Elevator Pitches from your Spoonie Sisters

Crafting the perfect elevator pitch isn't just for business moguls—it's a vital tool for anyone navigating life with a chronic illness. Imagine being able to communicate the essence of your health journey in just a few sentences. That's exactly what our latest episode explores, featuring remarkable insights from Jen, Ali, Andi, Linnea, and Megan. Ali inspires us with her journey as a personal trainer who did not let juvenile rheumatoid arthritis slow her down. Andi, who is both blind and deaf on one side, reveals the significance of concise, clear communication with healthcare providers. Meanwhile, Megan, a fitness coach with rheumatoid arthritis, shares how she defies limitations to pursue her passion.

We tackle the often invisible nature of chronic illnesses and the misconceptions they breed. Through poignant anecdotes and actionable strategies, our guests reveal the power of having a strong, succinct narrative to advocate for oneself. From navigating awkward gym encounters to educating others with grace, our conversation showcases the importance of being prepared with a well-crafted story. We even discuss the merits of using creative tools like business cards to reinforce these messages in everyday interactions.

Laughter and resilience take center stage as we discuss how humor can lighten the load of chronic illness. We emphasize self-care through affirmations and the healing power of a supportive community. Sharing personal stories and quotes, we remind listeners that strength and joy can be found within, even amidst life's toughest challenges. By the end of this episode, you'll feel empowered to embrace your journey and equipped with the tools to communicate it effectively, fostering understanding and connection in the process.

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

🎙 Living with a rare disease or chronic illness can feel isolating—but you are not alone. Find Your Rare is more than just a brand—it’s a movement. From empowering apparel to real, raw conversations, they’re here to remind you that your story matters. Because being RARE its your superpower. Explore, join & wear your rare with pride at FindYourRare.com

Chapters

• 0:00 Crafting Elevator Pitches for Chronic Illness
• 8:59 Navigating Communication About Chronic Illness
• 22:05 Mastering Elevator Pitches for Chronic Illness
• 29:15 Finding Humor & Strength in Illness
• 35:55 Empowering Affirmations for Chronic Illness

Transcript

Jen: 0:08

Welcome back to my Spoonie Sisters podcast. Today, I'm joined by an incredible panel of powerhouse women. Each of these inspiring individuals brings their own unique perspectives and experiences in the chronic illness space. Together, we're diving into a topic that's crucial for many of us the power of crafting an elevator pitch for our health stories. Whether it's explaining your condition to new health care providers, advocating for yourself in the workplace or connecting with someone new in your life, having a clear, concise way to share your story can make all the difference. We'll explore why having an elevator pitch is important, what key elements to include and how to tailor it for different situations. Plus, our amazing Spoonie sisters will share their favorite tips for creating one that feels authentic and empowering. Hi ladies, hello, hi, hello. Thank you all for joining today. I'm going to call on each of you, one by one. I'm going to start with you, allie. Allie, do you feel like you have an elevator pitch put together?

Andi: 1:15

You know, I think I do. I think so. I mean, I've been talking about my chronic illness for what? 16 years now, so I probably can throw one together quickly. Yeah, look like for you. Would you like me to say it? Absolutely Okay, okay, guys, don't come for me because I am literally going to pull this out of nowhere. But yeah, so my name is Ali DiGiacomo. It is a hard name to say, but my name is Ali DiGiacomo.

Andi: 1:36

I was diagnosed with juvenile rheumatoid arthritis at the age of 15. It is an inflammatory chronic illness. It's not to be confused with osteoarthritis, with old knee syndrome, you know, but I have been dealing with this for 16 years. I like to call myself the arthritis auntie, and it has changed my life for the better. I became a personal trainer because of it and I tried to prove to other spoonies that we can move our bodies in a fun, safe way, regardless of limitation, and I also bring awareness online as well. So that is me in a nutshell, and, as hard as it is, I am grateful for the community that it has brought me, because all of my closest friends struggle as well. So that's me.

Jen: 2:19

I can look for something inspiring. If I'm having a rough day, I can look for Allie and watch her drinking coffee and shaking her ass. She's going to motivate me and she's going to crack me up along the way as well. Allie, thank you. I love your elevator pitch. Andy. Tell us yours. I bet it's single.

Ali: 2:46

So my elevator pitch is full of dark humor, but it's my story, so it's true. I tend to tell people hey, I'm Andy, I am blind and deaf. One time I met Jesus. I have arthritis, I have MS, I have lupus, I have a lot of things that don't define me, but I don't look sick. I can probably skate circles around you. It took me forever to get my diagnosis and my job is to make sure it doesn't take you forever to get yours. When I'm in doctor's offices I go.

