Episode 61: It's OK If You're Not OK

Guest: Kristina Sarkisova

Lauren: Welcome Kristina. I'm so glad that you're here.

Kristina: Thanks so much Lauren. I'm really happy to be here.

Lauren: And I would love to hear your overview of what your health's journey has been.

Kristina: Oh, gosh. The complicated question. I was thinking about this earlier. I was thinking... Because I used to be a musician, this is similar to how much musicians hate the question. So what music do you play? Because it's such a complicated loaded question. But yeah, I guess my health issue started, would have been 2014. So nearly six years ago now. And it's been a long and winding road. I've been re-diagnosed a bunch of times. I still don't exactly know if I have the correct diagnosis. I've accepted that it's just an ongoing process. But yeah, I can tell you it's started very... At the time it seemed like it was very, very sudden.

Kristina: In retrospect, it seems very gradual because I had no idea how bad things were going to get. And when you're 23 years old and you lose the ability to exercise as often as you'd want to or you're just dizzy constantly or you get a lot of headaches or just don't have that energy. That seems like the end of the world when you're super used to being completely able-bodied. Of course, fast forward to a couple of years later, the fatigue got a lot worse. My pain levels got a lot worse. I started getting pain all over my body and in my joints. Yeah, so things progressed slowly over time, but at the onset it felt like everything was going wrong at the same time. All these seemingly disparate symptoms, which I now understand was probably caused by Lyme disease.

Kristina: That's my current working diagnosis is, I am dealing with the after effects of Lyme disease, whose diagnosis, having ME for a long time. I have adrenal issues, all sorts of things. You know how it goes. There are so many comorbidities with so many of these chronic illnesses, partly because they're so misunderstood that sometimes they don't even know what the diagnosis is exactly. I may have hypermobility. And currently I'm mostly home bound, so I leave the house maybe once or maximum twice a week usually. And I have full time carers and I work from home. Yeah.

Lauren: So you're in this phase of... How many years has it been now since you first started to explore diagnoses?

Kristina: Six years now. Nearly six. Yeah.

Lauren: So from then till now you've had a few different answers?

Kristina: Yeah.

Lauren: You're also curious, are these even the right diagnosis? And I think that's such a familiar experience for so many people in our community, not knowing is this actually what I have? And it's so wild to not know and to not know if it's... So I'm curious what that's been like for you.

Kristina: I was just thinking and patting to my head. Have you ever heard the show Crazy Ex-girlfriend?

Lauren: Yes. I love it.

Kristina: Oh my God, it's so good. Do you know the song A Diagnosis, it's for her, it's about mental illness, right? But she got so excited about finding out what the thing is so that they can treat it and she can get help and she can be in a community and all the stuff, and I completely understand. Unless you've been in that position, it seems like getting a diagnosis is the really bad thing, but when you already have all the symptoms, you want one, you want an answer for that. So it's actually not a bad thing at all. But initially I thought it has to be one thing and they have to figure it out right now. And I think that went on for a couple of years until I settled into, okay, this is what my life is now, might not be a temporary thing. And now I don't feel like I need an answer per say. I'm going to keep searching, I'm going to keep trying different doctors. I trust the specialists that are taking care of me now, but no one really knows sometimes. And that's okay too.

Lauren: I think there's so many different ways that people feel about not having a diagnosis. And just from what I know of you so far, it makes sense to me that you don't feel as much urgency just because it's something that you don't... We only have so much control, right? And I just see you wanting to do as much as you can with what you do have control over.

Kristina: Exactly. And I know what my symptoms are. I do feel like I'm a part of a community that is incredibly supportive and wonderful, which is the Spoonie Community. And everything else, whether you put one label on it or another, unless that's going to lead to help end treatment, it's not really worth my time. So I'm still pursuing it. Technically my diagnosis is post-Lyme right now, but there's not much to be done at the moment. So I choose not to spend my time dwelling on that all the time.

Lauren: Yeah. And one of the things that I know for you is a salient topic is, your being in the situation of getting your first diagnosis and symptoms and everything in your early 20s, and that as a young person coming to terms with chronic illness. And I would love to hear about your thoughts on that.

Kristina: Well, I can only say that it was intense. It was in retrospective, really traumatic. It just create a complete upheaval in my life. And it also taught me so much. And that's the part that comes in after. You don't even see until... Even a couple years ago, I didn't understand that I had to really grieve. It wasn't until I read this book, I don't know if you've heard of it, it's really, really wonderful. It's called It's Okay That You Are Not Okay. And it's a book about grief and I think a psychologist wrote it as well. She talked about in an interview how grief wasn't only about losing a loved one, it's about losing parts of yourself. It's about losing your health. It's about having to say goodbye to things, to really deal with deep, deep loss.

