Pockets Of Joy After Diagnosis

What happens after the diagnosis, when the pamphlets end and real life begins? We open up about the messy middle: the anger at being dismissed, the relief of finally being believed, and the slow turn toward joy that doesn’t deny pain. Our conversation traces the path from confusion to clarity, showing how better information, kinder self-talk, and small, repeatable habits rebuild a life that feels like yours again.

We share the moments that changed our mindset—an elder’s “move it or lose it” mantra that reframed activity, the first time a mobility aid left the car and came into the store, and the day we stopped hiding illness from kids and watched them respond with curiosity instead of judgment. You’ll hear how we adapt movement without glorifying push-through culture, why rest counts as progress, and how nutrition and pacing become tools instead of punishments. We talk about the evolving medical landscape too: more education at diagnosis, clearer care plans, and the power of finding professionals who speak chronic illness fluently.

If you’ve ever felt too young to be this sick, if you’ve been told you’re “just tired,” or if you’ve wondered whether joy still fits in a body that hurts, this episode is for you. We offer practical ways to find pockets of joy during flares, use mobility aids without shame, and measure wins in consistency rather than intensity. The mountain isn’t only the illness—it’s learning to climb with better maps, truer friends, and a voice that says you still get a full, worthy life.

If this resonates, follow the show, share it with a friend who needs a little hope, and leave a quick review so others can find it. Your story might be the umbrella someone else needs.

Keep your spoons close and support system closer.

Chapters

• 0:00 Beyond Diagnosis: Setting The Tone
• 0:47 From No Info To Empowerment
• 1:21 Mindset Then Versus Now
• 2:31 Pockets Of Joy: Stories That Shifted Life
• 3:43 Move It Or Lose It
• 5:06 Adapting Activity To Your Body
• 6:37 Relief, Anger, And Being Believed
• 8:24 Stigma, Aids, And Owning Visibility
• 10:39 Kids Notice Care, Not “Sick”
• 12:51 Advice To Our Younger Selves
• 16:37 Joy Beside The Sad
• 17:25 Closing And What’s Next

Transcript

SPEAKER_00: 0:08

Welcome back to my Spoony Sisters. We are going to talk to you about beyond diagnosis and finding joy. How are we going to pick up the pieces after a diagnosis? That's our hot topic for the day. So hello, Andy.

SPEAKER_02: 0:25

Hello.

SPEAKER_00: 0:26

Hello, Linia.

SPEAKER_02: 0:27

All right, ladies. So usually when we start talking about stuff like what happened after diagnosis, it gets super heavy, right? This conversation I wanted to go a little bit different. When I got diagnosed, I didn't get a lot of information with my diagnosis, right? And it I think that that kind of triggered my sad, my years of sad. When I started getting information though, I think I felt more empowered and I wasn't as sad. So can we talk just a little bit about the difference between the information that you had when you got diagnosed versus the information you have now? And what's the difference of your mindset diagnosis versus right now in your journey? Jen, we'll start with you.

SPEAKER_00: 1:13

Oh okay. So my mindset initially was terrible. And I think part of it was because I had the lack of information, right? I was handed a few pamphlets sent on my merry way with prednisone. And so my mindset was trash. I absolutely was convinced I'm gonna look like a 90-year-old lady. My mindset now is I have a life to live, and I still have so much to offer the world. And that that's probably the one piece of advice I give to everyone is you have so much to offer. It might look differently, but that's okay. You are still you. You are still beautiful and amazing in all the ways, and all the pieces of you need to be shared with the world still.

SPEAKER_02: 1:54

So I love how you took us on the happily ever after, which means that from the time that you got your diagnosis to now, you have had moments of rediscovery and pockets of joy. You have gone from, I'm not gonna be able to do this to let's go on this adventure. What were some of your pockets of joy as you discovered the things you could still do even with your diagnosis or new things that you didn't think that you could do?