Ali: 3:15

I know that I have to tell you these things, that you probably didn't look at my record, so let me give you the cliff notes. I am blind, I am deaf, we have done all of these things. I am a veteran and these things probably led to the reason why I am blind and deaf now and I would prefer to not go through another 16 year circle. So I'll give you some time to review the things that you need to review and we can reconvene where disappointment is. In some resolution I'm typically straightforward, but I do lead with I am blind and deaf. So if I go home, can you please repeat that? Can you talk to me in a way where you were talking to me and not at me, and I appreciate that as well, because I don't look stereotypically deaf and I don't look stereotypically blind. I spent a lot of my day reading lips.

Jen: 3:59

That's exactly it. None of us would ever know. I didn't know for the longest time, wouldn't have had a clue. Andy, what I love about you is, if I am ever having a super anxious, horrible day, all I have to do is talk to you and within five minutes I'm at five minutes, I'm at ease, I'm comfortable, I'm calm. I don't know what it is, but she needs to have like I don't know your own podcast of calm and wellness. I don't know. We all need that in our lives and that's what Andy brings to my life. Megan, I am so excited to hear your all day. Yeah okay.

Linnea: 4:31

So hello am megan. I have had rheumatoid arthritis for about nine years and rheumatoid arthritis is an autoimmune disease. It is not like your normal wear and tear arthritis, because I feel like so. So many people who don't understand confuse the two, so I usually throw that in there. But overall, I am a fitness coach for people who struggle with arthritis and chronic joint pain, because I had to pretty much revamp my entire fitness journey when I was diagnosed and had to really make it fit for my body, my needs, my limitations. My goal is to show people that you don't have to give up.

Jen: 5:19

If you guys have not checked it out, she did powerlifting. This girl is strong, as in muscles strong, so yeah, go check that out First. Megan is my whole positive mindset guru. I can't believe that it's been like a year and a half that we've been doing that support group. Now it's crazy. And there's Lenia Are you ready?

Megan: 5:38

Yeah, yeah, hello, my pitch. When I go into a doctor, especially if it's a new doctor, I tell them my name, I pronounce my name, I say Lenia as my first name and I say, nicely, the K is silent. I explain my name because they will butcher it. I'm sure you ladies understand that. But I also tell them I struggled with joint pain since high school without a diagnosis, until I moved to Arizona at 30 years old. I let them know there were years I didn't have any diagnosis, I just was on prednisone a lot and I didn't want that. That was my first thing. I told to tell them I explained my heart conditions. If they don't know what RA is, I explain what it is, because I have come across doctors that don't understand what it is. But yeah, that's kind of. I hope that answered. I'm a little funky.

Jen: 6:25

That's okay. You've got the flu. We understand Just the fact that you share. That is amazing Fun fact for you. Lenea was my first guest on the podcast. It was during that conversation that we found out we both had the exact allergic reaction causing the pustular psoriasis.

Megan: 6:43

I thought I was like on this desert island out here, until Jen walked in and told me that happened to me. I realized I wasn't alone.

Jen: 7:04

My doctor was floored that I actually met somebody that it had happened to. She's made life a lot easier. We put ourselves on an island because then we can't get hurt and it's like a safe place, but it's lonely too and we can't live there. I could easily go on a tangent and have us go there, but that's not what we're here for. We are here to give some tips. Raise your hand if you want to jump in on this. My first question is why do you think it's important for people with chronic illnesses to have an elevator pitch prepared to share their health stories?

Ali: 7:35

Andy, I'm ready for you. Okay, so there's several reasons, right, but I think that it's empowering. I think that when you walk in owning your story and owning your diagnosis, it's empowering. It allows you to articulate what your body is going through versus what they see of you, because you may not always look sick, but I think that in having the elevator pitch and in sharing your health story, as personal as it is, it helps other people. It contributes to their healing, it contributes to the education of the provider that's going to be treating the next person. But it is also a way for you to advocate and continue to advocate for you on your behalf and on the behalf of the people that will follow you still trying to get their diagnosis.

Ali: 8:17

I think it's super important. I would much rather have the elevator pitch than people stare and have questions that they don't want to ask or come up with their own conclusions or assumptions. But especially kids, right, they want to know. But I would much rather have the conversation so you're educated and you can become part of the super advocators. Then you think it's something you use that as a way to belittle or hurt someone else's ceiling. So I think that the sharing of the stories, especially from people who don't look sick, makes the generation behind us a little bit kinder with their word choice and a little bit more grateful that they can function in the bodies that they have, even if it's for the right now moment, before they hit their prime, you know.