Kristina: And until I had heard it that way, it hadn't hit me that I really did have to process a lot of things and I had to grieve a lot of things. And for a long time, especially being 23 which is an age where you're still figuring a lot of things out, I know I was at least. And I just tried to pretend that things were as okay as they possibly could be and just push myself for a really long time. So I just wanted to be normal, whatever that is, of course.

Lauren: Whatever that is. But I think that's part of the task of our 20s is figuring out who we are and where we fit in and how we want to be in the world. So it makes a lot of sense that we're just trying to keep on going, and seeing, what can I do? How can I show up in the world? So what I'm hearing you say too is that in that process of upheaval, it sounds like it was very scary and certainly interrupted the keep going part of life. And then you got to this point of realizing, “Oh wait, maybe I need to look at grief as an important part of this journey.”

Kristina: Yeah, definitely. I think I hesitate to say this, but then on the other end, it is really, really true. I don't think most of us really consider what it's like for people who are chronically and disabled until you have really close experience with it yourself. And that's totally natural, and I'm so grateful that my eyes have been opened, it's allowed me to see so much more of the world than I did before and have so much more compassion and empathy for people going through all kinds of things, not just this. But before you've had an experience like this, it seems like the end of the world. Like getting sick or being disabled is the worst thing that could happen to you. There's so much stigma in our society around that.

Kristina: And so I think for me, especially when it got to the point, this was about two and a half or so years ago or two years ago, I forget. But I started getting pains in my legs very suddenly, it felt like almost overnight. And at this point, I was living on a third floor that didn't have an elevator. And so it got to a point where I could barely leave the house because of the stairs. My boyfriend at the time would carry me up and down the stairs and I still refused to... Just saying the word disabled felt like some sort of defeat because I knew that that's how my family would see it and some of my friends perhaps and society. And for all the downsides there are to having an invisible illness, which there are so many, and that was where I struggled with for a couple of years there at the start.

Kristina: There's also a lot of downsides to having a physical illness and that being a part of identity that's on display the whole time and total strangers know that you have health issues and can wonder about them and ask you personal questions about them. And I was just not ready to accept that I needed a mobility aid and when I finally conceded that I needed a wheelchair, it just felt like this really, really huge dramatic, horrible thing. And in retrospect now, of course that was part of the process for me, but in retrospect right now I love my wheelchair. It lets me do things that I otherwise couldn't, it's lets me go on strolls or walks or whatever you'd call them. I'm able to go see my doctor in Brussels because I can use my wheelchair to travel. So it's just another tool, and I really wish that the same way that we're starting to educate people about diversity in other areas, we do that with illness and disability as well. That was a really long answer, and I went in all sorts of directions that you didn't ask me to and I am so sorry.

Lauren: I'm just laughing because your laughter is contagious, but I think that was such a helpful description of what some of your... And I know this is also just like a snapshot because there's so much more, but your description of... First off, you were in a place of fear, around what it would even mean to identify as having a disability. And that totally connects with why you want there to be more education and visibility. Because if we think about all the people who don't currently identify or even think about identifying as having a disability, those people could someday down the line get the news or get information from their bodies that something has changed. And because-

Kristina: And it's inevitably happening to all of us and they're afraid.

Lauren: Exactly. Well, yes. And because of the way that we have created this cultural story, many stories, but overall a certain vibe around what it means to be chronically ill or to have a disability, it really sends the message to all of us that it's the end of the world.

Kristina: Yeah. You're losing your life essentially. Yeah.

Lauren: Yeah. And then we go to the moment for you of, okay, can't get down the stairs on my own, boyfriend needs to carry me, but I still don't want to identify as having a disability. I can totally make sense of that. You're talking about, what could we replace disability with? Like I don't want to have my life be over.

Kristina: Yeah, pretty much. Yeah. I had to drop out of Uni at the same time because I had gone back to university a couple of years prior to that and I thought about part-time, but I just couldn't handle it at all. And I had at the time not a helpful doctor who suggested that... He said that it was post-viral fatigue syndrome. And that I had to do was to rest for a year. All I had to do. Like that's so small. And I asked him, “What does that even mean?” And he essentially just made me feel really bad for trying to have any normal life and said that I should just try to exert myself as little as possible for a year. So I dropped out of Uni, and tried to rest for a year and nearly lost my mind in the process. And also physically, that's when I deteriorated the most. So I don't actually think it was helpful for me.

Lauren: That wasn't what you needed.

Kristina: Yeah. It was a lot of loss at the same time and a lot of conceding to something that I didn't want to concede to. I had plans for my life and that was not what it was going to be like.

Lauren: So a huge shift and I'm so sorry that you got information that wasn't what you needed and it impacted your life in such a huge way. I mean, a year of going from being out in the world and to some extent being able to even though there's certainly hindrance, but going from that to being told to essentially, be on bed rest for a year, it is such a huge shift, especially when there was something in you that was saying, “That doesn't quite fit for me. That doesn't quite feel right.”