SPEAKER_00: 2:21

So there were a couple things. My first pocket of joy was a woman that I went to church with. And she was in her 80s. She's no longer with us. She passed away a couple of years ago. She made it indoor 90s. But she and her husband, every single day, would go on a walk in their neighborhood. It didn't matter if it was raining, snowing, whatever. They went for a walk. Their goal was to do at least a mile every day. And they also spent a lot of time delivering meals to people that couldn't get out of their homes, stuff like that. And she had polio as a child, which caused some issues for her. She had a hard time swallowing. Most of her foods had to be blended. And she also had rheumatoid arthritis. And so talking to her, she gave me a piece of advice that that has sat with me forever. And it was you move it or you lose it. And she said, the moment my children put me in a home, I'm gonna die. So you keep moving that body. And I think taking that piece of advice really just flipped my whole mindset back to I can try the things, I can do the things. And so yeah, uh that was probably 2012, 2014. I went with my family on a packing uh that won't packing trip. It was four miles in and four miles out, but we stayed for a few nights, and that was something I didn't think I was going to be able to do once I was diagnosed with rheumatoid arthritis. I thought that hiking, walking, running were all out for me. And there's been times where they have been, but I have to listen to my body and where my pain is at. And my life wasn't over. I still got to do things. I still get to work out. Everything's a little different. I have to adapt. My shoulders don't like me sometimes, my hands don't like me, my wrists don't like me. But that's okay. I just do something different. Yeah. So that's how I got there.

SPEAKER_01: 4:08

How about you, Lania? So I had a little bit different experience when I was diagnosed, as my mother had already. So I went into it kind of already knowing what I mu possibly could have, but also knowing what the disease was and the medication kind of, but I didn't know how to adapt it to my life as a late 20-year-old with small children. My mom was older, so it was a hard adjustment there where you didn't there wasn't much information out there. I chose movement when I first was diagnosed. What happened was I didn't listen to my body because I didn't know that my body was going to react differently to movement and to exercise the way I was used to exercising. It actually set me back, I believe. In my heart, I believe I just pushed it too hard. And I did spiral. I went down a very dark road. I have come out of that dark hole to a brighter, to a healing need. Um, I'm very much on my healing journey right now. But mindset is a big deal in chronic illness. But there's so much more information out there now that doctors are giving out. I noticed with my daughter as she's getting a diagnosis for something, she's getting more information than we did, I believe. Then doctors now are starting to go, we've got to give more information. But I also I reached out to friends that had chronic illnesses. I found somebody to work with that knew nutrition, knew mindset practices, knew everything I needed to make my journey smoother so I could live. I am starting to do things I haven't done in 15 years. You know, I can go out on the side by night side now for several hours. Where before it was like several hours would put me down for two weeks. So mindset's a big thing in chronic illness. Did that answer your question?

SPEAKER_02: 6:07

It did. So how old were you when you got your diagnosis? You were late 20s? How were you mid-20s, Jen, or late 20s?

SPEAKER_00: 6:16

32.

SPEAKER_02: 6:16

Okay, so I got mine was I was early 30s, I want to say. Okay, yeah. So at early 30s and hearing it, was it a sigh of relief? Like, I'm not going crazy. Hey, this is really going on. And then uh, what do I do now? Or was it like immediate? Well, this sucks. For me, it was okay, I got a name. I got a name to it. I'm not going crazy. My first emotion was anger. I wasn't sad. My first emotion was anger because I was going through it for as long as I was going through it, and nobody believed me. So my first emotion was anger. I was angry before I was sad. I didn't start getting sad until a couple years into my diagnosis when I'm like, oh, this is my life now. You know, what about you guys? Were you relieved or were you angry first? And then you kind of transition into, I can find my pockets of joy?

