NO Hope (Episode 10)

Living with a chronic illness as a teenager? You're not alone. Join Kristen for an unfiltered conversation about navigating high school, friendships, and future dreams while dealing with a life-altering diagnosis that changed everything.

Key highlights revealed:
* Raw emotions and real talk about getting heavy medical news as a teen
* Balancing doctor appointments with homework, sports, and social life
* Managing family relationships when everything changes
* Finding new dreams when your original plans get derailed
* Building a support system that actually gets what you're going through
* Practical tips for advocating for yourself with doctors and teachers

Kristen keeps it real, sharing both the tough moments and unexpected silver linings of her journey. She opens up about everything from hospital stays to handling well-meaning but clueless friends and family, offering insights that only someone who's lived it can share.

Perfect for: Teens dealing with chronic illness, major health challenges, or any life-changing diagnosis. Whether you're newly diagnosed or have been managing your condition for years, Kristen's story reminds you that you're stronger than you think and your dreams still matter – they might just look a little different now.

Warning: Contains frank discussion of medical details and emotional challenges. This powerful episode gives you an honest look at life with chronic illness while providing hope and practical strategies for building your new normal.

Transcript

Welcome to Mindshift Power podcast, a show for teenagers and the adults who work with them, where we have raw and honest conversations. I'm your host, Fatima Bey, the mind shifter. Hello, and welcome, everyone. On today's episode, we have with us Kristin Rasler. And Kristin Kristin is 21.

She's a career services assistant at Schenectady County Community College in New York. And, we're gonna talk about living through, being diagnosed with a life altering disease as a teenager. And I'll let her explain to you what what it is that she has and what that was like for her, and and, hopefully, some of you will find this helpful for yourselves or for those around you. How are you doing today? I'm good.

How are you? I'm good. So let's dive right into it. What illness were you diagnosed with as a teen? So I was diagnosed with Crohn's disease at 19, which was definitely a tough time, especially when you're a teenager and you're given this, like you said, life altering disease that you have no control over.

And, okay, so what is what is what is Crohn's disease? What is that? So the it's all scientific, really, but the main point is that it's a irritable bowel disease, which I know some kids will be like, oh, you know, it's just, you know, you go to the bathroom a couple times a day. That's no big deal. But, I mean, it's it's a it's a tough disease to deal with.

You go to I mean, yes. You have issues with the bathroom, and then you also have issues with blood loss, anemia. You have issues with it's an autoimmune disease. So every time that you have to go to, you know, the doctors to make sure you're not sick, you have to tell them about your issues. You know, you can get sick anytime, and you're perpetually sick.

Really? Yeah. Yeah. It's, it's a tough disease. I'll just say that.

Well, what do you mean? But I really want the audience to get what you really mean. You and I have had some discussions off air about it, so I have an understanding pretty much only because of you explaining it to me. But what what is it like to to live with this? What does that mean in terms of the reality of your everyday life?

About every six weeks, I have to get infusions done, which are biological. And, I have to sit in a chair for about three hours, doing pretty much nothing but sitting in the chair with an IV in my arm. And what infusions for what? For my Crohn's disease. So it's Remicade.

It's some biological thing that helps me deal with my, issues. You know, the disease is progressive and there's no cure for it. So it's really just to deal with the symptoms that you have, which are immense pain in your stomach and, you know, trying to get a hold of your weight loss because you're losing all the minerals and nutrients. Not to mention, again, you're losing blood. So Does that does that take away from your energy as well?

Oh, yeah. It does. There were some days when I first got it that I, didn't wanna get out of bed. You know? Mostly, I was just tired from it.

And, you know, there were instances where I mentally was not doing well. You know, I thought that this was the end of my life and I was not gonna make it. I had to get a couple colonoscopies done on it. And I know some it was for me, it was a bit shameful and embarrassing to have to get a colonoscopy done. Yeah, I can understand.

But when they, they first did it, they were talking about how it was one of the most severe cases they'd ever seen. Oh wow. And how I was lucky that I didn't end up in the hospital from it. So if you don't, get the infusions, what I could die. Okay.

So that's pretty serious. Mhmm. And when you found out, what was that like? It hit me hard. It hit my mother harder.

You know, I I like to think that I'm her world, and she says it's true. It's definitely hit her pretty hard, and I know a lot of people who care for their their people who have these illnesses, especially the parents, they have a lot of guilt towards it because they think it's their fault that they gave it. It is genetic. So it's part genetics, part environment. I got it from from one of my sides.

I'm not sure which, but she thinks it's more her side. But for me, it was like I said, I didn't think I was gonna make it. I was really scared, and sometimes I still am. And there are days where I'll wake up and I won't know what I'm gonna do that day. If I'm gonna land in the ER again or if I'm gonna see to the end of the day.