Kristina: Yeah. But I was so desperate at this point, I was willing to try anything. Especially a doctor is supposed to know better. Supposed to be a specialist in my condition tells me to do that, I'm going to give it a shot. But yeah, it's okay. It was a couple of years ago now, and I managed to find other sources of meaning in my life, thankfully, even though I didn't become a music producer, which is what I was planning for my life at the time.

Lauren: So can we talk a little bit about music and being a musician?

Kristina: Yeah, sure. It's so strange when there's something you don't practice, it doesn't feel like you have the right to call yourself a musician almost, it's a skill that feels so rusty to me now. And I'm sitting in a room with all my old guitars and equipment by the way, which were all packed away. But yeah, it took me a while to figure out what I wanted to do. I initially, funny enough came to... Because I grew up in Spain and then I moved to London when I was 17 and it was to go to university and I studied psychology but then I realized it wasn't for me at least not at the time. And I first tried to get into music business because I had worked at a record label and music had always been my passion. I'd always written.

Kristina: Then after doing the business side of it, I saw that you didn't have to be a pop star to make music. I saw friends just performing at open mics and figuring things out for themselves. And I was like, “Oh wait, maybe I could do this.” So at this point I was in New York but I couldn't stay because of visa issues. And so I came back here to London to try to be a musician here. And I had a band and I was working and supporting myself for the first time in my life, when I was 21 or something like that, I'd been studying up until then with the support of my parents. So I got this brief window of seeing what it was like to work and be an adult and do things for myself, but not necessarily what had been planned out for my life. And it was really the time. And then I got sick. So, I got abruptly interrupted.

Lauren: It really did.

Kristina: Yeah. I had to figure out a different path.

Lauren: What's so neat is that I got a chance to listen to your music and watch a video. Actually a few of them because I saw that you're channeling with a few different...

Kristina: Oh God.

Lauren: And you just have such a lovely style and voice and your guitar pairs with your voice so beautifully. And so I know that what you just said is you feel weird calling yourself a musician currently because it's not something you're actively engaging in. And then for me as an outsider, I'm like, yeah, and it's still in the world, beautiful music that you made. So it's both.

Kristina: Yeah, I suppose so. Yeah. I really do hope I can get back to it at some point.

Lauren: I hope so too, selfishly, because I think it would be nice to have even more.

Kristina: That is very kind. Thank you.

Lauren: If and when the time feels right. But I also believe that life happens in different phases and seasons, and sometimes there are things we really love that we don't do for a while, and it doesn't mean that we don't love them, it just means that we're not doing them. And sometimes things shift and sometimes we get back into it or not.

Kristina: For sure.

Lauren: I have some things like water coloring, there were some periods where I would just paint almost every day. And I haven't painted in months, and every day I'm like, “Why didn't I paint today? Why didn't I paint?” Well, that's just the way of it for now, I'm doing other things.

Kristina: And then maybe one day you'll just pick up the brush and it will feel natural.

Lauren: Yeah. Maybe, and maybe I'll pick it up and it'll feel awkward.

Kristina: That too, yeah.

Lauren: And that's okay too. It's all just part of this longer ebb and flow.

Kristina: Yeah. Absolutely.

Lauren: When you were talking about being at the beginning phase of understanding what was going on with your body and the fear that came up for you around identifying that the label of disability. I wonder if you could go back in time as the current you and go back and visit the you from that time. What you might tell her, what she might need to hear from you, or what you'd really want her to know?

Kristina: Oh, that's a really good question. Trouble is, I am very stubborn so I don't think there's anything I could have told me at that point. I have always been a wonderful at convincing myself of anything, like I can make a really solid argument for and against the same topic and excel. So, I don't know. I think in my case I just had to go through the motions and go through the loss and go through some really, really difficult things and hit bottom in order to really realize what was important and what I had and hadn't lost, and what about myself still remained true. I think the one thing that I inadvertently said to myself years ago is I have this tattoo on my wrist that says, “This too shall pass.” And funnily enough I got it right before I first got sick.

Lauren: Wow.

Kristina: I didn't get it for any specific reason, anticipating anything or anything like that or because of a breakup or anything dramatic like that. It's a phrase that I had always, always loved and it had to do with a story that my dad used to tell us when we were kids. And I always knew I wanted to get that tattoo. So I think maybe subconsciously this was my future me, sending my younger me a message saying this does get better.

Lauren: That's beautiful. And it's true. This too shall pass is true of pretty much everything because everything ends, everything changes. It's wild.

Kristina: Yeah. Good and bad. People think it's like a reminder that bad times will end and it's not just that, it's about how finite everything is and how... Even in that moment when you're on a high, it's sometimes important to contextualize it and know that's not going to be every day. If your expectation is to be jumping for joy every day, then your expectations are going to take a hit. So yeah, it goes both ways.

