and nothing gets better.

Jen: 10:40

Yeah exactly what do you do, and and so that brings us to Rare. What did you do?

Kristine: 10:46

What did I do, gosh? This was so we're talking 2016, 2017, a very different social media plot, like landscape. There was nothing. Like when I tell you, I would type in whatever these like random things, like small fiber neuropathy or whatever like thing they gave me and I was getting just like nothing back, and that just perpetuated this feeling of loneliness, this like desperation for someone to understand, someone, to be able to read something that felt like it was relatable, like I needed some sort of hope, I needed something, and it was. I couldn't find it anywhere and so I kind of, just in that moment, was like you know what, okay, well, if it's not there, like how we got to fix that. And I tell the story a lot, so I apologize if anyone listening has heard it, but you know, I didn't know what to do, like when I, when I came to my mind that, like I call it, like when I woke up and realized how bad like I like everything really was, I was like that's when I like Googled and realized there was nothing to Google and I was like, well, now what? Like I can have two choices I can go back into the depths of despair in which I'm just trying to survive and keep my job, or I can do.

Kristine: 11:59

September of 2018, uh, carrie and I are in, you know, another argument about a doctor, another, just like miscommunication, and I'm I can be a little sassy no way, no, not at all. But uh, you know, she, she really struggled with not being able to understand like you look healthy, kind of thing. It was her first time exposed to any of this as well, and she didn't understand why. I didn't want to go to the doctor again, all this stuff, and I she made a comment essentially saying that like, but you don't look sick, something's not. It wasn't exactly that, but something you know, just like one of those buttons that are just like fuck all the way off. One of the trigger phrases, exactly, and at the time I was coaching One of the trigger phrases this is rare Like, because, like, I felt like that was my way of getting back at her being like you so badly want to see something like is wrong here.

Kristine: 13:09

I will get, I will plaster it all over and midway down, walking down the stairs to present my like in my opinion, like win to this fight, like mic drop moment, I was like, oh, my fucking God, if I could start the conversation. That's half the battle. If I could wear what's happening to me, I could start the conversation. That's half the battle. If I could wear what's happening to me, I could open up this path to move forward and to explain. That didn't feel so awkward or didn't feel like I was lying or didn't feel gaslighting, and so I knew in that moment exactly what I needed to do. I swear it was like the most enlightening moment. I was like I got to start a clothing line, I got to start, I got to start, find a way to start the conversation and from there I launched Rare uh, three months after. So it was a. It was a whirlwind.

Jen: 13:53

Wow. So my big question is did you win the conversation?

Kristine: 13:59

Oh, in my mind I completely won. I'm not sure in her mind, because that whole thing also just bought her, you know. I mean, she's such a sport, she's such a blessing. She's always been so supportive but did bring her a company she did not ask for, along with the disease she did not sign up for. But in my mind I completely won. But it kind of just evolved from there and, you know, I started to share my story really authentically online Again. Another crazy part was never thinking that the hardest part was going to be people I knew watching it. That's a whole other, I guess, like topic. But people were just flooding my inbox just kind of telling me like, oh my gosh, like I never I felt so alone. Thank you for sharing this studio just to remind me of like why, why I started or why when I want to give up, because no one deserves to feel as alone as I did in those moments or as anyone else who reached out to me in those moments did.

Jen: 14:54

And so it kind of just evolved from there, you know your story is like so many, so many of us, because we we've experienced something like you have and we're like you know what Screw this? I'm not doing this alone anymore. I'm not doing this alone anymore and I don't want anyone else to feel this way. And look what you've done and you've inspired, encouraged and helped people.

Kristine: 15:20

It still seems. I mean, it's incredibly humbling, I think every single second, and I just never could have imagined. Incredibly humbling, I think, every single second, and I just never could have imagined. I often say that this disease has given me so much more than it's taken and, trust me, it has taken a lot on the daily basis, but as the person I am, just the connections, the amazing humans, their ability to open up my eyes and really see just like the invisible struggles that are not there.