Jen: 8:59

I agree. Does anyone have anything to chime in on?

Andi: 9:01

I mean yes to everything Andy said oh my goodness. But also, you're going to be talking about your chronic illness a lot. I've had it for 16 years and it comes up all the time. Like Andy said, it's very important to have your elevator pitch to explain it, because a lot of chronic illness you can't see, like invisible illness you can't see.

Andi: 9:20

So it's really important to educate everybody and just get it over with like right away, like this, this, this and this, so that they don't have to you know, like Andy said, ask questions. They can ask questions, that's fine, but they don't have to assume what's going on with you. But yes, you're gonna be talking about it all the time at the workplace with friends and family, on podcasts. You're gonna be talking about it on social media at the gym. So it's really important to have it because it's gonna keep improving and I bet you anybody if you ask any Spoonie, they probably already have their elevator pitch because they are so used to talking about their chronic illness. So it's great to just have it in your back pocket ready to go.

Jen: 9:58

I agree with both of you so much. I think the first time I ever heard anything about this kind of thing was actually before I got sick, and the reason I heard about it was from my sister-in-law. I think some of you know, but I don't know if all of you do, but my niece was born in 2009 and she was terminally ill with Tay-Sachs disease and as she got older she was deaf and blind and my sister-in-law could not go to a store without these people coming up to her and saying the stupidest things Talk about foot and mouth, walking up and being like poor dear, she looks tired, you're wearing out your poor baby. No, actually she's deafblind and dying, but thanks for being a jerk. It got to the point where she actually made a business card telling people what Tay-Sachs was and about her daughter. She would hand it out to people when people would come up and say those stupid things and talk about a change in the way they talk to you after that, if you're not comfortable talking about it, make a business card, make a flyer, make a handout, whatever.

Jen: 10:56

But do something. Don't just stand there and let people talk to you like that. I mean it. Just it goes along with how I'm always telling you it's okay to fire your doctor. It's okay to just tell people who to buzz off or educate them. Take that moment to change their minds. The educate them. Take that moment to change their minds. The next question I have for you what has been your personal experience in communicating your health story and how has having an elevator pitch helped you? Who would like to talk? Oh, Megan.

Linnea: 11:24

So honestly, I kind of like yes to everything that everybody said in that last question like hit the nail on the head One hundred percent. Said in that last question, like hit the nail on the head 100%. I really wish that I would have worked on having an elevator pitch when I started going to the gym again, Because it's when you are young and you look healthy, because obviously the RA is invisible, people really assume that you can do a lot more than you can. So whether I was training at the gym and somebody made a comment of me not doing as much or not like working out with the client, or if I got comments saying, oh, you should be doing this instead of that, or why aren't you lifting heavier, which is so frustrating? Yes, Allie already knows what.

Jen: 12:34

I'm sorry, you were lifting like crazy. So why in the world were they asking why they could lift more?

Linnea: 12:42

I don't know. Well, this more happened before I started lifting heavier, when I was dealing with a ton of pain and flaring. I think that had something to do with it. Well, it's kind of funny, because when I started lifting heavier, I actually got an older gentleman to come up to me and tell me to lift lighter. I don't know. I don't know why people think that they need to assert their opinions regardless. But I always tell them that I have rheumatoid arthritis and I make sure to tell them that it is an autoimmune disease, that way they don't confuse it with osteoarthritis, which happens all the time, because then they start saying oh well, this works for me. I have arthritis in my elbow or I have arthritis in my knee or you know that kind of thing, yeah. So I wanted to throw that out there in case any of you can relate, or because it's so frustrating and that's where I needed it the most.

Ali: 13:35

So yesterday I was at the gym and it was the same thing. It was like the dumbest question ever. And then they were like and you're doing it wrong. But then I watched them get on the squat rack and you can't functionally move your body weight. So before I left the gym I was like I walked past the rack again. First off, he had all of his weights there, but he was having a whole conversation with somebody over by the lap pull down. And that just really poked the bear, because I'm trying to get some gains and leave Right.

Ali: 14:02

And so I go to the squat rack. You're clearly not here. You're clearly the jerk that didn't want to re-rack your weights. I don't care. He says, oh, it might be a little bit too heavy for you, honey, right. I said, oh, this little 45 plate, that's cool. One arm down, bam. He's like I don't want you to hurt your back, john, you're not functionally moving your body correctly, but it's okay. And he's like I guess you watched a little Chloe Ting's fitness or that Pope to bear you no more.