Lauren: I like that you got it before all of this because it helped to give the perspective that it's not just about one thing. In fact, it's so neat that when you got it it wasn't for one thing, it was just the essence of a phrase that resonates for you. And it got to be a little piece of what carried you through, though like you said, you needed to go through the difficult, meeting the bottom. Hitting the bottom so that you could bounce back up or begin to come back up.

Kristina: It's just really annoying the way life works isn't it? It would be great to be able to save the people we love a lot of grief and tell them what we want them to know. But you have to experience it yourself and it's really funny actually, I think I started listening to your podcast right around the time it first came out, and I remember being so excited to... I think I just looked within podcast and chronic illness and I was so excited that this existed. I was like, “Oh my God.” I felt seen and represented and it was wonderful. And then I started listening to your first couple of episodes and everyone seemed so together and like they'd come to terms with this huge life changing experience. I was like, “Why am I not like them?”

Lauren: “Why haven't I come to terms with it?” I thought it comes wrapped up in a bow.

Kristina: Yeah. I was not at the point. And it's not like that's what people say. Like no one was saying, “Oh, this has been easy.” Or it's wrapped up in a bow. Like people were talking about really difficult experiences, but it seemed to come more at a time when they'd already reflected on it much like I am right now, which is hilarious to me now. So anyways but yeah, when I was first listening to it, I was in the stage where I was just angry at the world. And no matter how much wisdom I was actively seeking from yourself, from spiritual teachers, from therapy, from all these sources, I really just had to feel the pain. And I was so terrified of going there that I postponed that for as long as I possibly could.

Lauren: Oh. What you just said is just so important because the truth is, it's not fun to feel the pain. And I know that that's a really simplistic thing to say, but it's true. It is so true. I mean, even if you just think about like anyone who's ever been into a cold body of water or like a pool, you know you'll be okay, but that first part of just your whole body is submerged in this cold water is a shock and it's terrible and eventually become one with the water and you figure out how to tread the water and all of that and maybe even start to have fun. But it takes this period of feeling, really feeling. And my analogy probably only lasts a minute or two, but feeling pain of grief, we don't know, that's part of what's scary about it. We don't know how long it will be hard. We don't know how long it will hurt, or when it will ease up and then maybe go back in because that's part of it too.

Lauren: But that you experienced even with all... Surrounded by stuff that was great for you, resources, people, that you still needed to live this life curriculum, that you still needed to take this next step for yourself, which was to feel the challenging feelings. And I think probably a lot of people need to hear that today. Like listening to this, it's probably bringing a little bit of relief, ease to people who need to hear it.

Kristina: I guess I just want people to know that, whoever sounds like they do have it together and they're in a good place with it. First of all, that's not a guarantee for life. That is active work that you're doing. And second it comes with time and a lot of work. It's not that you can't do it or you haven't been able to do it or something. It's just a lot of work.

Lauren: Totally. I want to share a little recent thing that happened for me, which just that I was on my way to a medical appointment and it was for a procedure that wasn't... An uncomfortable procedure and I was super scared about it and I could feel that little kid inside me. When I was a really little kid and I had to go get an inoculation, get a flu shot or whatever. How I dealt with it because I was so afraid to get the injection was, right before they gave it to me, I'd say, “Oh, I need to go to the bathroom.”

Kristina: Were you trying to escape?

Lauren: And then some time would go by and then my mom and maybe the doctor would knock and be like, “Lauren, you've been in there for a while.” Like I didn't want it. I mean obviously I made it out. I'm here. I made it into adulthood. But it just brought me back to that little kid time when I was just afraid of pain. I just was afraid to experience pain. And so the day that I had this procedure, the night before, I was talking my partner about I just was anxious and scared and there was this part of me that felt like I wasn't supposed to be anxious and scared because maybe if I'm this evolved person, then I won't... Even though I say all the time on the podcast, we have to feel our feelings in the moment. It doesn't feel like that. In the moment it feels like there's something with me if I'm scared or if I'm not feeling like this peaceful floating on a Lotus flower calm ease, right?

Kristina: And I think that's really encouraging for people to hear because people tend to think that therapists have it all figured out and the truth is you have the tools, it doesn't mean you're going to be perfect at using them ever, right? Everyone goes through these things.

Lauren: Yeah, it's so true. And I even teach tools that I get, but then when I use them more and more, I get them even more. I understand them even more. So like the tool of being a kind friend to yourself and being loving and not trying to force yourself to feel something else. So I used that. So the day of the appointment I used it by just saying to my partner like, “Hey, I'm going to let myself be sad, crabby, scared. I'm just going to let myself be those things. And I just want that because I'm not going to be trying to pull myself out of it. I'm just going to just be sad and pouty.” I don't want to be going. So I let myself do that.