Kristine: 15:54

Therapist by trade, I think I'm pretty empathetic, but there's something about going through this. That is no pun intended. Unlike any other, you know like it's. It truly just highlights like the human resilience and you don't know what anyone's going through. You know you don't know what it took for you to get to this podcast recording today, for me to get here. There's a million things that happen, a million struggles. Whether it's something as small as you didn't get the ice cream you wanted, or got into an argument with one of your family members, or you're in excruciating pain. Everybody's going against something and we can be there for each other without experiencing the exact same thing that the other person's experiencing.

Jen: 16:33

Absolutely, because behind every smile you have no idea how many tears are there, how many tears are being held back, how many people are hiding in their closet crying. You just never know.

Kristine: 16:44

Absolutely, and that's why, you know, when I, when I saw rare and it started to expand like, I knew right away that I it was going to be an inclusive space. Yeah, Like, if you identified as rare whatever that word meant for you I was there for it and I was going to always lead with kindness and that I didn't care what level of kindness, like other people thought it was like my level of kindness and it was you. You know one that I'm not going to pass judgment. I'm not going to pretend I know your struggle. I'm just going to see how I can show up for you, because who am I to judge your battle or what your perception of your experience is?

Kristine: 17:21

You know, and I think we do that a lot in this community and I really try to set the example that you know you can't like judging anybody else's experience based on yours is only robbing two people of their experience, first of all, and second, it doesn't matter what you think of somebody's experience, like their pain is real, their pain is valid and you have no right to try to, you know, invalidate that or try to come up with a solution for it. Which is one of my big things is, I think there's so many empathy misses that happen because we are so uncomfortable or we don't know what to say, or, you know, we don't just know how to be. Like, how can I show up for you? You know, like it's that simple. You know you don't have to fix everything that someone brings to you and you don't have to also internalize somebody else's struggle doesn't have nothing to do with your own.

Jen: 19:20

Yeah, absolutely so. I know we all have a different way that we deal with the concern for others, so I know for me, if I don't know what to say, I'm going to send you a heart and a spoon and I'm going to write the word hugs, because to me, that's the best way I can show up for you and make you feel heard, without trying to be like well, have you tried this or how about you? Do this? Because I don't want you to feel like I'm putting you down in any way. I just want you to feel loved. So to me, that's the easy way to do it. What?

Kristine: 19:51

do you do? I say my go-to thing is how can I show up for you, Um, and how can I? Or how can I help, Uh, how can I? Um? I think those are probably my go-to kind of questions. I think that it's my job to show up for you, but I'm the way you need me to. You know, have 101 remedies or 101 therapy hacks that are great, but you know what it's about you and what you need, and I think the hardest part for people is just showing up and being there for someone the way they need you to be there, not the way that you want to be there for them.

Jen: 20:25

Yes, and it's okay for us to wait for them to ask us, for us to wait for them to ask us. So if they ask what is this gadget you recommend, what is this lotion you recommend, or whatever it is, then we can start jumping in and being like okay, okay, I've got all these links, I've got all these things, I can tell you. But unless we're being asked, I don't feel comfortable just being like, okay, we'll do this and this and this because people did it to me and I think that's kind of how you're feeling too.

Kristine: 20:54

A hundred percent, you know, I think I think people think that there's a choice right, like there's a choice between doing the yoga or not doing the yoga. There's a choice between there's so much that's like mindset right and mental health-based. Which is something that took me a really long time to understand was how much my mental health played in this, because once I stopped needing like a doctor to validate my experience, I was able to really see just how much worse I was making it for myself, be it my mental health. My mental health just got so bad. You know my OCD just a whole new level.

Kristine: 21:28

You know the depression I say, like you know, if I'm in a flare for in a flare for seven days, I pretty much can pinpoint the day that it goes from flare to depression or anxiety in which I don't want to get out of bed because my phone will have 800 notifications or I just missed four days of life. How am I ever going to come back and rebound from this and do all the things I have to do? I'm very task oriented and so there's so much, like I say, mental warfare. When your body betrays you, that happens, and if you don't work on that, not only are you hurting yourself, but I think that's like when you see a lot of the toxic things come out in our community, which is why I've for so long I tried to not bring being a therapist into my platforms or to my brand, because I never wanted anyone to think I knew what that like. I was in the line and the trenches and I stand by the fact that I am. But I'm trying to bring a little bit more of like the full journey that I've been on and into it, because it is a huge part of who I am and you know whether I'm in the seat as a therapist or as a, you know, a client to my therapist.