When you found out, did you have any support? I had I had some good support. I had some family members who really just helped me along and appreciated how I was. There were a couple who didn't they were more guilty. They felt more guilty and ashamed because they were the ones who felt it was their fault that they couldn't help me out.

There were some who tried to give me advice on it who didn't have this disease at all. But who thought they could give me more advice than the doctors could. I can't stand that. Well, I appreciate their efforts. It got to a point where one of them was trying to get me to do some herbal remedies for it.

And we're like, you know, hey, the doctors aren't going to do anything. Don't believe in the doctors. We had a falling out over that. What that was one aspect of it. Okay.

And I I no longer talk to that that relative. So Okay. For those of you listening, I want you to hear what, what Kristen is saying and just be mindful when you're around someone like her. Because some of you might be around someone like her right now. And hear what she's saying and be on the receiving end of everybody's so called advice or support.

And sometimes, if you don't know what to do, just being there can be enough and just showing that you care. And if you're you don't understand, it's better off to say that you don't understand, but I wanna be here for you. That's more transparent, and it means more. Am I right? Absolutely.

Absolutely. It does. I think that's one of the most important pieces of advice. Yes. It's I I can't I haven't been there as a teenager, so I can't imagine what that was like.

And that's, you know, why I wanted you on here to to talk because I know there's listeners out there right now who probably are where you were. It may not be Crohn's disease. It might be cancer. It might be HIV. It might be something else.

Mhmm. But what it boils down to is the same thing as far as their repercussions. There are, you know, things we have to do to stay alive. You know? There there's support that we need.

I can't imagine what it'd be like if you had no support. And for and, also, I also wanna speak to another audience who's listening. If you're a relative of someone who gets a a hereditary disease, a genetic, rather, disease, please don't blame yourself. It's not your fault. You didn't you didn't it's not her mom's fault either.

It's not her family's fault. It is what it is. You know? It's not really anybody's fault. You can't help your biology.

You didn't pass it down. It's not like you went up to the stars and the moon and the universe and passed it down. You didn't do any of that. So please don't blame yourself. And I I know that there's a lot of that out there, and that's why I want to address it, because I know it's not just your mom.

Yeah. And so the reason you we're we're a show about teenagers. So I I brought you on here because you were diagnosed with this as a teenager. And, you know, at at you were your senior year of high school, or was it right after? It was right in between my senior year of high school.

I first got, I first had the symptoms and the problems. Yeah. Okay. So, you know, you were still you're so you're still a senior. You're still in high school.

Mhmm. And so, you know, as a teenager, your standard senior, you're out looking. I'm going to college. I'm going to trade school. I'm going to gap year program.

I'm starting my own business. I'm gonna do art school. Whatever it is. Whatever it is. You're making your plans for the rest of your life, and we're all like, what are you gonna do?

This is what we do to you teens all the time. What are you gonna do for your future? So you're in the middle of all of this, and now you get diagnosed with this, life altering disease that could lead to death in short. How how how do you deal with that? How do you how did that affect your outlook in your future?

Well, I, at first, I was like any teen. You know? I was I always hated when all the adults would say, oh, what are you gonna do after this? What are you gonna do? And then, you know, I when I got diagnosed with it, I completely dreaded anybody asking me what I was gonna do after this Yeah.

You know, after high school because, truthfully, I didn't know. I had no idea if I was gonna make it to college. I had no idea how it was going to affect my life. And if I could make it to college, what would that look like? You know?

Will I have to have a colostomy bag with me and carry that around or, you know, have immense amounts of surgery done? You know, how will I what will my outlook be after getting through the first journey of of having this disease? So you're you're explaining your mindset at the time, and I I I hear you're just like I I get that. I think, honestly, I think a lot of people would have reacted that way. We all react different, but I think a greater portion of people probably would have been like, oh my god.

You know? What am I gonna do? Some people would say, why bother going to school? Why bother working? Why bother doing anything?

And they would sink into a depression, which always makes everything worse. Any of your symptoms, any of your diseases are all made worse when you decide. And I said, decide to sink into into depression. That was an issue with me, I will say. My first semester of college absolutely pretty much failed every class I had.

Mhmm. And that obviously lowered my GPA quite a bit. I had to get a lot of help with all of that. I had to get you know, I started seeing a therapist. I started having a success coach from my college.

Okay. I did at one point, I did try to harm myself, and I did try to, you know, unalive myself. But, I'm glad you were a failure at it, go ahead. Thank you. It was after that that I really took a step back and realized I I can't do that.

