My Spoonie Sisters
Welcome to My Spoonie Sisters! If you're wondering what a "Spoonie" is, it’s a term lovingly embraced by those living with chronic illnesses, based on the Spoon Theory. It’s all about managing our limited energy (or “spoons”) while navigating life’s challenges.
Each week, join us to hear from your "Spoonie Sisters" host, co-hosts, and our inspiring special guests as we share real-life stories, tips, and encouragement. Whether you're here to learn, connect, or feel less alone, you’ll find a supportive space filled with understanding, laughter, and strength. Let’s journey through chronic illness together!
Tune in and join the sisterhood!
All guests featured or mentioned in this podcast will be listed for your convenience. Don't forget to rate and subscribe to My Spoonie Sisters and follow @MySpoonieSisters on Instagram for updates on new episodes and more. If you have a story to share or want to be featured on My Spoonie Sisters, please email MySpoonieSisters@gmail.com. We eagerly look forward to speaking and hearing from all our Spoonies!
Disclaimer: While we are not doctors or healthcare Practitioners, we want to assure you that this podcast is a credible source of information. It's based on our guests' personal experiences and the strategies we've found effective for ourselves. However, everyone's body is unique, and what works for one person may not work for another. If you have any health-related questions, it's always best to consult your Primary Doctor or Rheumatologist.
Remember, our goal at My Spoonie Sisters is to connect people and provide them with the support and tools they need to live better lives.
My Spoonie Sisters
So, You're Newly Diagnosed Part 1
Imagine the moment: sitting in a doctor's office, hearing those words for the first time – "You have a chronic illness." What follows isn't just medical treatment, but an emotional journey through fear, confusion, and eventually, finding your way forward.
We've been in that exact seat, and in this heartfelt season opener, my Spoonie Sisters and I share the raw, unfiltered truth about our diagnosis experiences. Andi reveals how years of medical gaslighting led to a diagnosis only after a serious health crisis, while I found relief in finally having answers. Linnea opens up about the fear of following her mother's difficult RA journey, not realizing newer treatments would offer different possibilities.
The conversation dives deep into what we desperately wish someone had told us early on. "This is not your great-grandmother's disease," I share, reflecting on how outdated perceptions of arthritis initially terrified me. Andi emphasizes the life-changing power of finding community after years of isolation: "I encourage people, please find sisterhood and brotherhood so you don't spiral in self-isolation."
We tackle the challenges that follow diagnosis – from handling information overload to the frustration of constantly proving an invisible illness. "Just because I don't look ill doesn't mean I'm not ill," Andi explains, challenging the common misconception of what "sick" should look like.
Whether you're newly diagnosed or years into your journey, this episode offers both practical guidance and emotional support. Our shared experiences create a roadmap for navigating the complex terrain of chronic illness with dignity, self-compassion, and even joy. Because as we discover together, chronic illness changes how you move through the world, but it doesn't have to define your capacity for connection and happiness.
So, You’re Newly Diagnosed:
Imperfectly You:
Redefining Fine:
https://www.amazon.com/Redefining-Fine-Journey-Self-Care-Unshakable/dp/1300976810
Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.
Let's Get Started - Rare Patient Voice
Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website:
https://myspooniesisters.com/
Discount Codes:
GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off
Welcome back to my Spoonie Sisters, season 5. We're kicking things off with a heartfelt real-talk episode for anyone who's just heard the words. You have a chronic illness. Whether you're feeling overwhelmed, confused or just downright scared, this episode is your survival guide. We've been there and, trust us, you're not alone. Today, I'm joined by two of my favorite co-hosts, andy and Lenia, to share what we wish we had known when we were first diagnosed. From navigating appointments to facing down Dr Google, we're getting honest about the fears, the flares and the foundations of finding your new normal. Let's dive in with some questions that might just answer what's been swirling through your mind since diagnosis day. Ladies, hello, hello. How are you doing today? Hello, hello there Spoonies. Long time no see, at least. Well, more like long time no hear for listeners.