Ali: 14:30

I said, wow, we're trying it today and I have time, so, whatever, as he was saying that one of my youth athletes, one of my track athletes now in college is across the gym. It's like, coach, you good, comes across the gym, gives me a hug. He was with those idiots, right, but didn't know that I had just had that conversation with those idiots and then so they go coach. He was like, yeah, she's the reason I got into college. She's strong, she's strong as hell.

Ali: 14:53

You just don't know it. Don't let the baggy hoodie and the small, the timid voice and the doe eyes, the Disney eyes, make you think that I cannot pick up heavy stuff and put it down, that I cannot fling you across this gym with my legs Maybe not with my upper body, but I can fling you through a wall with these legs. I don't look sick, I don't wear it as a label, I'm not like hey, please pity me, I am a woman that is trying to do the best he can do in my body and prefer you to not be taking up my time having a conversation by the lap. Pull down, do better, do better, so you can be buffered because you're not buff for real. So that was my gym experience yesterday.

Jen: 15:29

And Allie's over here excited and dancing and cheering you on, and I'm over here going. Wait, he called you honey. There is nothing that pisses me off more than somebody coming up to me and calling me sweetheart or honey. First of all, you don't know me, you're not my husband, you're not family Back off, so let's not start there. That's not okay. I'm not your honey and they don't know us. I'm sorry, but every single one of you are extremely strong, extremely strong inside and out. You have something to chime in.

Megan: 15:58

I would, because I've had that experience. But at a doctor's office I had an orthopedic doctor tell me that I was just overweight. That was my only issue. I did not have RA, I did not have psoriasis. He told me all my issues was because of my weight, which at the time, the doctor I was on rheumatologist had put me on a ton of steroids, which if you know anything about prednisone, you know how they like and I was not getting better. I was getting worse. To have your doctor tell you, I walked out of there in tears, I do have to say. My primary fired him and he was no longer in his office any longer because of the way he treated me, because he goes.

Megan: 16:39

That girl has been struggling for years and you just sat her back because of your negativity. But that's the same thing we get out in public too, and it was hard for me to come over that because it was a doctor that said it, a doctor that accused me that it was all my own fault. That can affect you on how you talk to people. I didn't tell people for the longest time when they would make a comment about my arthritis If they said, oh yeah, I've got that arthritis too.

Megan: 17:06

Like I didn't say nothing until I started on Instagram and I found all you ladies. Andy Allie, especially, was one of the first ones I found and she liked her positivity and I'm well, I can do that too. It really changed, and being around others like you makes a huge difference. Especially it helps you build up your elevator story too. But it gave me the courage to tell everybody now even doctors that tell me it's my fault. I don't let them walk over me anymore. I use that elevator speech I've come up with and I didn't know that's what it was called, but it makes a difference having it in my pocket.

Jen: 17:44

Like you guys said, I couldn't have said it any better than any of you. So my next question and this is a really important one is what are the key elements that you believe every health story elevator pitch needs to include? I know you all have a top three. Okay, andy, you're ready.

Ali: 18:00

Freaking love this question when I read it. I freaking love this question because I feel like all of the elements are super important, right, so the brief description of what's going on, but in simple terms, because not everybody's going to understand it at the level that you understand it, how it affects you personally, how it may affect your personality, so your specific, unique experience, not your cousins, not Johnny down the street who had arthritis in his elbow. But then also the touch of positivity and resilient, because people here sick and automatically go to the I pity you. Look, your elevator speech should always have I am resilient, and here's a positive aspect. And then it should always have purpose. What was the purpose of you sharing it? So, ending your story with? I decided to share this with you because I wanted you to be more educated or because I'm advocating where I wanted us to be able to connect.

Ali: 18:55

But having those elements makes it less daunting to one, want to share your story. Two, easier for people to be receptive to hearing and seeing you beyond your diagnosis. Hey, he has this, but she could do all these things instead of you have this. That means you can't do this anymore because I got tired of that and I'm like hold on, I have this, but I can also do blah, blah, blah, blah, blah. So your elevation pitch should be I have this, but, and then sprinkle your rays of sunshine and resilience. Make it as dark or dark, humor or positive as you want, but be sure to highlight your resilience, because nobody's in these shoes but you, and it's tough to walk around in a body that fights itself all day.

Jen: 19:40

Absolutely. And look at how many amazing people in our community and what they're doing and they still are chronically ill. We've got professional dancers, We've got ballerinas All of you doing all this coaching, lifting weights. I wanted to do roller derby. I kind of wish I still had, but my husband was afraid I'd kill myself or break something important. But still we can do all these amazing things. Who's in our way? We are in our way.