Kristine: 22:39

It's a huge part that we don't talk about and I think part of the reason we don't talk about it is because we get gaslit so often that like it's in our head or you know it's just like something we can do, but it's not. It's not like it's not in our control, but I call it like the 10%. The 10% are in our control and taking back that power to be like okay, when I journal, I feel better, when I am on top of my emotions, I feel better. When I am eating correctly and walking I feel better. That doesn't take away from anything else I'm experiencing, but those 10% do add up and that was, I think, one of the hardest lessons for me was figuring out that there was not going to be a magic pill that gave me Christine back, that gave me who I was back. It was going to be, you know, an everyday fight for like these 10%, to get as close as I could get to not even the old Christine, just this version of Christine that functions.

Jen: 23:31

Yeah, okay. So my next question for you is what all does rare encompass? Is it just clothing? I mean, I know the answer, but I want you to tell what all is rare.

Kristine: 23:44

No, it is not just clothing, it is essentially, it's an apparel. I call it an apparel and accessory brand with a purpose. Just start the conversation. So, whether it be a sticker, a mug, a custom item, a t-shirt, a piece of jewelry, I have narrowed it down a little bit and started to niche down a little bit, but it was really just my way of expressing and it was things that I found funny or punny, you know, things that I couldn't get out verbally but I wanted people to know. So, like you know, there's a whole dad hat series. That's like petty, because like I just felt like everyone around me was being so petty, or like humble perspective. So it was kind of just like my way of interacting with the world, my way of expression, and it saved my life. I can honestly say that it saved my life. Just having something to pour myself into when I had nothing of myself left was life-saving. What are your?

Jen: 24:43

three favorite things that you offer in your shop.

Kristine: 24:48

Ooh Okay. So I would say I always love like whatever, like random tea, like I've come up with, like that's. I'll always like save the third spot, probably for like a routine design, like I have a really cute one now that says like you're not you when you're anxious or you know something. That like is very in the moment for me. That brings me some sort of like comfort by wearing. But I would say the whole greater than project. So it's like greater than sign with a rare underneath. It is probably absolute favorite. I love the greater than. I love the logo of that. I think it, love that you can swap it out to put whatever you need in there. I love the pins, because the pin, the pin cards, like have that like affirmation thing for you to write it in. I love the whole project and how that exploded. So I would say that's probably like my number one favorite thing, and this is hard, I know right?

Jen: 25:43

Oh, if you want time to think, I can tell you mine.

Kristine: 25:48

Yeah, please, I'm like, wow, Like, what do I even sell? Do I sell anything?

Jen: 25:51

I'm not sure, my gosh. Well, I, you know. So I want to give away, and so, for those of you that don't know, I won this giveaway and, oh my gosh, you sent me like the biggest box of magical spoiling fun. And my favorite thing was the sweatshirt with the zebra on it. It's my favorite. And now, of course, it's summer, and so I'm like, oh my gosh, no, I can't wear it, it's too warm.

Jen: 26:13

And I'm like, okay, I can't wait for it to cool off again so I can wear it again. It's just so cute and it fits perfectly.

Kristine: 26:21

You were right, you didn't give me that little bit of time. And when you said sweatshirt, I was like duh. Christine, I would say the thing I'm definitely proudest of, and would be my number two, would be the accessible sweatshirt. So right around the time when I was starting IVIG, my aunt was diagnosed with cancer and so we were kind of going through treatment together and it's just such a degrading experience Like Velcro drives me nuts, the smell of hospital I can literally barf Like I cannot handle, and also like I've always struggled with like body image, so like the whole whole picking your arm and putting it underneath things so that just the perfect roll comes out, no matter how skinny you are, can send me into a nightmare. So I really wanted to design something that again, was going to be personal, that impactful, and so designing that every thread of the treatment accessible sweatshirt is probably something I'm most proud of, and so designing that every thread of the treatment accessible sweatshirt is probably something I'm most proud of.