Speaker 3:Well, a little bit of both, because they get clips right. So it's both long time no see and also long time no hear. It's been like a month of Sundays since the last time we got to chat with our fam. But first, can we just get into these earrings? Okay, because all of them. Because the thing is, these are clip worthy earrings. So let's just get into these earrings. I just need you guys to notice that today I chose thermometers. Why? Because we're in the midst of a heat wave and it is insanely hot. For no reason, last night at about 11, it was still 92 degrees. I don't live in Arizona. I didn't sign up for that Abnormal right. Abnormal right Random in Virginia, and I found myself at about midnight asking myself how did we get here? Why is it 90 degrees? Why does my upstairs? Why is it 78, but the thermostat set to 70? It wasn't good for hot flashes. Guys, jen has on some cool earrings.
Speaker 1:I have some made by the one and only Jewel. For anyone that knows her. I actually put these on facing the same direction, but they keep flipping. So you've got my Spoonie Sisters on one side and my face on the other.
Speaker 2:Mine are made by Jewel. It's got the semicolon butterfly but I did put them on the other way where one of each showed. But you can see the butterflies were shown but the other side is imperfectly perfect. I'm just glad I have cool earrings like.
Speaker 1:Andy. Now, andy, you touched on something quite interesting. You mentioned a couple of key words that have to do with what season five has in store. You did, you did I don't even realize yet, because yesterday we were discussing segments. We're having different kinds of segments this season to keep people on our toes and you mentioned something really, really important, did I say how did we get here?
Speaker 3:listen guys, you guys are in for a treat because and Andy has a lot of how do we get here? Moments she does, andy has a lot. How did we get here?
Speaker 2:I thought you did it intentionally. Actually season five, but it was.
Speaker 3:No, genuinely trying to figure out how we got here. And so, guys, that's a good segue. The thing is, if you are looking to try to figure out how you possibly got there, this season we're bringing so much fun stuff. We are introducing the segment how Did we Get here, where you can anonymously submit scenarios and your Spoonie sisters will give you whatever type of advice we may have about your scenario, which most likely may end or not end in Andy saying, well, how did we get here? But we're going to try to collectively help you find a way out of however you got there.
Speaker 1:I'm excited. I have a challenge for the three of us too. I challenge us. I think we came up with mine yesterday, but we're not going to talk about that again today. But I think we are each going to share a how did we get here? Story of our own, absolutely. I do that every day, every single day.
Speaker 1:We have some good ones, I know we do, I'm going to try to keep us on task, so I'm going to dive right into our first question. Okay, andy, I'm going to start with you. What do you remember most about the moment that you were first diagnosed? I know that's kind of a hard question, because you've been diagnosed with multiple things, but pick one, I guess. And was it a sense of relief, confusion, or a little bit of everything?
Speaker 3:Okay, the moment I remember most about when I was first diagnosed. Well, I was at PT and we were playing ultimate Frisbee and I collapsed. I collapsed because my kidneys were like ha ha, we don't want to do this. And so, prior to that, it was all in my head not, it's lupus. And so when my kidneys started failing and I collapsed, when I was in a German hospital, he says to me, after running labs and sending all the people in, you know, you got lupus.
Speaker 3:Now, prior to that, it was like years and years of there is nothing wrong with you, although my lab said there was clearly something going on. And so would I say it was a sense of relief. Hell, no, andy was pissed, and she was pissed for many, many, many years, like double digit donkey years. I was angry and it's because I felt and I still feel this way. Had they listened to me the person who walks all day, breathes in this skin suit when I said, hey, I don't feel well and this is going on, I would probably have felt relief. But for me, I didn't actually feel any relief until after my heart attack, because people started listening. Yeah, unfortunately, it's not a fluffy, happy answer. I didn't feel any relief until five years ago because people started listening. I'm literally the CEO of my body. I live here in this skin suit.