Linnea: 20:06

I can't know how to necessarily tell the instructor that they do have these limitations that exist and they just kind of, you know, want that instructor to know which yes, you should always do that, but they don't want the instructor to think that, you know, oh, you probably shouldn't be doing anything or, you know, or just taking it way too easy on them.

Jen: 20:45

So that's kind of similar to how I tell them to tell their in-person fitness instructors just focusing on what you are able to do, even though you do have this condition or these conditions, yeah, and it's okay to go into the class and tell them that I've gone into yoga and pilates and said, hey, anything where you want me to be on all fours, that's's going to hurt. My shoulders are a mess, no thanks, but I can do all the other stuff. So just if you have ideas on how to adapt, please give them to me. And it's okay to say that If I have questions, I know I can ask any of you also. You're going to give me great tips. It's great.

Andi: 21:18

Anyone else want to chime in. I like everything everyone said I always talk about and I love adding positivity and dark humor into my elevator pitch, like I always talk about how I cope at the end, like how I cope with dark humor and I make funny videos on it. But also I love to say I just need to modify life, like I modify at the gym, like I modify daily things. So, yeah, I talk about how I have to just modify everything that I do. It's just I'm telling. I like how Andy said tell people why you're telling people this. It's always. I'm like I'm telling you this because I've taken many fitness classes where they didn't offer modifications. And it's another reason why I became a trainer, because we all kind of have to modify life and you can't just like judge a book by its cover. Baby, we got to modify. So I just love adding that in there as well.

Jen: 22:06

I want to have you think something over and mull it over in your mind If there's any quotes that you've either heard or that you've come up with on your own that you would want to use to inspire someone. So just kind of mull that over as we discuss question number four how can someone make their pitch concise yet impactful, especially when the details of chronic illness can feel complex?

Ali: 22:27

I know that's a biggie.

Jen: 22:28

And I threw two things at you and I think to make it impactful it means choosing your words wisely. It doesn't need to be a long speech, it can be two sentences. Just make sure you have all the important information in there and we can make it look different for different kinds of people. What I say to my family is going to be something different than what I say to a complete stranger. What would you think is something that makes it concise and impactful? Any tips for somebody, let's say, concise and impactful.

Ali: 22:57

I think it's important to focus on what's relevant in the right now moment In order to make it impactful. You don't want to overwhelm them with all of the thing, so pick the thing that is the most relevant in the right now moment. It can be overwhelming for the ear hearing it, where we list every symptom, every diagnosis and everything that we go through in our daily lives. And I didn't always understand that they go the blank. Look, it's because half of the stuff they're unfamiliar with. So, focusing on what's most relevant in the now and how they can help you in the right now moment removes so much frustration from both parties. You frame your thought in a way where you can highlight both the struggle and the strength, so that it is not she's having he or she's having a pity party, or please pity me for the lack of better words.

Ali: 23:45

I am struggling with this, but I'm also doing this and you can be part of the strength that helps me continue to be able to do this. So for me, I kind of tell people like I have this autoimmune disorder thing going on and I got some neurological things going on. I will have days where it impacts my mobility. I will have days where it impacts my energy levels. I will have days where it definitely impacts my sensory abilities. However, I can still do all of these things and on the days that it affects me, I just need you to adapt and just be willing to pivot when I have to pivot.

Ali: 24:21

So it's not a big scene and it's not oh no, what happened, but it's to offer them another way to understand, without the overwhelm Because I'm big on, I don't want anybody to be overwhelmed and I think when we're chronically ill we tend to not want to share because we don't want to overwhelm the ears that has to hear what we're sharing. But we can share it in a way that is digestible and bite-sized pieces and still get the help that we need and make the friends along the way that can help us along our healing journey and support us. Just bird feeding, right. We want to tell them, but we can tell them without all of the emotional word vomit that they don't understand.

Jen: 24:58

I think that's wonderful and start somewhere. Make a list of those impactful words, those strong words that you think are important. Make a list, start there and then, as you work on it, think about the different dynamics, the different people that you're gonna walk around and talk to in your day, and come up with a couple sentences for each one and if you have to write it down, keep it with you, practice.

Megan: 25:21

Anyone else. I was thinking of a tip when she was talking about talking to just anybody your family, whatever. When you're talking to your doctor, make that list that you were not talking about. But I want to build on that where you write out your elevator notes on your piece of paper, on a notepad. Write your questions out in detail, because I know my rheumatologist. When I come in with my notepad he knows I mean business and we're going to get right down to it.