Lauren: It was mostly internally just to let myself feel it. And then I made it through the procedure and then I came out and then I saw my partner and I just had these tears of gratitude, which were, “Oh my gosh, I loved myself through this." My partner led me through it too. Because letting me feel my feelings is an act of love. And I just got to feel like I'm so proud of myself for feeling scared and letting myself feel scared and now I'm okay and I feel like I didn't abandon myself.

Kristina: Yeah. Oh my God. No, that's huge. Absolutely. Of course, you should feel proud. And it's so wonderful what you said to your partner as well, because it's really hard dealing with all these feelings around chronic illness, especially in relationships I found. And it's really hard to convey what you're going through, but being really forthcoming about how you feel and what you need can go such a long way.

Lauren: That's true.

Kristina: I have felt so scared in so many situations. Sometimes it's just leaving the house because I have to factor in so many things and bring so many things with me and have contingency scenarios and stuff. And I'm much better at it now, but I used to get so, so hyper anxious and I feel like if something wasn't in the right place or someone didn't notice that I needed help or something, I just snapped at them because I was such a live wire, and yeah, I've learned how to not do that thing for me anymore. I was just able to say, “Hey, I'm going to be really anxious, this is hard for me. So if you could just give me like a little bit of room and just understand. And I will I apologize if I'm rude. As soon as this is over I promise." Funny thing is, no one who loves you minds. Everyone gets it.

Lauren: It's true. And we are so multifaceted. There are different parts of us. You have the part of you that is the... We're going to talk about this in a little bit, but you lead a business, right? And then you also have the part of you that gets crabby and you've got like all the different elements. Like we have our mature polished parts, we have our work in progress parts, and to be able to feel, I think of it as the little kid part that needs to be crabby or it needs to be scared because that part of us is just as real as all the other parts and it's not all of us, but it is an element of who we are.

Kristina: It's expressing that really primal emotion, isn't it? Because I guess you let things fester, they just metastasize into worse things, it's passive aggressiveness and the snapping and resentments and all these other things.

Lauren: Yeah. And I think sometimes we don't know why we're getting that way and sometimes it takes a while to figure out, oh, maybe I wasn't letting myself feel authentically the way that I actually felt in that moment. And then I became resentful or I became sassy or whatever to the people that I love.

Kristina: Yeah. That's where I've been very fortunate to have been able to do therapy around this because that's where mindfulness has really come in handy for me. Also, because I also have borderline personality disorder and so whereas I consider myself recovered, it's a tendency that I'm always going to have. And so yeah, I feel things very intensely, and if I don't understand what's happening and especially if feeling anxious or threatened, I would have these overblown reactions, and whereas now I'm able to see these things happening inside of me and I'm like, “Oh, that annoyed me. Did that make sense that that annoyed me? Why am I having this reaction?” And I just have a little chat with myself and then I'm like, “What is underneath this? What am I feeling it, where on my body in my feeling it?” And then, exactly what you were saying, I try to be kind to myself. And of all the things I've done in therapy for various things over the years. If I could say one thing, being kind to yourself, the most helpful of them all.

Lauren: Yes. And being kind to ourselves is like the one... If I could write an emotional prescription to everyone in the world that fits all diagnoses or all situations in life, it would be that. It would be, be as loving as you can be to yourself and then be even more loving. Be more loving than you even think you deserve, because that's probably getting closer to what you actually do deserve.

Kristina: Yeah. Or the whole talk to yourself like you would a friend or like someone you love thing. Sometimes you can't even imagine what it's like to be kind to yourself when you start out and imagining all what will you see if a friend told you this problem, you wouldn't be like, “Oh you're so dumb to even think that.” You won't say that to your friend. And you'd be like, “Oh my God, that's okay.”

Lauren: Yeah, totally. I just think it's so cool that you are sharing this part of your process because I think this is part of maybe what the you from back then would have loved to hear as well, is like, “Oh my gosh. So how does Kristina and how does Lauren work through those hard moments?”

Kristina: Yeah, exactly.

Lauren: And so it depends on the moment because I'm sure we could each tell dozens of stories, but you're giving behind the scenes look at some of the harder parts. And I love that you talked about snapping at people because that is something that actually doesn't come up as much in these interviews. I think sometimes [crosstalk 00:33:33] I think about, like, “Oh right, yeah, sometimes I can be a jerk to the people in my life or whatever.” Which I can truly. I then have to apologize. But because we don't talk about it, I think it stigmatizes the idea like, oh well, if you're mean sometimes that means you're a bad person. And it's, well actually most of us are human and humans have a hard... If you think about even a long car ride, you're on a road trip, usually at some point on that road trip, the people on the road trip are going to be a little bit-

Kristina: Annoyed at each other.

Lauren: They're going to be a little crunchy, and so that's good. And something that also does come up a lot with relationships, whether it's partnership or close people in your life who are care partners or whoever, when the people that are actually taking care of us the most, we can get really sassy with them.

Kristina: Yeah. They got the worst of it, don't they?