And I think the one thing that made me get through it all was I have, little cousins, who had at that point just been born. And, I couldn't just leave without being there to see them grow up and I couldn't be there, you know, I couldn't leave without seeing my family, you know, grow and change or especially my mom after the death of my dad when I was young, I couldn't leave her. Okay. There were, it was mostly family that I, I knew I couldn't leave them. So, how are you now?

That's where you were when you were diagnosed. What is your mindset now? That's a good question. Mostly it's pretty good. I mean, there are some days where obviously I'll be more worried about, you know, if I have a stomachache, you know, I'll worry, okay.

Maybe I should call my doctor about this, and I do. You know, there are days where I worry about that or my health insurance. Mhmm. I'll worry about, you know, how that's gonna play out and making sure that I, keep that around. Yeah.

There there are days where I have those those bad days, but I usually what I do is I take all the feelings in. I let it sink in. I'll take the day to just acknowledge all the things that I have, acknowledge all the frustration, anger, pain, sadness. I'll sit with it. I'll let it happen, and then I'll let it go because that's pretty much all I can do.

Right. You can't change your your your health status. There's no, cure for it. It is what it is. Mhmm.

But you can still live the life that you have left. Yeah. Exactly. And that that has taken a lot a lot to to realize that I still have a life without this. You know?

It's it's just a part of my life that I deal with, but it doesn't it doesn't dictate what my life is. In other words, it doesn't define you. Mhmm. Exactly. And I love to hear that.

I love the fact that you were willing to come on the show and and talk about this. I know it's not easy, and I and I do acknowledge that it's, you know, it's a tough thing to talk about when it's still something you're dealing with. You know? Mhmm. And, I'm glad that you're still here.

If nothing else, but to serve as inspiration to others, and I think that that matters. That's a And I really hope it does. You. So if you're listening and you are like her, just know that you are like her whatever your illness is. It doesn't have to be her exact illness, but, just know that your life doesn't have to be over until you decide that it's over.

You know? Even if you got three weeks left, live out those three weeks. Mhmm. You know? Live live every day like you're gonna live forever.

That's the best way. You know? That's the best way to, you know, people say live your your everyday like it's your last, but I say live every day like you're gonna live forever because you're gonna enjoy it more. If you if you think it's your last, you're gonna try to cram a bunch of crap into one day. Yep.

Yeah. I'm I'm a very logical thinker, so I'm just gonna say. But, so My oh, sorry. Go ahead. My my philosophy is live with no regrets.

You can live with mistakes, but no regrets. Yes. And I I get that that, mentality. And you said you mentioned insurance. So you have insurance right now.

Yes. I do. I wanted to talk about that because I think that insurance is something that people kinda mill over. Yeah. Ever since the Affordable Care Act, people have paid more attention to insurance, and it was an it was an issue way before that, which is why the Affordable Act came about.

It wasn't perfect. It fixed some problems, caused others as every system does. Right. Right. Not just that one.

Even the good ones as as true for. But, I I insurance is so important, and I say this because I know there's listeners out there who probably don't consider insurance important. But if you get something like this, she wouldn't be alive without it. Yep. Point blank period.

And, you know, whatever you have to do, even if it's Medicaid, get something. You know, it it matters because you never know when you're gonna need it. And I know that's easier said than done, but we can all you now nowadays, you can get something. Like I said, even if it's Medicaid and even if it only covers a little bit, it's something. Exactly.

So I'm glad that you you are insured. So you work full time right now? So I work part time right now. Oh, part time. I apologize.

No. No. You're fine. I I work part time mostly because of the insurance. At first, I didn't think insurance was a big issue because when I first got diagnosed, again, I was a teenager.

I didn't care about insurance. Yep. But the reason I I talk about insurance is because I knew it was very critical after that. My insurance, you know, it's tough trying to navigate having a job, you know, especially there's a certain amount that I have to make, in order to still keep the insurance. Right.

Right. So I can't do, you know, like, a lot of part or not a lot of a lot of full time work. Excuse me. A lot of places, the full time work is gonna pay too much for me to keep the insurance. I understand.

And that's why I wanna talk about it. The all that stuff matters. Yeah. It's we have to play games in order to be covered and and, you know, get what's needed. And, it's a shame that we should have to do that, but we do.

Exactly. Yeah. We we have a system if to me, if you have to do that, we have a system that's broken somewhere. You know? Exactly.

And that's why I wanted to, shine a light on that aspect. Yes. Yes. So if you were if you did aside from the insurance, if you wanted to work a full time job with this Crohn disease, would that be possible? It would be, mostly because well, it depends.

Most of the places will accept it as a disability, because it is on the disabilities list. So, of course, there is the aspect of, hey. I have to go in every six weeks for about three hours. You know? How is that gonna work?

