"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.   -   Fatima Bey

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.

Y, bueno, ¿qué es la enfermedad de Crohn? ¿Qué es eso? Bueno, todo es científico, en realidad, pero lo principal es que es una enfermedad del intestino irritable. Sé que algunos niños dirán: "Bueno, es solo que vas al baño un par de veces al día. No es para tanto". Pero, bueno, es una enfermedad difícil de sobrellevar.

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.

Bueno, ¿qué quieres decir? Pero quiero que la audiencia entienda lo que quieres decir. Hemos tenido algunas conversaciones fuera del aire sobre esto, así que lo entiendo prácticamente solo porque me lo explicaste. Pero ¿cómo es vivir con esto? ¿Qué significa eso en tu vida diaria?

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.

Es algo biológico que me ayuda a lidiar con mis problemas. La enfermedad es progresiva y no tiene cura. Así que se trata simplemente de lidiar con los síntomas, que son un dolor de estómago inmenso y, bueno, intentar controlar la pérdida de peso porque se están perdiendo todos los minerales y nutrientes. Sin mencionar, de nuevo, que se está perdiendo sangre. Entonces, ¿eso también te quita energía?

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.

Y, sabes, hubo momentos en los que no me sentía bien mentalmente. Pensé que era el fin de mi vida y que no iba a sobrevivir. Tuve que hacerme un par de colonoscopias. Y sé que para algunos fue así; fue un poco vergonzoso tener que hacerme una colonoscopia. Sí, lo entiendo.

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.

Así que eso es bastante serio. Mmm. Y cuando te enteraste, ¿cómo fue? Me afectó mucho. A mi madre le afectó aún más.

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.

Hubo quienes intentaron aconsejarme, aunque no padecían la enfermedad en absoluto. Pero creían que podían darme más consejos que los médicos. No lo soporto. Bueno, agradezco sus esfuerzos. Llegó un punto en que uno de ellos intentó convencerme de que tomara remedios herbales.

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.

Y a veces, si no sabes qué hacer, basta con estar ahí y demostrar que te importa. Y si no lo entiendes, es mejor decir que no lo entiendes, pero quiero estar aquí para ti. Eso es más transparente y significa más. ¿Tengo razón? Totalmente.

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.

Mmm. Pero en resumen, es lo mismo en cuanto a sus repercusiones. Hay cosas que debemos hacer para sobrevivir. ¿Sabes? Necesitamos apoyo.

No me imagino cómo sería si no tuvieras apoyo. Y, además, quiero hablar con otra audiencia que está escuchando. Si eres familiar de alguien que padece una enfermedad hereditaria, o mejor dicho, genética, por favor, no te culpes. No es tu culpa. No la tuviste, tampoco es culpa de su madre.

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.

Sí. Y entonces la razón por la que eras un programa sobre adolescentes. Te traje aquí porque te diagnosticaron esto en la adolescencia. Y, sabes, estabas en tu último año de preparatoria, ¿o fue justo después? Fue justo entre mi último año de preparatoria.

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.

Mmm. Y bueno, ya sabes, como adolescente, como cualquier estudiante de último año, estás buscando trabajo. Voy a la universidad. Voy a una escuela de oficios. Voy a un año sabático.

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.

¿Sabes? ¿Qué voy a hacer? Algunos dirían: "¿Para qué molestarme en ir a la escuela? ¿Para qué molestarme en trabajar? ¿Para qué molestarme en hacer algo?"

Y se hundían en una depresión, lo que siempre empeora todo. Cualquier síntoma, cualquier enfermedad, empeora cuando decides. Y dije: «Decide hundirte en la depresión». Eso fue un problema para mí, debo decir. En mi primer semestre de universidad, reprobé prácticamente todas las asignaturas.

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.

Y creo que lo único que me ayudó a superarlo fue tener primos pequeños, que para entonces acababan de nacer. Y no podía irme sin estar presente para verlos crecer, y no podía estar presente, ¿sabes? No podía irme sin ver a mi familia crecer y cambiar, especialmente a mi madre, después de la muerte de mi padre cuando era joven. No podía dejarla. Bueno. Era principalmente familia, y sabía que no podía dejarlos. ¿Cómo estás ahora?

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.