Lauren: Yes. And I say we because I don't think you and I are the only ones.

Kristina: No. I don't think so at all. I mean, I just think back to being in relationships when I was already struggling with my health and I'd be used to all this discomfort and sometimes pain and fatigue and all these things, and then my boyfriend would come down with a cold and it would seem like the end of the world to him. And I bring that up just because it's really funny. I think we really, really block out the memory of what it feels like to be physically unwell. If you had a migraine yesterday, you don't usually have migraines, but you had a migraine yesterday, then you're like, “Oh my God, migraines are the worst thing ever.” And I viscerally vividly remember that and I can really empathize with the fact that you have a migraine, but I feel like no one really wants to hang onto that memory after it's been a while.

Kristina: So even people who have had illness in their life, if it was a long time ago or if it wasn't chronic illness, a lot of people just want to put that away in a box. And so it's a really a testing experience to be that vulnerable around anyone, that you constantly need help, and often that is what illness is. Before this, I was terrible at asking for help. It was like my most dreaded thing, and I have had to become really, really good at it. And not just good at it, but really comfortable with it. But initially, I think that powerlessness will make everyone edgy and uncomfortable as they're getting used to it. Not everyone is this perfect patient that just radiates maturity and understanding. I think that's the rare exception.

Lauren: Yeah. But what you've just said is so clear, which is this vulnerability that comes from experiencing powerlessness. Well, creates all kinds of responses. We're getting used to something that we don't want to get used to.

Kristina: Absolutely. Yeah. And if you identify as really independent, do it yourself person, which I did, oh my God, that's your worst nightmare. You feel so exposed and you feel like you're not you anymore. And of course it's about figuring out, well maybe that's not all I am, maybe what I am is something deeper and more permanent than this, or at least it was for me. But yeah, it's not easy and I don't think anyone does it perfectly. And if they're pretending to, then they're hiding something.

Lauren: Not really to those people.

Kristina: Do you know Brene Brown?

Lauren: Yes.

Kristina: Her first ever Ted Talk when she was talking about vulnerability and she's talking about, you know those people that come across adversity and they're like, let it in, let's go through the motions and then she goes like, “I'm not even friend with those people.” I always love that so much. I'm like, yeah, maybe some people can do that but the majority of us, it's exactly what she said. It's a street fight.

Lauren: Right? Well, I think that the thing is, there are tools that are really helpful and it's great when we can use them and we can't always use them. And it's just the way it is.

Kristina: When you fail, be easy on yourself and forgive yourself and try again next day.

Lauren: And also what you just said is so perfect, not giving yourself a hard time. I wouldn't even necessarily... I don't know if I believe in failure because we're learning always and that's exactly what you just said, which is, “Okay, well then you try again, then you just do a different way.” And so part of it is the tool of letting it in is this interesting, I think it gives the impression that we're supposed to just be okay with everything versus be willing to feel. And I think-

Kristina: That's such an important distinction.

Lauren: It's okay to even just be willing to feel the fact that I'm not willing right now.

Kristina: Yeah, exactly. You just feel the resistance. Yeah.

Lauren: Right? Just noticing it. And that's what I was doing that for that appointment. I was just like, “I don't want to go to this appointment. I really don't. And I really want to feel fine and I just can't. I can't feel fine right now.” And it's disappointing, but it's also so human and it's part of where we get some of our own hard one lessons. The stuff that you don't even read about in a book because only you can know because you're the one who lives through it. So I'd love to hear a little bit about your business because it is so cool. I've been following you on social media for a while and it's called Spoonie Box. Can you tell me about how it came to be?

Kristina: Yeah, sure. It came to be, probably in my mind about two or three years ago. So I had already been sick for a while and it came from this idea of, I guess at the time as well as I was getting used to what this new life was looking like, and the people in my life found it hard too as well. My family and friends, they didn't really know what to say to me or they'd tried to say something nice but ended up saying all the wrong things. And we know this, it happens to so many spoonies is you know the whole like, but you don't look sick thing. People think they're saying such a nice thing, but it's actually not for so many reasons.

Kristina: Of course, you don't get mad at those people. You love them for even trying. But I didn't see people with chronic illnesses or disabilities represented in many ways, and one of them was to just have like a care box that you could send to someone who is going through this process that could say without so many words. I get it, I see you, I'm here for you. Because sometimes it's these gestures that matter more than words or just, someone's sitting there and holding your hand or whatever. And we live in a consumer society. We need tend to solve our problems by creating businesses, and that's what I ended up doing.

Kristina: And also I was really keen to work again. So yeah, essentially I started this. It was an idea for a really long time and then sometime last year I think I got so incredibly bored of being at home and feeling like I didn't have a purpose. Not just staring at the ceiling when I'm resting at home. I do stuff, I fill my days in any way that I could, that wasn't expending too much energy, but I wanted something to contribute or to actively be a part of again. And so I created this business Spoonie Box and it's an uplifting subscription box service for people with chronic illnesses. It's the subscription box idea, so you have to say that, but you can also buy it as a one off box. And the idea is to have a product that is created by a spoonie and that's exclusively for spoonies.