Kristine: 27:15

The trademark on that, uh, the patent on that, and just while not excited about the marketing efforts I put behind that, the whole creation process as per usual. Um, you know again now you see so many of them, but at the time there was nothing like that, yeah, and so I love how chic it is, I love how simple it is. You know it's embroidered, rare on the cuff, it's comfortable. So I will say, probably those would be like my top three, even though I know I kind of copped out on the third. But depending on the era I'm in, I can you know it would be the graphic tee that goes in number three. But depending on the era I'm in, I can you know it would be the graphic tee that goes in number three.

Jen: 27:53

Yeah, and I think that's kind of how we all are, right? You know, we all kind of go in waves of what is our favorite, and it might be seasonally, it might be what's going on in our lives, and then we have that one thing we always go back to. It's a staple. And I have to say, what I also love about the shirts that I got from you is they're not made for twigs, you know. They're made for women. They are made for people like us that have the curves and have maybe some roles or whatever. It's comfortable, it fits right, it's not overly boxy, but it's not going to be so tight on my body that I feel like I can't be seen.

Kristine: 28:29

You know, and something that's really important to me is size inclusivity. You know, extra, extra small, uh, all the way through like five X, uh. One of the most frustrating things, I think for me is, like you know, your body type being like causing you to have to pay more. I just feel like it's like a. It's one of those microaggressions that again just remind you how like unworthy you are or how you know, just a reminder like if you weren't this size, like this would be like I don't know. I feel like it's like that subconscious thing. So it's really important to me that not only can you get every size that you know from the full spectrum, but you're not going to get charged more. I'll take on that cost, um, because that's really important for me, that people feel seen, comfortable Again, clothes that have a purpose behind them, fashion that matters. You should feel good in what you're wearing. We feel crappy in our bodies every day. I don't want to do that with the clothes that I put out, so that's really, really important to me.

Jen: 29:29

And you should be able to find the sizes you want. I recently I was trying to buy a t-shirt for my husband at the airport and I couldn't find his size. It's frustrating. The biggest size they have in the airport is a 2X and it's 100% cotton, so it's going to shrink and my husband right now, in anything 100% cotton, needs a three.

Jen: 29:48

It's just reality and I was flabbergasted and I called him and I'm like I really wanted to get you a t-shirt, but I can't find one anywhere, and so well I'm not bringing you anything back from Colorado.

Kristine: 30:00

Yeah, and, like I said, I just I feel like you know, there's so many small decisions that we make as creators, as brands, that you know people overlook, and for me they're really important. You know, that's where the shop with purpose came from, because I knew I wanted to give money back to, you know, the research and the moving forward Cause I was not going to be someone. This was my way of giving, like being in this community. I knew I was not going to be lobbying, I knew I wasn't going to be conferencing you know I do a little bit more of that now, but still like and I wanted their. So I wanted to donate. And then I originally was donating to like a few places and I was like, well, that's really like a whole brand based on like your voice. So that's where Shop With Purpose actually came from was I realized that if I wanted to give people a voice and allow them you know the whole brand be about lifting other people and their voices up I needed to allow them to choose where that 15% went.

Kristine: 31:00

So that's where Shop your Purpose came from, which is, you know, there's a few ways you can get your organization on there, whether it be nominating or leaving it in the notes, but every time I just kind of keep adding these things, these organizations, and you know, at the end you choose where you want that 15% to go and if someone doesn't choose to choose, it gets split up. The 15% gets split up. So we're constantly giving 15% of every order to the research and development of rare diseases, and sometimes I'll put families in there, depending on how people get nominated. But it was really important to me that small detail that it wasn't me being like this is what I think is really important. So this is where your 15% is going to go. It's your choice. You're shopping, this is your thing. So where do you want it to go? What's important to you? Because it's important to me if it's important to you.

Jen: 31:55

That's incredible. I didn't even know that was an option. See, I'm learning new things all the time, thanks to you. Okay, so we've talked about rare. Uh, we've talked about you as a person. Tell us a little bit more about Cabana.