Speaker 3:I would think I know what's happening in my body, but a lot of the times in my situation it wasn't until tragedy struck, something horrible happened. Then they were like, oh, remember that one time you came in with this complaint you were right, but it wasn't until a drastic decline happened Meanwhile. I knew it was happening and said, hey, this doesn't seem right. So it took years, a lot of confusion in the years up to them, putting a name to it not because of the diagnosis confusion Am I literally making this up? And not relief, honestly until I found ways to holistically deal with it. So I wasn't always over-medicated. So I didn't get relief until about five years ago and I didn't get anything other than anger until about five years ago. How about you? What was most about the moment you were first diagnosed?
Speaker 1:It was a sense of relief because I'd been waiting a year and I mean I've told you all my story many times and for listeners, maybe you know, maybe you don't know, but it was quite a journey. I had been seeing a doctor in another city that just kept handing me these pamphlets about lupus and RA and other things. It was like, okay, you're giving me medication but you're not giving a name to it. And now I understand that better. I know that they are working on narrowing things down. They really actually need more information and sometimes that information takes time. I understand that now.
Speaker 1:So I guess that's my advice to listeners is try not to get angry, like I did and like a lot of people do, because sometimes the answers aren't going to come right away. I know that's frustrating, but hopefully your care team is trying their best to help you and if they're not, keep fighting, keep standing up for yourself, keep asking for more tests or whatever it is you need to do. I finally had to fire my doctor and once I saw my new rheumatologist I walked in. That very day he looked at my labs, he looked at me and he said you have rheumatoid arthritis. Very day he looked at my labs. He looked at me and he said you have rheumatoid arthritis. I don't know why we've been dancing around an answer this is what you have. And I left feeling hopeful that would be my answer. I was hopeful and relieved.
Speaker 3:Hopeful is great. I love that, Linnea. How about you?
Speaker 2:I. When I first was diagnosed, the doctor kept flip-flopping back and forth for me too, like from fibromyalgia to RA, to lupus, like all of them, and it finally took me firing him because he kept ignoring my symptoms and wouldn't give me medication or up medication. He just wasn't taking care of me. I actually went to a new rheumatologist as well, and that first appointment he's like we're going to do this and this and this. You have RA, I can see it here, I'm going to confirm it with this test. But I did not walk out of there feeling hopeful. I walked out scared. I walked out fearful because I had watched my mom take this journey before me. Out fearful because I had watched my mom take this journey before me. At the time I did not realize the amount of medication that comes out for us, so I had it in my head that I only had her options and I didn't. So once I figured that out, once I found the right people to help me, from nutrition and everything, it's made a difference. But I'm finally feeling hopeful.
Speaker 3:I love that. I love a good hopeful moment. I feel like we all deserve it right. Once you hear the, you have the thing we all almost immediately go down the Dr Google rabbit hole or the WebMD rabbit hole because they tell it to us but not give you all of the information or what that looks like, and sometimes we get the worst case scenarios right. Hopeful is the best outcome for what we deem to be the worst case scenario when we get the information. So what's something that you wish that somebody would have told you early on, like for you when your mom was going through it, and then now you going through it, what do you wish that you knew?
Speaker 2:I wish I would have done more research when she had it to help her. But I also wish somebody would have said there are options for you. You're not going to lead the life your mother had because of RA. I wish somebody would have spoke up and said we have tons of options. If this doesn't work, we're going to try this. And it took me several years to find a doctor that would finally say that. But I still had it stuck in my head and I've been working on that and I'm finally getting to where it's okay. But I wish somebody would have just said don't give up. There's always a new option. They're always coming out with new things to try for us. So that would be my answer to that. What about you, jen? What would you wish to know?
Speaker 1:I think for me it would have been. This is not your great-grandmother's disease. I heard all the stories about my great-grandmother. There weren't treatment options. Here's your ibuprofen, good luck. That was the options, and I was always told about her, saw pictures of her in her wheelchair. My mom told me that she always purchased canvas shoes and would cut holes out in the sides where her bunions, where her nodules and all the damage that was done to her toes. She would cut holes out for her feet and they talked about her knobby fingers and all the contorted joints.