SPEAKER_01: 7:19

No, I was mad. I was I was very mad. I will, and why I was so mad is because my mother had it. I was having symptoms that my mother had. I was mad because I was being ignored because I simply were in my 20s. I was being ignored because I was a young mom. You're just tired. Your babies are so the anger just kept with me from the beginning of being ignored. So it was raging by the time my diagnosis. But then the sad hit, and that's when the depression hit, because it went, I went from one extreme to the other extreme. There was no in between.

SPEAKER_02: 7:56

And you had like postpartum sprinkled in there, so that's crazy. That is an emotional yo-yo. And I had had a hysterectomy because of endometriosis.

SPEAKER_01: 8:06

Good grief. Your hormones hated you at that time. So all that at the same time, and then a diagnosis, and then grief from losing my mother from you know, you don't so it's it's the stuff that people don't see.

SPEAKER_02: 8:19

And I tell people all the time, listen, everybody's carrying something you can't see, so kindness is free. You carry that, right? And the average person would never look at you and go, Man, she was carrying that. You know?

SPEAKER_01: 8:31

They go, Most people didn't know sterectomy and all that was going on at the same time I was having the symptoms. Like Yeah. How about you, Jen? Did you start with anger?

SPEAKER_00: 8:43

It was a mixture of relief and anger because I was having symptoms way back when, just like Linia, but I didn't know what it was and how to how to even tell a doctor something was wrong. And like Linnea, I went through I went through a hysterectomy at 26 years old because of endometriosis. I'd already gone through several different things. And then this mystery joint pain that started up in 2010. And so by the time I was 32, it was like, oh my gosh, this is a shit show. And what is wrong with me? I remember my my family doctor thought it was an infection, like a strep infection in my knee that was causing the pain. And we were both like, okay, whatever. And then he was like, Oh, wait a minute, it might be a form of rheumatism, but I'm not sure what kind. Let's send you to a rheumatologist. And when I explained that to my husband, my husband was like, rheumatism? He's just telling you that to give you like, to basically shut you up. He was like, he's just giving you a quack diagnosis of something. And so we went into the rheumatologist, not actually expecting an answer. We went in thinking, I'm gonna be treated like I'm crazy. And so it was relief to have an answer, but angry there was this whole situation to begin with, because I had three middle schoolers at home to get to school and go to their functions, football, volleyball, all the things. It was awful.

SPEAKER_02: 10:05

I was just angry. Like I was very angry for 16 years. I don't even know that I I think I was I had hit the sad point that I was so sad that the only emotion I had was anger. I was like numb. I was I was numb for a very long time, but I was a highly functioning, depressed individual. Tons of people around me and had no idea how dark things had gotten. And then I stumbled across, it's always old people, because I love old people, right? I really do. I love old people. I stumbled across an old lady and she was in the grocery store and she was doing all of her own grocery shopping. Okay. She had all the mobility aids, the same mobility aids that I was ashamed to have. She didn't care. She was pushing her little buggy and she saw me kind of like hobbling around. And she said, You know that you're moving slow because of you. And I paused and she said, You know, in the other aisle they have canes. And I was like, I have one that's in the car. And she was like, it should probably be in the store. She's like, I have two. One was in her cart, back up, collapsible one in her purse. But she was like, Don't be ashamed, you can still do. I realized what I became happier when I stopped hiding it from the kids because kids just genuinely want you to be okay, right? And as many youth athletes that as I was around, I always with super woman face. When I started being honest with them, and I hit them with, listen, I'm out here doing this in this body. I need you guys to never tell me you can't do something. And they started asking me more questions about what it's like to be in my body, but to watch their ears perk up, like, wait a minute, I'm watching you in this body that attacks you all day. Show us how to do these things. You could still do it. So I'm gonna go be the best version of me for you. My little pockets of joy, little ceilings all around, little pockets of joy. I'm gonna go be the best version of me for you because you told me it was possible. You're doing it. You're showing me it's possible, even when mentally I don't think it's possible. Physically, I know that it can be done. The mountain is me. I think that's why I like youth sports so much. They're so innocent. The world has not tainted them, they have not tainted their perspective of human encounters yet, all the time.