Kristine: 32:10

Okay, so, um, uh. So I had a mental wellness at Cabana things that, again, I could have never seen happening in my life. Another gift, honestly, from rare, because it was not even my clinical skill set although I'm sure they appreciate that too, but it was all the skills I learned from rare. That, really, kind of like, made my application stand out, and so it's a mental health tech company. Um is trying to expand access to different populations for mental health in the form of moderated support groups.

Kristine: 32:43

The founder's story, though, is all based on shared experience, which obviously is something that's very close to me. So when I was on board and then stuff, I immediately saw that like, oh my God, this is like exactly what our community needs. You know a space where you can. You know a space where you can, you know, show up, get some support on your time, without the expense, I guess, first of all, and the judgment, like, of certain aspects of therapy, I mean, unfortunately, for as far as we come, we haven't come that far, and so the platform, what I do there is I'm in head of all the clinical content, all the so, like any of the group content, the content, content, content is all I can say, all the content on there is like under my department. And so, you know, I, early on, you know, had been trying to kind of pitch like, hey, I want us to like consider this community. I want us to, you know, try to make an impact in this way, and they know it's really important to me as well. Community, I want us to, you know, try to make an impact in this way, and they know it's really important to me as well. And so recently, this rare disease day, actually, they were like, okay, you have the green light, like you can bring on a beta of you know rare disease community and we're going to write a white paper and we're going to try to get it approved by, you know, insurances, so that it wouldn't be an expense to the rare disease community because it's access, right. And then there, so like, the tech part takes care of access, but then there's like the payment aspect of it, right, and who's paying for it. And that's constantly what I hear.

Kristine: 34:09

And for me, one of the reasons that what's different right between like a social media and like a cabana is, yes, there's Reddit, there's there's clubhouse, there's you know, all these different spaces, but at times, depending on who's running them or who's not? You know running them. They can be very toxic and how do we ensure that we're not perpetuating right More pain in our community? We're already all struggling, you know, I don't. I don't want to do that and that's one of the reasons why I really stopped showing up on Clubhouse is because I felt like if I had someone moderating for me, it was like going all haywire and I was getting text messages left and right and I couldn't be everywhere all the time and deal with my stuff. And so the idea of this being, like you know, moderated by a mental health professional in like a little bit of a safer space and you know I we have some plans to also, you know, not just mental health professionals but also, like spoonies and you know, some other fun things coming down the pike, but some other fun things coming down the pike but I really just wanted to give, I guess, the access in a safe way that I feel like I would have benefited from had I maybe taken my mental health a little bit more seriously earlier in my journey.

Kristine: 35:32

First of all and second of all, I was very fortunate I say this all the time I was able to work all the way through. I stopped working February of 2020. March 2020 is when everything went virtual. I was, at the time, working at an elementary school, a therapist. I went one month being fun, employed or unemployed, whatever we're calling it these days but, and so I've been like, and then, and then the world went sideways, yes, and, and you know, everything became accessible to us and so so I've been fortunate enough where, like I, could pay a $250 therapist bill, like I, I was able to do that. I know my responsibility, like that's a blessing, and but not everyone's able to do that, and I can tell you I wasn't. Probably a good. Six months of that was just a waste of money because I was such a like nightmare of a client, because I wasn't truly ready yet to do that hard work.

Kristine: 36:32

So a platform, I think, like a baton, would have given me that shared experience, would have given me a little bit of taste of some mental health stuff, a vibe check here. It would have been an approachable way for me to, I think, start to approach these topics that I needed to figure out for myself, because I say to everyone, the greatest gift you can give yourself is understanding your internal landscape. Right, Like to have no internal blind spots, to truly accept every aspect of where you are. Internal blind spots, to truly accept every aspect of where you are. You know, giving yourself that peace and contentment is so powerful.

Kristine: 37:06

And I think, especially as Sunnis, we have to live in balance, like living on any extreme is so bad for our bodies, right, like they'll flare, you know it's. It doesn't matter if you're having the best time at a wedding and then you're down for three days or you're sobbing. You know, and you've gotten yourself so stressed out about your taxes Like we have to live in this balance. And so, you know, through my work there, I've been really trying to, you know, not only advocate for mental health in the chronic illness community, promote it, but do one better and and provide access. So, so that's my day job.