Speaker 1:I thought it was an old person's disease. Many of us did right. You hear the word arthritis you automatically we can't help it. I mean, obviously we're educated and we know now, but in those early years we don't know that and so it's not my great grandmother's disease. There's options. I can still hopefully live a seemingly normal life and I don't know about you guys, but I feel like we kind of sometimes do. It kind of is a little roller coaster, but we have those days where we feel semi-normal, whatever that I don't know if I'm normal even without being ill.
Speaker 1:So normal is what is even normal yeah, maybe that's not even the right word, but live living and feeling like ourselves again right, blendable.
Speaker 3:You want to blend in with the rest of society that does it. You want to live like you're actually not sick. You want to live like you don't look sick because you don't look sick. So you want to live like the ones who are not ill.
Speaker 1:You want to blame. I'm going to take that as a compliment. I don't look sick, you know you don't look sick.
Speaker 3:So what's your answer, andy? So again, andy's the weird one, right. Andy's the weird one because Andy knew, right, and in my case, because I was a nurse. Andy wishes that she didn't know as much as she knew, because then I wouldn't have been as frustrated as I was. I wish that I could have been completely oblivious and it literally just been. They're trying to figure it out. But Andy knew, and she knew what things she needed. She just wasn't getting the help.
Speaker 3:Now I think that in my what I wish I would have known outside of the care portion, I wish I would have known more people that at the time I was going through, was also someone that can support me. I wish that I had community then, because I probably wouldn't have spiraled into depression. I wish that there were more people that looked like me, that were chronically ill, but invisibly ill where it wasn't. It's all in your head. I think that that would have changed my anger cycle a lot, because I wouldn't have felt as isolated, but because I did know the information.
Speaker 3:I think the biggest element that was missing for me in my diagnosis journey was literally community and again attaching it back to the happiest, worst day of my life, the worst, best day of my life. I didn't find community until the heart attack. You see what I'm saying, and so I think God uses certain situations in my life particularly to go. Hey, maybe you needed a pause, and I get that you're frustrated, but let me just show you that there are people like you 16, 18 years of living chronically ill, self-isolating, and so I encourage people please find community, find sisterhood and brotherhood, so that you don't spiral in self-isolation. It can become very dark, but you don't have to carry it by yourself self. There is someone that's in your shoes, that has walked the path before you to make it a little bit easier on you if you ever have to go through it or as you go through it. But I think the biggest thing I wish I would have had was community.
Speaker 1:We have a tendency to live on an island. It's safer there, protecting ourselves from being hurt, from feeling like we're not heard or understood or feeling judged, but we are so not meant to live on that island. We were created to have community and friendships, and support.
Speaker 2:Sometimes we get so deep into our chronic illness that we can't see past the island. We can't see what's beyond that barrier, those walls that we put up. I mean, you both know I am one of the biggest hiders and it's hard, but I'm telling you, if you're listening and you're a hider and you like to go hide away in a dark room like I did, no, it's really safe out here and it's joyful and it's happy and you will find the community out here. You will find the right community for you, as we did. Don't be a turtle.
Speaker 3:Turtles are so cute, but also, I mean, it's so dark. Yep, get out your shell.
Speaker 2:And listeners these guys have brought me out of my shell and I'm telling you, if you listen this season, you're going to see how you can get out of your shell. And listeners these guys have brought me out of my shell and I'm telling you, if you listen this season, you're gonna see how you can get out of your shell as well, and I'm you won't be disappointed did you say if you listen, you mean when that is something we are working on, still andy me saying yes instead of we.
Speaker 2:We will do it. So everybody knows. Now I say if, instead of yes, we're going to do it, because I second guess everything.
Speaker 1:When you listen and when you come back, you are going to be filled with support, laughter, community and so many good things ahead, so many good things ahead. I'm going to move on to our next question. It's how did you handle the flood or sometimes the lack of information from your care team?
Speaker 2:That was hard for me, because there were times where I didn't realize I was lacking in information, because I didn't even know where to begin to get the information, because my first rheumatologist I didn't even get a pamphlet about RA. I was just handed here's your diagnosis and here's a prescription, nothing else. So for me I had to be careful about going down a rabbit hole of Google because I was lacking.