Cierto. No puedes cambiar tu estado de salud. No tiene cura. Es lo que es. Mmm.

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.

Puedes vivir con los errores, pero no con los arrepentimientos. Sí. Y entiendo esa mentalidad. Y dijiste que mencionaste el seguro. Así que tienes seguro ahora mismo.

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.

Me alegra que tengas seguro. ¿Trabajas a tiempo completo ahora? Trabajo a tiempo parcial. Ah, a tiempo parcial. Disculpa.

No. No. Estás bien. Trabajo a tiempo parcial, principalmente por el seguro. Al principio, no pensé que el seguro fuera un gran problema porque cuando me diagnosticaron, era adolescente.

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.

Y por eso quería aclarar ese aspecto. Sí. Sí. Entonces, si, además del seguro, quisieras trabajar a tiempo completo con la enfermedad de Crohn, ¿sería posible? Sí, sobre todo porque, bueno, depende.

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?

Obviamente, he visto a algunas personas, especialmente a un abogado, que estaba haciendo modificaciones o algo similar en un caso, mientras aún estaba en la silla haciendo sus infusiones. Y estaban en una reunión por Zoom, y seguían sentados allí haciéndolo. Entonces, lo que escucho de usted en esa declaración, y, repito, lo digo por el bien de la audiencia, es que no importa cuál sea su diagnóstico, donde hay voluntad, hay un camino. Exactamente. Si quiere lograr algo, puede que tenga que hacerlo de una manera poco convencional, pero de una forma u otra, puede lograrlo.

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.

¿Qué consejo les darías a los adolescentes que acaban de ser diagnosticados con una enfermedad que les cambia la vida? ¿Qué les dirías ahora mismo? Lo primero que me viene a la mente es que no se rindan. Como alguien que lo intentó y fracasó, no se rindan. Por favor, no sigan ese camino.

Consulta con alguien que pueda ayudarte, un terapeuta. No hay vergüenza en ir a un terapeuta. Yo personalmente voy a uno. Tengo un terapeuta y un psicólogo. No hay vergüenza en ello, y no es vergonzoso hablar de tus sentimientos.

Yo era de las personas que reprimió sus sentimientos porque, ya sabes, no quieres hacerlo. No quieres ser vulnerable, pero a veces es bueno serlo. Y sin duda te ayudará mucho más a mejorar tu salud mental. Y tu salud mental es tan importante como tu salud física. De verdad que lo es.

Y definitivamente te ayudará a ser quien eres después del diagnóstico. Te ayudará a moldear la persona en la que te convertirás, y espero que esa persona sea inspiradora y muy intuitiva consigo misma y con los demás, que escuche a su cuerpo, que ayude a quienes padecen una enfermedad similar a la suya, o quizás la misma, o incluso a quienes tienen algún problema de salud mental, porque has pasado por eso y podrás ayudarlos a superarlo. Sí. Quiero retomar algo que acaba de decir, y creo que es importante y algo que me oirás decir repetidamente: busca terapia.

Mmm. Sí. Ahí lo tienes. Sinceramente, todos necesitamos terapia. No todos necesitamos la misma terapia.

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.

Sigues siendo humana. Mmm. De acuerdo. Bueno, Kristen, muchísimas gracias por venir al programa hoy. Tenía muchísimas ganas de ver este episodio y escuchar lo que tenías que decir.

Y gracias por ser vulnerable, por permitirte ser honesto y real, y por hablar de cosas que son, sí, sensibles. Espero que Kristen los inspire, y espero que, si te acaban de diagnosticar algo, seas la próxima Kristen. Y ahora, un momento para cambiar tu mentalidad. Si te diagnosticaron algo devastador, perjudicial y que te cambió la vida como a Kristen, primero que nada, abrázate y quiero que sientas mi enorme abrazo virtual. Te acompaño en el corazón.

En segundo lugar, espero que hayas podido escuchar a través de Kristen que tu vida no termina hasta que termina. No importa lo mal que esté, aún puedes vivir la vida que te queda de forma productiva. Tu actitud puede determinar, hasta cierto punto, tu longevidad, porque afecta tu enfermedad física, tu bienestar físico. Afecta tu cuerpo. Y espero que hayas podido encontrar algo de esperanza e inspiración al vivir, escuchando a alguien que está viviendo con eso.

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.