Podcast Introduction

[00:00:00] Podcast Narrator: Welcome to AiArthritis Voices 360, the podcast solving today's most pressing issues in the AiArthritis community. We invite you all to the table, where together we face the daily challenges of autoimmune and autoinflammatory arthritis. Join our fellow patient co-hosts as they lead discussions in the patient community, as well as consult with stakeholders worldwide to solve the problems that matter most. Whether you are a loved one, a professional working in the field, or a person diagnosed with an AiArthritis disease, this podcast is for you. So pull up a chair and take a seat at the table.

Episode Introduction

[00:00:52] Leila: Welcome to AiArthritis Voices 360. This is the official talk show for the International Foundation for Autoimmune and Autoinflammatory Arthritis, or AiArthritis for short. As you can tell, it is a different voice saying this intro this time around. And so my name is Leila, and I am the Health Education and Engagement Manager here at the organization and a person living with the diseases we represent.

My official diagnosis includes Systemic Lupus Erythematosus or lupus for short -  SLE -  and that's with Lupus Nephritis manifestation. And most recently, I was formally diagnosed in January with Sjogren's disease and we also have two amazing humans here at the table with me today -  Patrice and Charis. Charis, if you don't mind introducing yourself.

[00:01:38] Charis: Thank you, Leila. I am so excited to be here. My name is Charis Hill. I use they/them pronouns, and I am also of course, someone living with the diseases we represent. I have Ankylosing Spondylitis, also known as Axial Spondyloarthritis. That is the shorter version of the full diagnosis, and I also have osteoarthritis, which, you know, isn't necessarily inflammatory, but it definitely is a competitor with Spondyloarthritis.

Patrice, do you wanna introduce yourself? 

[00:02:18] Patrice: Yeah, sure. Thank you. Glad to be here. My name is Patrice Johnson. I was diagnosed with Polymyalgia Rheumatica -  PMR for short -about 12 years ago, and I also have osteoarthritis, much like Charis does;several comorbidities along the way. I'm excited about this podcast, so thank you for having me.

[00:02:40] Leila: Amazing. And the topic that we have for today is AiArthritis Disease Elevator Pitches, and it's gonna be the first time we're putting this topic on the table. And that means that we are just starting to think about developing important resources to help you when you need to think about explaining your disease in just 30 to 60 seconds.And we are going to give it our best try today with giving some examples on the fly. And then we are also going to invite you to share your elevator pitches too. Something else to note about our show is the conversation doesn't stop here. We spin off conversations from what is discussed today into what we call 360its or breakout conversations that expand on the topic. So watch out for those too as we build out our resources.

And I wanted to go ahead and turn it over to Charis to let us know what elevator pitches are. 

What are Disease Elevator Pitches?

[00:03:30] Charis: Thank you, Leila. I am a geek when it comes to elevator pitches, soo this topic is near and dear to my heart, and I think this is something that everyone listening can relate to. I mean, you know, you ever get frustrated because you just can't get people to understand your disease in, you know, a short greeting when somebody's like “hey, what do you live with?” So we are going to both talk about and create some elevator pitches to help you improve education and awareness about your own condition out on the streets, wherever you are. So we are going to both talk about and create our own elevator pitches to help you improve your own education and awareness about your condition out in the streets, you know, wherever you are. 

So what is an elevator pitch? I mean, that's sort of a fancy, vague term, and it goes back from my experience to when I was first starting out doing legislative advocacy in Washington, DC. Andnd the way it was explained to us, you know, what if you get on an elevator with your representative and you have three floors to explain why you're at the capitol. So  you have like 30 to 60 seconds to introduce yourself to explain what the issue is and to ask the representative if they would support it. So we use elevator pitches all the time, whether it's talking about what our careers are, and especially as people living with inflammatory, and autoinflammatory, and autoimmune arthritis.

So I wanna give an example of my own elevator pitch, and I'll say I'm just meeting somebody for the first time, or maybe I'm explaining it to you too. So I'll say, “I have a disease that is systemic and it creates inflammation throughout my whole body. It's very painful, and it's progressive. There is no cure. So I'm going to, you know, probably get worse throughout my life, and it is called Axial Spondyloarthritis. You don't have to remember the name, I'll remind you.” So that's like a simple elevator pitch, probably took like 30 seconds. I wonder if Patrice, I can put you on the spot if you want to go next.

[00:05:45] Patrice: Actually, you did a really good job of explaining it and like you, I have been in Washington, DC, advocating on behalf of patients rights with our legislators, and you do just have that small, small window of time. So whether it's with my legislators, maybe a neighbor that I run into at the mailbox lockers, or maybe I'm on an airplane, or at the grocery store, and I ask for assistanceespecially on the airplanes when you're loading carry on up above. I'm not very tall - I'm 5 foot 1 ½ inches - so I can barely reach those. And then having to put a suitcase above that, I usually ask somebody, and I don't think I have ever been denied, but I always tell them. I usually have my hand braces on because that's where I have most of my osteoarthritis.And when I tell them that, they're usually very accommodating. 

But if I'm talking to a stranger, let's say I'm out walking in my neighborhood and I meet one of the neighbors that has just moved in They say, “oh yeah, I see you walking all the time,” and I said, “well yes, on my good days. And you know, and then, it is, it's a, I have arthritis. It is an incurable and chronic condition. I have good days, I have bad days. I know I do not look like I have arthritis, but what do people who have arthritis look like?” And you know, and I just explain it's a painful condition. There's, like I said, no cure, and I just try to live my life the best way I can.