Megan: 25:48

I feel like I have noticed that my appointments go faster and I get everything answered. I walk out of there going okay, we've got a game plan. I know what I need to do. If I'm struggling. I tell him look, I have X, y and Z I want to do and I physically cannot get there with the medication I'm on. I need help or suggestions on how to get there. I always go in with something I want to do. So he knows that I'm motivated and I'm not just in there wasting his time.

Megan: 26:18

And I guess that comes back to those other doctors that have gaslighted me so bad that I over maybe share, but he seems to respond to it. So I think my best tip for anybody is making a list and you'll eventually get to where, like all of us, we've been doing this for so many years we don't need our list. I still do it because I get brain fog and I forget. I just to make sure I don't forget, and make that list. I'll even write down my notes for my elevator if it's a new doctor, so I don't forget to tell him something that's really important, like my heart issues I'm having. Like that is important because we can't give me any medicine that's going to cause my blood pressure worse.

Jen: 26:58

So that would be my I actually have one more tip too, because there's a lot of us in the community that do advocating, I think. Yes, I have a business card because of the podcast that I hand out. But what's wrong with having a business card if you do advocacy work, because sometimes you are going to meet people that they're like oh, I want to connect with you more, or oh, I've got this project or whatever. There's so many oohs out there that you're not going to expect Make a business card, have a QR code on the back or your phone number or your email or whatever it is you want to give them. It doesn't hurt to have that.

Andi: 27:31

I second that because for someone who brings awareness online Also, if you don't want to get detailed about what you have and what you struggle with, it's really good. I usually give people my social media and it explains it all on there. You can even give like somebody else's social media to somebody, like hey, at the end of your elevator pitch. If you want to understand more about this, you can follow this person, explain it all. I usually lead people to my Instagram if I don't want to go into detail and all I have to do is go, look and they'll see all the medications I've been on, what it does to me, how it affects me, blah, blah, blah, blah, blah blah. So I love that giving out like your business card. I have like a QR code on my phone and I just they can scan it and get to my socials.

Jen: 28:08

Yeah, and I guess there's key chains that you can get to. I haven't gone that far, but you know there's key chains where you can have a QR code on it. But okay, so our last question can you share any strategies or tips for practicing and implementing the elevator pitch for everyday situations? I mean, I feel like we kind of talked about that, but does anyone have anything to add to that?

Ali: 28:56

I just want to know how Allie came to the conclusion that I'm going to just relay it with dark humor. I'm just I'm curious because I just met someone else who does dark humor like me. So what was your catalyst that says I'm going to start explaining this with dark humor, Because when I was trying to do a bubbly you didn't get it?

Andi: 29:13

I love this, so it's actually my coping mechanism. So, comedy I love making people laugh and whenever I'm in pain, especially with my chronic illness, most likely I'll make a reel about it to make myself laugh, and the darker the better, because what we have is dark, it's not fun. No-transcript. Oh, she's, you know, looking for attention, wants you to pity her. Blah, blah, blah. My Instagram would be very dark. So, in order for me to cope and in order to educate others and also make other spoonies laugh through the pain you know, because we don't do that, that it's not easy to laugh through the pain, but just to take a second to make fun of ourselves, like that's what I do I make fun of this chronic illness to help myself cope, to make other spoonies laugh for a second and also to educate people on what it's like to go through this. So, yeah, that's how I got into it that was me, that was me.

Ali: 30:25

I kind of slide in that one time I met jesus, or yeah, I saw that with this eye and I'll be pointing to the blind eye and they're like wait, yeah, I heard what you said, but are you pointing to the deaf ear? And so it throws people off. They're like are you wearing headphones in both ears? Yep, but you can't hear out that ear. You're right, but this is so that I double can't hear you. But I did. I love that. I love that you find the silver lining, because I know that it can get dark and if we can't laugh at ourselves and with people as dark as it can get, it can spiral. So I'm glad that I have you guys. So thanks.

Jen: 30:56

Likewise, and so Annie, megan and Linnea. Did you guys ever see, was it like two years ago now, allie? You know, we gotta bring it up, we bring it up all the time right when she had the video of her crying and someone wrote an article about her and several others, and they called you a teenager. Is that you that was?

Andi: 31:15

that was? Yeah, that was me. I was the very first picture. At the top there was a redhead too, and she's.

Ali: 31:22

There was a. There was a redhead, they did it on tiktok.

Andi: 31:24

That was you that was my tiktok, yes, but they called me a teenager. So I was like that's the first thing I said when my friend, who's also a Spoonie we were at a conference in front of a bunch of doctors, when we found out about that article, she brought it to my attention and I was like they think I'm a teenager, I'm in my face. But yeah, no, it was sad the things that they said about us. But that's the thing. I post one video, one video.