Kristina: Initially, a lot of people said to me, “Oh, it'll sell better if you make it a self-care concept. Everyone's so into self-care these days.” And initially, you're like, “Oh my God, should I do that?” Is this going to tank? There's no audience for it.” But actually what I wanted to do with something really, really specific because there is so much self-care out there and of course there are self-care elements in the box, but I wanted it to be really targeted to people who don't otherwise see themselves represented a lot. It's exactly the validation that I derived from finding your podcast and being like, “Oh my God, there's a podcast about chronic illness. That's amazing.” And I want someone to be like, “Oh, there's a subscription box just for people like me.” Even just knowing that, I think is important.

Lauren: It is. And I had the feeling that you just described when I came upon your social media account and saw that there is a Spoonie Box for me and all my friends. Well, most of my friends. Most of my friends have some chronic illness. Just to see that that was a real product, and I do love that self-care concept and it is so broad that it's just like everywhere for everyone. And then when we don't have a specific audience it's harder to connect from the heart.

Kristina: Yeah, for sure.

Lauren: And that's what I felt when I saw it. It was like-

Kristina: Makes me so happy. Thank you for telling me that. From the start I knew it, I wanted to include a letter from a fellow spoonie in every box as well. And there's always a note from me explaining why I picked the items that I did, because there's always a lot of thought that goes into product curation and I want absolutely everyone to feel included, and that can be very hard because it's a very diverse audience. So it's never things that are usually very symptom specific or anything like that . But it does contain things that are relevant that other boxes wouldn't have. Like really cute pillbox, which lots of us can use or if I include, most boxes have like an edible or a drinkable, which just means essentially tea when it's drinkable, because it is never going to be actual liquid. But whenever I include something like that, I had for instance, I had a slip box which would have sleepy tea and the pillow mist and a sleep mask and these really lovely earplugs. And it's all usually like really cute things as well because we like it when things are cute.

Kristina: So yeah. Also, I found a few people through Instagram who have amazing businesses for spoonies. And I think part of the idea is, for instance, there's this girl, her handle's Your Grandma's. Yeah. And it stands for not your grandma's mobility aids and she's on a mission to revamp mobility aids and make them really pretty. And I think that's great. I think the fact that we do have these extra needs and that we have to carry around pillboxes or use a hot water bottle a lot or whatever, it doesn't mean that it has to be ugly or boring or whatever. It can still show our personalities. We can still make it a fun element of our lives.

Lauren: It's so true. And it's true of everything else, like even toothbrushes have cool designs. I remember picking out the color of my electric toothbrush and being like, “Oh, this represents my soul. This is the perfect type.” It really was a perfect color for me. But we don't have that cultural same approach around stuff like mobility aids. So, what a cool concept to say yes, this too can be beautiful.

Kristina: Yeah. We're trying to... As you said, a toothbrush meant so much to you. You're looking for ways to represent yourself or ways to communicate with your clothing or make-up or whatever. So why not do that with these things that we need to use so often?

Lauren: Yes. Well, I'm so glad that you did it and I'm grateful that you stuck with your vision, which part of you felt some doubt and hey, that's to me one of the predictable elements on the hero's journey, is we find that there's doubt. I had that with the podcast too. Like, “Maybe I should just do a podcast that's more general.” Same thing and you stuck with it and I stuck with it and now we've got these cool businesses that support people in a very particular way that's needed. So thanks for hanging in there and think you could do it.

Kristina: Thank you.

Lauren: Yeah, and I'm so glad that you are enjoying the podcast and it's pretty neat. What does it mean to you to live a fulfilling life, and has your definition of fulfillment been impacted by your health journey?

Kristina: To that I just say, feeling like you've done your best on any given day and understanding that that may be wildly different from one day to another. And sometimes your best is getting out of bed and barely be nice yourself about that. Sometimes your best will be getting all the to do lists done in one day and that's wonderful, but I think fulfilling to me is not trying to at least not define myself by those external achievements.

Lauren: I love that. And do you think that that definition has been impacted by your health journey?

Kristina: Oh yeah, massively. I was very much on this productivity kick beforehand and I really thought I needed to achieve X, Y, and Z to be a lovable human, to be honest. It's really the express route to figuring out that it's not. You can figure that out through a lot of heartbreak and job changes and all these other things. But I've heard for an addict see this before I actually, that it takes that bottom to really make a person really change their life. And I think that's what chronic illness makes you do, it throws everything into upheaval and then you got to figure out what now? And it's not one of those people that say, “Oh, I'm so thankful for my challenges. It's all been wonderful.” And all of that. They sucked. They were so hard but I have learned from them and I am grateful for that. If it's possible to both not love the horrible thing that happened to you and at the same time love what it's taught you, that's where I'm at.

