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.

嗯，你到底是什麼意思？但我真的希望觀眾能明白你真正的意思。你和我在電視之外討論過這個問題，所以我能理解，很大程度上是因為你給我解釋了。但接受這個現實會是什麼感覺？這對你的日常生活意味著什麼？

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.

你知道，有些時候我的精神狀態不太好。你知道，我以為我的人生就此終結，我撐不下去了。我不得不去做幾次大腸鏡檢查。我知道，對我來說，做大腸鏡檢查有點羞恥和尷尬。是的，我能理解。

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.

有時候，如果你不知道該怎麼做，只要陪在你身邊，表達你的關心就夠了。如果你不明白，最好直接說你不明白，但我想陪在你身邊。這樣比較坦誠，也更有意義。我說得對嗎？絕對正確。

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.

我無法想像如果沒有支援會是什麼樣子。另外，我也想對其他正在聆聽的聽眾說幾句話。如果你的親戚患有遺傳疾病，或者說，基因病，請不要責怪自己。這不是你的錯。你沒有，你沒有，這不是她媽媽的錯。

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?

我們總是這樣對待你們青少年。你們打算如何規劃自己的未來？你們正處於這一切之中，現在卻被診斷出患有這種足以改變生命、甚至可能導致死亡的疾病。你們該如何應對？這對你們的未來有何影響？

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.

你知道，高中畢業後，因為說實話，我當時真的不知道。我不知道自己能不能上大學。我不知道這會對我的生活產生什麼影響。如果我能上大學，那會是什麼樣子？你懂的。

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.

你知道嗎？我該怎麼辦？有人會說，幹嘛還要上學？幹嘛還要工作？幹嘛還要做事？

他們會陷入憂鬱，這總是會讓一切變得更糟。你的任何症狀，任何疾病，當你決定的時候，都會變得更糟。我說，決定陷入憂鬱。我得說，這對我來說是個問題。大學第一學期，我幾乎每門課都不及格。

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.

好的。我曾經嘗試過傷害自己，也嘗試過，你知道，讓自己不活。但我很高興你失敗了，繼續吧。謝謝你。直到那之後，我才真正退一步，意識到我做不到。

我想，支撐我撐過這一切的，是因為我有幾個表弟表妹，他們當時才剛出生。我不能不看著他們長大就離開，也不能不看著我的家人成長和變化就離開，尤其是在我小時候父親去世後，我更不能離開我的母親。好吧。我知道，我最不能離開的，就是家人。那麼，你現在怎麼樣了？

你確診的時候就是這個狀態。你現在是什麼心態？這個問題問得好。大部分時候都挺好的。我的意思是，有些日子我明顯會更擔心，例如，如果我肚子痛，我就會擔心，嗯。

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.

對。你無法改變你的健康狀況。沒有治癒方法。它就是這樣。嗯。

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?

這只是我生活中需要處理的一部分，但它並不能決定我的人生。換句話說，它不能定義你。嗯。沒錯。我很高興聽到你這麼說。

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.

你可以接受錯誤，但不能後悔。是的。我理解這種心態。你剛才提到了保險。所以你現在有保險。

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.

所以我很高興你買了保險。所以你現在是全職工作？我現在是兼職。哦，兼職。抱歉。

不，不。你沒事。我做兼職主要是因為保險。一開始我沒覺得保險是什麼大問題，因為我第一次被診斷出來的時候，還是個十幾歲的孩子。

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.

對。所以我不能做很多兼職工作，或者說很多全職工作。不好意思。很多地方的全職工作薪水太高，我根本負擔不起保險。我理解。

這就是我想談論它的原因。所有這些都很重要。是的。我們必須玩弄手段才能獲得保障，並且，你知道，獲得所需的一切。很遺憾我們必須這樣做，但我們確實這麼做了。

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.

去找個能幫你的人，例如心理醫生。你知道，看心理醫生沒什麼好羞恥的。我個人看過一位。我找過心理醫生，也看過心理醫生。你知道，這沒什麼好羞恥的，談論你的感受也不是什麼尷尬的事。

我就是那種會壓抑自己感情的人，因為你知道，你真的不想那樣。你不想展現脆弱，但有時候展現脆弱反而是件好事。這絕對會更有益於你的心理健康。你的心理健康和你的身體健康幾乎一樣重要。真的如此。

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.

我之所以這麼說，是因為有些人覺得，當你說要去做心理治療時，就必須接受長達25年的深度分析。其實不然。即使你找一位頭腦清醒的治療師，他們也會告訴你，事實並非如此。你懂嗎？他們覺得你只要坐在沙發上，就能感覺不到自己的情緒波動。

這不是你談論你的感受的問題。是的。但不僅僅是這樣。治療師可以幫助你理清思緒。你或許夠聰明，能夠自己做到這一點，但你仍然是一個人。

你仍然需要有人幫你理清思緒，幫你理清那些你還沒理清的細微之處，並帶來巨大的改變。就像你聽到克莉絲汀說的，這對她來說意義重大。對吧？絕對是如此。是的。

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.

其次，我希望你能從克莉絲汀那裡聽到，你的生命不到最後一刻都不會結束。無論情況多麼糟糕，你仍然可以以富有成效的方式度過餘生。你的態度在某種程度上決定了你的壽命，因為你的態度會影響你的身體疾病和健康，影響你的身體。我希望你能從生活中，從聆聽那些正在經歷這些的人的敘述中獲得一些希望和靈感。

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.