Andi: 31:47

That's not a funny video and it's me crying because I was going through depression, I was in pain and I had to inject. I had to stab myself with the needle and I was just like I have. I have to do this with my community. So I put my camera on, because when I inject and I'm alone, I don't want to feel like I'm alone. So I throw my camera on because it makes me feel like I'm with all of you. And so I threw my camera on, I posted it and then it gets picked up by a magazine and Candace Owens. I was like the one time.

Jen: 32:12

But you know, yeah, yeah, Nothing about like turning on your TikTok or Instagram and finding out people are lying about you. But hey way to look at it on the bright side is that they called you a teenager when you're in your thirties.

Andi: 32:22

You know none of us were teenagers. There were multiple girls in that article and not one of us was a teenager. Like come on, but yeah, it was. We had to bring awareness to it. We didn't want to like share the article, but we did have to bring awareness because they are attacking kids, they're attacking teenagers sick. Like that's disgusting.

Andi: 32:39

Like they're attacking sick teenagers and preventing people from sharing their story, preventing teenagers from sharing their story in fear that they're going to think that others believe that they're just doing it for attention.

Andi: 32:51

Like I never brought up the fact that I had a chronic illness in my teenage years it wasn't until I was 25 because I didn't want people to think I want them to pity me or that everything Andy was saying like I'm not going to be able to do things, or I don't want to hear that you're so young. So for people to make an article about that and now teenagers are going to be in fear of sharing their journey, their life, like it's not, like they're exaggerating it, making it worse. So we did have to bring awareness about that for those teenagers that they should not hold back. They should share their story and not be afraid of what some old adults in England because this was an English story are writing about us. But yeah, they said that we're all faking it and a lot of the pictures and videos that they took were us injecting or us at the emergency room, which is very sick and it's absolutely disgusting to me that they would do that, especially thinking that you're teenagers.

Jen: 33:41

Because, I'm sorry, I have lived with anxiety and panic attacks since I was 12 years old. I hid them. I did not talk about it, I hid it. It was my deep, dark secret. Because that's what we do when you're young you don't want anyone to know there's something wrong with you, you just want to fit in, that's all. You want To have articles like that come out. It's absolutely disgusting. I guess what boggles my mind even more is that they thought they were attacking teenagers. What made that? Okay, come on, do better. And he says it all the time Do better.

Andi: 34:13

Disgusting, yeah, do better. But honestly, yeah, I didn't tell anybody about my R. I used to tell people I had a knee injury and people didn't know until 10 years after I got diagnosed that I had a R. Like when I made my Instagram, people from home were like you had this for 10 years and you didn't tell anybody.

Jen: 34:28

I was like yeah, no, I'm going to circle back now. Have you thought about it? Do you have a quote, whether it be somebody else's or your own, something that you say all the time, or something that you share with others?

Linnea: 34:38

Megan, yes, okay, first of all, can I touch the last subject really really fast, because it was horrifying seeing that article, first of all, but then second of all, that is why, when I was 18, I didn't tell anybody about RA, where I tried not to unless I absolutely had to, because there were people saying in school that were saying that I was faking an injury and all of these things.

Linnea: 35:04

I wanted to hide it as much as possible. I'm really glad that you were able to bring awareness to it, without necessarily promoting the article, but letting teenagers know that it's okay to express yourself and find community that way. But with the quote, mine's really cliche and I apologize for it, but it is so true and I find that it is like something that I tell myself all the time, and that is you are so much stronger than you think you are, because every time I think that I can't do something or that I'm not going to be able to do something, I end up exceeding what I expect myself to do. So yeah, that is my quote, absolutely lifting, mar Lifting marathons K's.

Jen: 35:50

I don't know you do the dang things I tried.

Ali: 35:55

My quote is you are not your illness. Your illness may be a part of your story, but it doesn't define your worth or your strength. Some days you will conquer mountains and other days you will simply breathe. Those are both victories. You okay with it.

Megan: 36:10

I love it. I'm going to push this back so maybe you can see I have all these pictures up here and there. You are loved, you are empowered. My daughter got me all these positive sayings when I was going through depression really bad and she goes mom, you just need to remember. So I put them up recently because I redid the office. And so there you are forgiving, you are capable, you are confident. I swear I now walk through here, through my little office now, and I will read one of those a day, especially if I'm struggling with something you know like feeling not capable of doing something, I will grab the capable one. And those are my quotes. They're not really quotes, but I think you find your own affirmations that you can say that motivates you. I think that's what's really important and she did a really good job finding these.