Jen: 37:40

I just love everything that you're doing. My big question for you is do you have people helping you With Rare? Do you have a team of people that help you? Are you designing and printing and doing all the things all by yourself? How does that work? And same with Cabana.

Kristine: 37:56

Well, so at Cabana it's a startup, so I've kind of just inserted the RARE community into that startup, and they've been gracious enough, I think, to see what it means to me and find me valuable enough to then take this on For RARE. I mean, I've had interns, I've had a team before. They're all so wonderful. It's always been really important to me to employ people that are within our community, and with that, though, for me, comes a certain level of grace and understanding that you know life's going to happen, and I'm so appreciative of everybody who has built and, you know, helped me build this.

Kristine: 38:34

I wish that, of course, right, like I always wish, it's making more money, so I can, you know, reimburse in more than clothes, but right now it is just myself back at Rare. But I mean, that is a very short picture of you know so many people who have, like, made an imprint on on the brand and you know if you're on their website. I kind of shot them all out because again, they'll, they'll always be a part of this. I've really wanted to create Rare as a space where it's like the first thing you kind of hit when you're getting into this community, but you can go and do your own thing and go off into the rare disease world or the chronic illness world, kind of leave your mark, but also come back if you need to or use it as a resource, and so I try to make sure that everybody knows come as you are, leave when you need to, but always know that you can come back. Love it, I love it.

Jen: 39:24

Okay, so what would be your biggest advice to someone listening right now?

Kristine: 39:30

You don't need anybody to validate your experience but yourself. Give yourself permission to believe yourself. But yourself, give yourself permission to believe yourself. I think sometimes we outsource that in which we're trying to. You know, it's like we want the doctor or we want our parents, we want our significant other to believe us, and that stems most of the time from us not believing us. So, believe yourself, trust that you know your body better than anyone else and you get to define how you respond to your chronic illness. And if you don't want to start an accessory brand, don't. If you don't want to start a platform, don't. Do what brings you peace and where you find comfort, and it's also okay if that changes. That's beautiful.

Jen: 40:16

You're amazing. Thank you for coming on. Thank you for giving us your time. You are such a joy. I feel like I could talk to you for hours.

Kristine: 40:25

No, I really appreciate all the work you've done. I've followed you from very early on. I was like Spoonie Sisters I don't know what this is, but I like the name Catchy and you're such a light and you give. So you know, I see it and I think the rest of the community sees it as well.

Jen: 40:40

Oh, you are so sweet and, you know, kind of like you, I started it because I felt so alone in the beginning of my journey and I never wanted people to feel alone again. And you know, I had found a Spoonie sister with RA that was running a podcast called my Immune System Hates Me, and I was a guest on her podcast. It was so much fun and she was such a joy. But you know, eventually, you know COVID, people started moving on and she was ready to get back to her life and she's a professional dancer in New York city and so it was like she couldn't do it forever and I saw that hole. That was that, that.

Jen: 41:18

And it was like, oh my gosh, we need like a community, we need a place to love and celebrate and support each other. And so I was like my spoony sisters, because you guys are my sisters. I don't care where you are, I don't care who you are, but you are. And so that's kind of why I did what I did too. And so that's kind of why I did what I did too. And I think that's why so many of us easily come together, because we came in with the same kind of purpose.

Kristine: 41:46

Especially coming from you know us millennials who like got chat and it was like ASL age sex location, like your parents telling you absolutely not. And then here we are, just you know, bridging gaps between rare disease and the rest of the world.

Jen: 42:02

Absolutely Well. Where is the best place for people to find and follow you?

Kristine: 42:06

At Find your Rare on all of your favorite platforms. I'm pretty sure I own that domain in like every language, every platform, even if I don't use it. So, find your Rare. You can email me there. Findyourrarecom. Christine at findyourrarecom. Um, but you will. You will always find me on the other end of that find your rare.

Jen: 42:28

There you go, and I'll make sure that we have all the links in the show notes for everyone to get in touch with you. But thank you, it was such a joy and my spoonie sisters, until next time, don't forget your spoon.