Lauren: I love that. Your answer is like a healing bomb. If it was in a Spoonie Box, it would be a healing bomb in physical form.

Kristina: I should try and box that somehow.

Lauren: Yeah. Because it's really a good reminder, at least for me, I'll say, a wonderful reminder of you can both not like that you've gone through and are still going through health challenges and be really grateful for how you've partnered with yourself for the journey and how you've shown up for your life. You can do both of those at once and I love that. So thanks for saying it so clearly.

Kristina: Thank you for asking the question.

Lauren: Yeah. So do you have any funny stories from your health journey?

Kristina: Sometimes my wheelchair will just start making this repetitive like creaking noise, so everyone knows you're coming like a mile away, as if you're not calling enough attention to yourself by being a young disabled person, which in our society is such a rarity that everyone feels like they need to stare at you. You're actively going. So it's not very attractive. But I've also been traveling with my wheelchair and like some bolts just came off it as I was using it. And I felt that stink under me and my sister was with me thankfully and we managed to put the screw that had fallen out back in, but it kept falling out so we had to constantly watch out for it.

Lauren: Oh no. You can't even rest knowing that you're safely supported in that moment.

Kristina: I know. Or having to hide from the rain and the most ridiculous rain poncho over walking my dog with the wheelchair and then getting caught in the rain and needing to find the nearest bush because you can't get you poncho out. And then the wind blows and your poncho is in your face and you can't see where you are going.

Lauren: Oh my gosh. It's so funny because those moments are not funny in the moment and I have this automatic response now when things just are terrible. I just start laughing sometimes. Not always, no. It's just the only way out.

Kristina: Yeah. No, I think I wouldn't have found this funny a very long time ago, but I was laughing so hard for all this. It's one of those like, is this really my life moments where you are staring up in the sky.

Lauren: Your dog's looking at you, like this is happening.

Kristina: Exactly. He always looks at me like he knows.

Lauren: I also feel like that could be a really good comedy sketch, like you said, strolling around and all of a sudden the squeaking starts happening or the creaking. I could just imagine you just finding it so hilarious and winding up, not only you're visually using your wheelchair and then there's this audible creaking sound, but then you're also like doubled over laughing. That could just be the funniest moment.

Kristina: I should just embrace it and imitate the noise myself and amplify it to everyone's there.

Lauren: Attention everyone, in case you didn't already notice.

Kristina: Wheelchair user coming through.

Lauren: Thank you for sharing. I love those stories, and at least now that you've told them in a public forum, you can know that those of us who have heard your story are with you next time it happens.

Kristina: That's really lovely.

Lauren: What do you have now that you might not have had without your health challenges?

Kristina: I feel like it brought me a lot closer to my family. About, I want to say a year and a half ago or so, my partner at the time and I we broke up and he was my carer and we lived together and so he left abruptly and my family had to step in help take care of me. And before that point, they had been very sweet and understanding and supportive in other ways when it came to my health, but they hadn't lived with me and seeing how bad it really was. So they didn't understand on a deeper level. And it was so hard to let them see that and to go through that with them on top of going through a breakup. But it's brought us a lot closer and I know I can really count on them. I trust that feeling now, and that means the world to me.

Kristina: So that's a really big one. And my business, I don't think I would've had the courage to do something like this if I wasn't desperate. I was always taught in order to open a business you need to go to business school and you need to have an MBA and you need to experience traditional paths. And life took me out of that path by force and I figured out an alternative and I feel really proud of myself for doing that.

Kristina: So there is that. And just this feeling of, I am strong; I've overcome a lot of things in my short life, and I feel like I can trust that and I can be there for myself and before, especially having struggle with BPD, I would use external validation a lot from that. I would always be searching for that one or two really intense relationships to tell me that I'm okay and tell me I'm lovable and all of that. And being in the situation where I had to provide all of that for myself and learning how to tell myself I'm great, I don't think I ever would have gotten near if I hadn't been forced to. So I'm really, really happy about that.

Lauren: I feel like your way of telling your story gives so much of a light like a guiding star, North Star for folks who are going through it because, and I'm not trying to say that you've finished your journey or that I've finished my journey, but to hear you say this way that you love and show up for yourself is strengthened through the journey that involves you being at the depths of pain, emotionally, physically is so helpful. It's really wonderful to hear you talk about it in the way that you do. I really think that this conversation is going to be helpful for a lot of people. So thank you for revealing your heart. It's just lovely to sit with you.

Kristina: Thank you so much for inviting me on here and for taking the time for this. It means the world.

Lauren: Yeah. Finish this sentence. This is not what I ordered-

Kristina: But it's beautiful anyway.

Lauren: Well, thank you for joining me, Kristina.

Kristina: Thank you so much for having me Lauren. This has been really, really nice.