Jen: 36:58

I love that she's always looking out for you. What a good daughter she is.

Megan: 37:02

I know she was on the phone with me when you were texting me because she had to call and check on me. She was going to get me into the doctor today.

Jen: 37:11

See, I'm telling you you've had a good one.

Megan: 37:13

She works for my primary, by the way, ladies, so she has a direct line. I love that's my little thing.

Andi: 37:43

All right, allie, you're not going to win. You're not going to win. I may be struggling right now, but I'm going to do something to make myself happy, because better days have to be ahead. Monday, I was in bed the entire day. Today, slaying, baby slaying. So those days are ahead. Just look forward to them, baby. It's true, it's really, really true.

Jen: 38:00

There are always, always, better days ahead. And for some reason and I could be wrong, but, allie, are you the one that last year, when the new year happened, that your word of the year was?

Andi: 38:11

adventure. I think that was me like two years ago. Yes, it was. Yeah, yeah, yeah, I was going on adventures every day, even if it's small.

Jen: 38:18

Yeah, and so last year I decided to focus on adventure awaits, because I really loved that you did that and I thought, okay, adventure needs to be ready for me, it awaits. And so I wanted to make last year a year of adventures, and this year I guess I'm going to say that again because I've got two kids getting married this year, you guys, but I do have some quotes for you. One of them I heard somewhere and I loved it, and then the other are two that I find myself seeing to people constantly. So the one I heard I wish I knew where I heard it from but it says you cannot chase happiness, you have to find it where you are. I wish I could remember who said it or where it came from, but I was like, okay, and then, of course, the ones from me be who you needed when you were younger.

Ali: 39:03

That one right there. That one right there. Be who you need, who you needed when you were younger.

Jen: 39:09

Yes, jenny, that one right there, it's why I do all the things I do. It's why I show up for myself, for everyone else, because I needed this, I needed this group. I needed me to be who I am when I was younger and I didn't have it, and so, therefore, be that now and be that for others. And then my other one is I have the choice to let life happen to me or be part of it. I mean, we do. We have that choice every single day. So we want to watch our days go by while everybody else is having their adventures and living their life and we're at home in bed feeling sorry for ourselves. No, ma'am, it's okay if I have that from time to time. I'm going to have that from time to time.

Jen: 39:51

Nia last year had a really hard year and, girl, you keep showing up for yourself. You do it all the time. You show up for yourself and be proud of you, because this is our year. I'm telling all of you right now this is our year and we are going to show up and we're going to kill it, just saying Thank you for being here. This was amazing. I was so excited to bring a handful of my favorite people all into one room together.

Ali: 40:14

Thank you for having me Thank you.

Jen: 40:18

Is there anything that you're going to leave us with? Is there any that you're going to leave us with?

Ali: 40:24

So be you, unapologetically, you, you're already enough on every day that ends, and why. Whatever it is you do next is going to be great. Just don't know what's on the other side of I'm scared. So today, take the one step, the faith of a mustard seed, to do the thing that you were scared of, because joy awaits. We don't really have to find it, we just have to pause long enough to actually see it and admire it, because it's always around us. I love it, I love it.

Andi: 40:51

Okay, I got chills, goodness, I got chills. Everything Andy says I'm over here, like, oh, I got chills, like, yes, I just want to say, if you're chronically ill and listening to this, find your Spoonie community, find your friends, because just talking with you guys brings me so much joy and I didn't have anybody, any friends, any family members, anybody with a chronic illness growing up, which is why I never talked about it. But when you find your people or in your community and you're able to vent, it's so important. Please, maybe vent. Don't keep it in. But when you're able to vent and talk to people who get it, it just warms your heart. So please, please, please, find a friend who has your chronic illness, is on the same meds as you, you know who gets it, and just reach out to them online and make a friend.

Jen: 41:31

Don't be afraid to make a friend. When I first joined the community, I looked at people like Allie or Sheryl Crow or any of the people that were big in the community and still are. I looked at you like, ooh, they're famous in the community. I'm just little old me. They're never going to talk to me. Look at it now. Look at it. I know you're not helping people, allie, you were like my superhero. I know I wish, but you know what? In our community there are quite a few people that people consider famous and we're always like, oh, they're never going to reply to me.

Andi: 42:03

No, my DMs are caught up. If anybody wants to be a new friend, See exactly.

Jen: 42:11

I happen to know, if you are listening, that every single person that has been speaking today they're going to answer you. They will show up for you, so don't be afraid to reach out. Ok, I have kept you all long enough. Thank you for your time and to our listeners. We'll see you next time.