Speaker 3:It was a rheumatologist, Wait a rheumatologist didn't give you a pamphlet. That's wild to me, so I'm going to share just another wild piece about this doctor.
Speaker 2:His practitioner nurse went to him and said you need to come, look at her. This is not fibromyalgia, this is. There's something going on. And he refused to leave his office. He said no, it's just a fibromyalgia fetal layer. And she came back into the room and you guys all know sometimes they're not supposed to do certain things she goes.
Speaker 2:I think in your best interest you need to research other rheumatologists. I will continue to see you until you can find one. Because she knew there was more there than what he was willing because of my age at the time I was about 30 and everybody else in his waiting room was in their 70s and 80s, yep, and he. So he didn't give me anything. So I literally was on this island again by myself, no information. All I knew about RA was what I knew from my mom, which is different, like there was more information. So I went down a rabbit hole and I had to stop myself because it was not healthy.
Speaker 2:But my new rheumatologist when I finally seen him, he started handing me information, he started getting. So that's the importance. I want to say is fire your doctors if you're not getting anywhere. I want to say is fire your doctors. If you're not getting anywhere, if they're not giving you pamphlets when they diagnose you, right then and there, find a new doctor. Stay with that person until you can find a better one, but don't stay. What about you?
Speaker 3:Andy. So how did I handle my flood of emotions? As I told you that, there was a lot of anger involved. So I did a lot of rage rooms, I started my meditation practice and my breath work and EFT tapping and I literally I had to dig myself out of the spiral that had happened. I know that the Internet can be your worst enemy, but I started for everything that they told me, everything that we're going to give you this medication. I instantly went OK, how can I holistically do this? If there's a medication, there's a food, if there's a medication, there's a food, and I know that at least it could be complimentary to whatever medication regime I have to be on right.
Speaker 3:So, whatever that looks like, maybe the things that I'm eating is expediting how I feel like crap, and I started to dig into what types of things am I eating for real? And although that they were healthy for me, my body didn't like them, although they were deemed healthy foods. There were certain vegetables that I couldn't eat because it made me feel like crap. It was certain proteins that I couldn't digest and all kinds of things, and I realized for me it was layers to this right, and so I sat down and I sat with me. Let's start to digest the layers, the things that I can control. Like I can't control what the doctors think and they can think that I'm crazy, but I know that I live in my body so I can control the layers. And I started controlling my layers by controlling my gut. But as I started cooking things my stress level kind of you know it got a little bit lower.
Speaker 3:I researched holistic angles to the diagnosis that I had on paper, because in my mind I knew we didn't always have medications but we've always had some illnesses, right, and for my family I know that there were family members of mine that had autoimmune diseases that didn't have access to care and they lived a very long life, very long life into their eighties and nineties, with no access to care because they didn't have those things then. Right. But I also know that they ate differently and I wanted to know what that felt like. So I started on me. But I worked through my mental hurdle. I had to accept it. I had to accept it was my diagnosis on paper. But just because it was that on paper didn't mean it became my life and my truth.
Speaker 3:Once I decided that all of the information or lack of information that was making me spiral didn't actually mean that I couldn't go and do all of the things that I had been doing prior to, when they put a name to the thing that I had been feeling all along. I sat with that, because we stop living the minute we get that thing. That sounds scary, but we were living all the way up until they put a name to it, and so when I process my emotions in that way, I had a very full life. I might not have been able to do things much, but I was still enjoying my life, sick or not sick, I was still surrounded by love and all the things, and I was still out there doing things. I was frustrated because I had to do them differently, but I was living. I got my diagnosis and I turtled and I stopped living All of the things that they told you you could no longer do.
Speaker 3:I believe that to be true until one day I decided I want to try to do it and I still could. Then that anger comes back. You can still do this. What are you doing? Okay, but yeah, I was intentional about giving myself another perspective. I was very intentional about there is a different perspective and I'm choosing the dark. How about you, jen?
Speaker 1:I just have to say that's a lonely place.