SPEAKER_01: 12:29

So what else, guys? Joy, finding joy. Amanda's so for me, when I first was diagnosed, um, I was still working for the school district, and then I moved to the high school, and I noticed as my disease was progressing, the kids were noticing almost more than the adults were noticing. They noticed changes in me because they would come up to me and tell their whole life stories. I might not have been smiling as much that day, and they would notice that. As soon as I explained to them, hey, I have this disease, this is what's happening, they would pop in on cold days and go, How are you doing, Missley? And it brought me joy in the midst of my anger. And I knew I was starting to looking back, I was starting to go into a depression, but I knew those were my pockets of joy still working. And when I left my job because of my health, that's when I lost some of those joys. And then my kids as friends started bringing them home with them. And so they would come to the house and my kids would crawl in bed. So I was finding joy in those little things in spite of the anger.

SPEAKER_02: 13:36

And so it's because the kids don't see sick. Kids don't see sick, they just see their person. They see a person that made them feel safe. They don't see sick. Adults see sick and then go, you're unable to do sick, incompetent. Not really. I am sicker than the average person, yes, can do so many awesome things. And I got some pretty amazing friends that can do some pretty phenomenal things as well. So yeah. So what would you tell you today? Today, what would you tell young you about finding pockets of joy along the way? We'll start with Jen. Jen, what would you tell thirty early 30-year-old you about finding pockets of joy along the way?

SPEAKER_00: 14:20

I would tell her that she's gonna meet some pretty cool people. And she's gonna still do some pretty amazing things. So don't get stuck in the sad. Don't get stuck in the the pity party. Don't get stuck in the feeling, feeling like people aren't noticing, because later you're gonna be mad at noticing. So focus on what you can do and it and how you can change things. And just recognize that this life is still going to be such a beautiful thing. I never thought that I would go help build a house in Mexico. I got up on a roof and and helped install a roof. These were things I never thought I would be able to do. And so that's what I would tell myself is just you're gonna do those amazing things and you're gonna find ways to do them. So do them.

SPEAKER_01: 15:06

I love it. How about you, Lania? Tell her to not hide so much. I wish I could have told her that it would have been okay that you will find you will find the resources, you will find your people. But I would have told her not to hide it so much from even my family. Like, because I really did. I hate it a lot. I hid it at work, I hid it at home because I didn't want it to affect him. And in the long run, it hurt me more than it hurt anybody. But also to find those pockets of joy more. I wish I would have maybe made Rick park the truck in a different way so I could have sat in the truck versus setting out at a ball game. I wish I would have been more creative on certain things like that. I don't regret anything like that. I still found my joy at home with my children. I have all the videos to show of it, all the silly videos of my daughter singing silly songs, like TikTok, but it was pre-TikTok because they made me laugh and myself staring me. So find those little joys amongst the hard days. And it just takes one little joy a day.

SPEAKER_02: 16:16

Joy is all around you. Joy is all around you. I hear Kyla's laughter differently now because I intentionally choose joy. I I hear her laughter differently. It's contagious. I just this is a great conversation. I feel happy, guys.

SPEAKER_00: 16:32

I feel happy. I love this topic. Can we do this m this topic all the time? It's uplifting and it's it's great to talk about the happy stuff.

SPEAKER_02: 16:41

Yeah. It doesn't always suck, guys. So if you're listening, and we hope that you are, it doesn't always suck and it doesn't stay sad, but you will have moments of sad. You will have pockets of sad. Feel what you need to feel, but know that there is pure joy on the other side of your pocket of sad. Sometimes it's just kind of hard to walk through the storm. It's worth it though. It's worth it. But at any rate, we'll be there holding an umbrella and maybe some extra spoons. So with that, we will see you guys in another episode. Stay tuned for some fun stuff, maybe some off the wall conversations. We're not sure. We're still spinning the wheel. But with that, don't forget your spoons.