You know, obviously, I have seen, some people, especially, a lawyer who was doing some amendments or something to a case, while still in the chair doing their infusions. And they were doing a meeting, via Zoom and still just sitting there doing it. So what I'm hearing from you in that statement, and, again, I'm saying this for the for the sake of the audience, what I'm hearing is that no matter what your diagnosis is, where there's a will, there's a way. Exactly. If you wanna get something done, you might have to get it done in an unconventional way, But one way or another, you can do it.

Yeah. And to that person, they gave me hope and inspired me. So That's awesome. I'm glad to hear that. I'm glad to hear that.

What advice do you have out there for any teens who are being who just got diagnosed with a life altering disease? What would you say to them right now? First thing that comes to mind is don't give up. As someone who tried and failed, don't give up. Please don't go down that road.

See somebody who can help you, a therapist. You know, there's no shame in seeing a therapist. I personally see one. I have I have a therapist and, a psychologist I see. You know, it's there's no shame in it, and it's not embarrassing to talk about your feelings.

I was one of the people who bottled up their feelings because, you know, you don't really wanna do that. You wanna not be vulnerable, but sometimes it's good to be vulnerable. And it definitely will help your mental health a lot more. And your mental health is pretty much as important as your physical health. It really is.

And it will definitely help who you are after the diagnosis. It will help shape who you become and I hope that that person is inspiring and very intuitive with themselves and others who will listen to their body, who will help others who have, an illness like them or, you know, maybe the same illness or maybe even just others who are having a, you know, something with their mental health, because you've been there, and you're gonna be able to help them through it. Yes. I wanna piggyback on something that she just said, and I think it's important and something you will repeatedly hear me say. Get therapized.

Mhmm. Yep. There you go. We we honestly, everybody needs therapy. We don't all need the same form of therapy.

Yep. But we do all need to deal with and organize our emotions. We need to deal with and organize those things that are holding us back or may hold us back if we don't deal with them. And there are different ways of doing that. Some is officially going to a certified therapist in a therapist's office.

Some people get therapy in other ways. And I'm not talking about crazy ways, so y'all get that out of your head. I I just mean, you know, for some people, therapy is and it's enough to talk to a friend and bounce your thoughts off of them, and that friend can give you a little bit of feedback. And for some people, that really is enough. They don't need to dive any deeper because that's enough for them.

And and I'm saying that because some people think that when you say go to therapy, that you have to get super analyzed for twenty five years. You you really don't. And even if you talk to a level headed therapist, they'll tell you that's not true. You know? They you you they think that you sit on a couch, you go, my feelings went out.

And it's it's it's not you talk about your feelings. Yes. But it's not just that. The therapist can help you sort out your thoughts. You are you might be intelligent enough to to be able to do it on your own, but you're still a human being.

You still need someone to help you organize those thoughts, to help you figure out the little tiny pockets that you haven't figured out and to make a big, big, big, big difference. Just like you heard Kristen said, it made a huge difference for her. Right? Absolutely. Yeah.

Yeah. And I think therapy makes a difference for a lot of people if you just try it. So that's my little speech on therapy, but I I think that everybody needs it. And I don't care if you're an executive or, you know, way up in the government of the US. I don't care what your title or position is.

You are still human. Mhmm. Alright. Well, Kristen, thank you so so so much for coming on the show today. I was actually really looking forward to to this particular episode and hearing what you had to say.

And, thank you for being vulnerable, allowing yourself to, to be honest and real and talk about things that are just kind of, yes, sensitive. And, I hope that you listeners out there are inspired by Kristen, and I hope that you, if you were just diagnosed with something, that you're the next Kristen. And now for a mind shifting moment. If you were diagnosed with something devastating and detrimental and life altering like Kristen was, first of all, put your arms around yourself, and I want you to feel my big, giant virtual hug. My heart goes out to you.

Second of all, I hope that you were able to hear through Kristen that your life is not over until it's over. No matter how bad it is, you can still live the life that you have left in a productive manner. Your attitude can determine to an extent your longevity because your attitude affects your physical illness, your physical wellness. It affects your physical body. And my hopes are that you were able to get some hope and inspiration from living, listening to someone who who is living with that.

Please don't give in to depression. Please don't give in to those suicidal thoughts. Please don't give in to giving up on life. Whatever you've got left, enjoy it. Use it.

Thank you for listening to Mindshift Power Podcast. Please like and subscribe to my YouTube channel at the mind shifter. If you have any comments, topic suggestions, or would like to be a guest on the show, please visit fatimabay.com/podcast. Remember, there's power in shifting your thinking. Tune in for next week.