Speaker 3:It's very lonely.
Speaker 2:Yeah.
Speaker 1:And it breaks my heart that so many of us have been in that place.
Speaker 2:Yeah, but that's why we're here is so to find those people that feel like we did, so they don't have to go through this alone. I think that's why everything like this episode and the coming episodes are about this season is really making that connection with our community even tighter and closer, so these newly diagnosed future friends of ours and Spoonies will know they're not alone and maybe they won't turtle as long as I did and as long as you guys did. I hope one person, if one person, hears this today and knows they're not alone in this and goes okay, I can do this today.
Speaker 1:Absolutely, absolutely. And how did I deal with the flood of information? I became obsessed. That's the best way to explain it. I became obsessed.
Speaker 1:There was one person that I found. There was an account that I came across and she was big in the RA community back when I was diagnosed in 2012. And she was working hard and I would see her down in DC fighting for us. She wanted to get the name changed from rheumatoid arthritis to rheumatoid disease. Oh, her name was Kelly. I can't think of the last name but Kelly. If you look up rheumatoid disease and Kelly, I'm sure you'll figure it out and find it. But I went down the rabbit hole of following her blog, her Facebook, all of that, and I was obsessed because I wanted all the information.
Speaker 1:But some of the information I got along the way was not correct information and so I lived in this constant state of sickness and fear, and that's not healthy either. It was a perpetual cycle that I now look back and I feel like I went about it wronged. I got angry a lot with people. In another episode that people are going to hear, a friend of mine was trying to talk me into juicing because she was convinced juicing was going to heal me. No, maybe it's good for you, but it's not going to take the RA away. And so it was this anger of why aren't people listening to me? Why aren't people getting it? Do they not take me seriously? Do they not believe this is what I have? It was just so much of that. I don't think I dealt with it at all or in a healthy way. It was just constant research, fear, frustration that's my answer.
Speaker 3:So I just want to pivot for a second and I want to talk about something that I think we all go through at some point in time in our chronic illness journey. Did you ever feel like you had to prove to people that you were sick?
Speaker 1:Absolutely. I constantly felt like I was not believed. I constantly felt like I had to prove myself, and I think that's part of why I was doing all the research and the reason why I reacted the way I did was because I felt like I had to prove myself. So, yeah, absolutely, I did what?
Speaker 3:about you. I think that I still have moments where I have to prove a very, very real reality. For me, just because I don't look ill does not mean I'm not ill. And so you guys know, I coach like high school sports and I train high school athletes. And I have days where I wake up and my vision is not always that great or I feel a little bit off and so I can't do things how I normally would do things, and so I'm a little bit slower in my responses or my movements and they kind of are reminded then that coach is just a little bit different, right, there's times where I have to sit down and they're just kind of reminded that coach is a little bit different. Right, there's times where I have to sit down and they're just kind of reminded that coach is a little bit different. But I think there are several spaces that I go into. When they hear that I'm blind and deaf, they go. Oh, we didn't see that coming. When they hear she had a heart attack at 40, they're like, oh wait, no way. And chronically ill, they go.
Speaker 3:But you don't look sick. It makes sick. It makes you stop and think a lot about what sick really looks like right, I don't look sick. In whose eyes? What does sick actually look like? Because sick doesn't always look like you're on your deathbed, and for me now, sick looks like joy. Okay, I may not be able to skip for miles, but I'm out here cartwheeling and skipping, so to speak. You know how. About you, linnea? I?
Speaker 2:have and because they've seen me do all this stuff like work all week but by the weekend comes I can't. I didn't have energy to do anything because I had used it all up pushing through work every day, proving you didn't have time to do something with us. But you could go do this. I know they didn't mean it to hurt me, because it was a past hurt that they felt, and if they would have just brought it up and maybe they wouldn't have understood.
Speaker 3:Well, the question, though, is with that comes frustration. Right, how did you navigate it then? And are you navigating it differently now, like, what things did you pick up along the way? Because we all go through the layers of frustration. So what helpful things did you pick up along the way so that you'd be a little less frustrated?
Speaker 2:I'm learning how to de-stress more With that situation. I felt like I needed to apologize for them, thinking I didn't want to spend time with them and did something else. But at the time that's how I was coping. Now I'm different. If I want to do two different things, I have built in time in my schedule to rest so I can do more things. So I, so I can live more, so I can be, so I can be me.
Speaker 3:I've apologized a lot. I'm sorry I hurt your feelings. I know you were looking forward to doing this and it's not that I don't want to do things with you. Is that my body's not going to allow me? And because I don't look sick, you don't actually quite understand what that means. I don't have the energy to do it. So when you hear, don't forget your spoons, my spoon drawer empty. All my spoons are in the dishwasher. I can't do it. And I had to get to a point where I understand that and I honored how much flatware I had left in my drawer. Sometimes all I had was knives and I was throwing those daggers at people and I shouldn't have been Right. And then I had forks.
Speaker 2:Yeah, at that time I couldn't explain, I think for newly diagnosed I wasn't newly, but I still had troubles explaining how my energy worked, how things happened. So I think that you know it's just I feel guilty for hurting somebody and I never want to, you know.
Speaker 3:Because you're looking at everybody else, move off fluidly and you're like you want to go have a good time and it'll be a great time for you. It'll be miserable for me and I will be going because it brought you joy and I don't want to upset you. But you also don't quite understand. This is going to put me down for a minute and I'm not going to have joy, but I will sacrifice. Essentially, you want me to sacrifice my being for a moment of joy. That may take me down for some weeks.
Speaker 3:I didn't always have people that understood when I was like I don't have the capacity. Now we could do anything else. That's like low threat to my body. If you want to sit and hang out, watch movies, you want to read books, you want to do some crafting, we could sit somewhere quiet where I'm not in sensory overload. But the activity that was going to be me overly exerting, I can't do it. But I'll gladly take a rain check. My guilt came from the last minute cancellations when I had to do that to people I knew. I said I was going to do it. I told you I was going to go a month ago and then the day of I'm like whoa, hey, flair, nice to meet you, right, and I feel bad that I had to tell you on the day of I know that we said we were going to do this, but I can't.
Speaker 3:Early on in my chronic illness journey, my friend group didn't always understand, or didn't understand. More often than not they didn't understand. I was literally referred to as the flaky friend. Now, was that fun? No, and then that one time when I died. Then they were like oh, you're sick, right, I'm not the flaky friend. You just couldn't see what all was happening and I didn't tell you. Right, I really do want to be there with you. I just don't always have the capacity to do that. When I started honoring that, I didn't have the capacity to do that. My relationships dynamics changed and people could show up for me because I wasn't in my turtle shell. I'll deal with it by myself. You won't get it. Leave me alone. You won't even understand.
Speaker 3:When I started coming out that turtle shell hey, this is what's going on I realized that people started to research to understand so that they could offer something other than. How about this green juice? Or if you just intermittent fasted for 21 days, you won't have RA anymore. Your lupus will go away If you mix these herbs from some random place in. Wherever it's coming from, it's going to cure all of the things, and you just got to take like three sips of some castor oil. I've heard some really random things of the how to heal myself. All have laxative effects and so I don't feel like my autoimmune disease is going to come out of my rectum and so I won't be listening to that advice. And you're probably wondering, andy, how do we get here? I don't know, and you're welcome. So there you go. Wow.
Speaker 2:I loved it. I like it being me, but you're right, you're right. That's all I can say about that.
Speaker 1:I think that needs to be one of our how do we get here? Episodes. Okay, no matter where you are in your chronic illness journey, whether you're newly diagnosed or years in this community is here for you. You are seen, you are heard and you are not doing this alone. Make sure to share this episode with someone who's just starting out and, if you haven't already, follow us on Instagram at MySpoonieSisters, for daily tips, laugh and love. Of course, come back for part two and don't forget we have some books available, but we'll talk about that next time.
Speaker 2:Right.
Speaker 1:Yeah, we will yes we will. All right listeners, until next time. Don't forget your spoon.