[00:07:21] Leila: Totally. I think that that's a really good way to put that. It's you do wanna, you know, let them know like what's going on, but you don't have to tell them every single detail, or what exactly is going on. Especially if you're, you know, speaking to someone that you're not really on a personal level with. It's kind of like, you know, “I don't have to justify myself to you, but if you want to know a little bit, then I feel, will, you know, love to tell you a little bit.” 

And so, I, I have explained my disease a lot to a lot of people. I was the president of the Filipino club in college, and so I made it known that I had a disease because I would be in and out of meetings sometimes, or I sometimes I just couldn't participate, and so I wanted people to know and be aware of my disease. And so I'll go ahead and give a stab at of like how I would usually tell them about my disease. And so I let them know that, “I have lupus. It's an autoimmune disease where, basically, in your body, it's fighting against itself. It can fight against organs, skin, muscles -anything, basically- and, uh, that's where like the derivative of the, the name Lupus comes from.. It  means “wolf,” in Latin. And so, basically, you think of it as a wolf attack all over your body.” 

And so that's kind of the little spiel that I give to them. I'll also say, “my symptoms usually are mostly fatigue and joint pain, and that's kind of the biggest things that happen to me.” And so I like to, you know, let them know what my symptoms are so that, you know, if they see me kind of moping around or like kind of slowly walking sometimes, I'm like, you know, I'm just living a little bit of pain but, like, it's, it's okay, like no big deal. And I think that's one of the biggest things is just being able to let people know in a small amount of time what's happening, and if they, if they're curious, just being able to, to let them know. Andso I want to also bring awareness to our disease, so whenever I -our diseases - and so whenever I have the chance to tell somebody about my disease, I usually take the time to do so, so that I can let that person know more; that there are invisible diseases that people don't know about. That anyone that you might be looking at on the street who look quote unquote “normal,” may have. 

And so, yeah, I think that that goes into our next point of the conversation that we wanna go over is: why do we even need these elevator pitches? I mean, we talked about it a little bit in the beginning about, you know, you may be in a situation where you have to ask for help. Or you may be in a situation where someone is, is asking you “what's wrong?” And so is there any other things that you guys can think of that, like, why we would need these elevator pitches?

Why Do We Need Elevator Pitches?

[00:10:07] Charis: I think that, you know, while you were both sharing your pitches, I was remembering how autoimmune and autoinflammatory arthritis is so misunderstood. ike when you say, “I have arthritis,” the first thing that a lot of people think is that you have osteoarthritis, which is very different. It causes pain, but it is caused in a very different way, and I think that is a big reason about, like, why not only do we need to explain our diseases to the casual person, but, like, we're also forced to do it, and to explain, like: “kay, osteoarthritis is mechanical. It's, you know, caused by wear and tear, or injury, or just aging. And then, you know, like, Axial Spondyloarthritis is inflammatory, and we don't necessarily know what causes it, but it's not necessarily caused by injury. It can be triggered by that, but it is a system in your body that infects or affects your whole body, your organs, your joints.”

And so I think that is a really important point to remember. And, and that may even be something that lends itself to some of your own elevator pitches, like explaining what the difference is between mechanical and inflammatory arthritis.

[00:11:33] Leila: Because that's, that's totally what we always get, right? The, “oh, you're too young to have arthritis,” and, and things like that. I mean, for heaven's sake, I was diagnosed with Lupus at 12. So what, what, like what else could explain my joint pain at 12 years old? Like it's definitely, obviously you -  there's a reason why people who are young can have it is because it doesn't have to do with age. It has to do with, ike you said, a system in your body going a little haywire, and basically wreaking havoc on the rest of your body. I think also sometimes we can get into a situation where someone is questioning us like: “oh, you say you have a disease, but do you, like, what does that even mean? Like you look normal,” and things like that.

And that's another reason why sometimes we have to have these elevator pitches or something to kind of let them know what's going on, because a lot of us unfortunately, have been discriminated against or had something hateful said to them because people don't understand what's going on with us. And I give, always give, the example of when I was in college, I parked in the handicap spot in the library. I came outside to get out of my parking space and someone was like, “you know, you look fine. Why are you in the disability spot? Like, “you're too fat, that's why you have a disability placard.” 

And I was very upset, but also had nothing to say. Like I rolled up my window and just went about my day, and then went on Snapchat, and ranted about it because I didn't know what else to do. And I really wish in that exact moment that I was like, “not every disability is visibile. I have an invisible disease, and I don't have to justify myself to you. I have this disability placard because my doctor signed off for me to have it, because I have it and I have it for a valid reason.” And that's exactly what I would've said at that time. It's in that situation, it's none of their business. You don't really have to tell them exactly what you have or, or anything like that, but you should still say something to stand up for yourself, and advocate for yourself, and everybody else who have - who has -  these diseases. 

[00:13:40] Patrice: I agree. When I was first diagnosed with RA, I was very angry. I have had OA in my left knee for 38 years -so o been a long time dealing with that and living with that - but the RA was just, you know, I think like the rest of us, it was just, I was flabbergasted when, when the doctor diagnosed me with it. I had, I thought I had something totally, totally different wrong with me. And, you know, and then you get to the point where I would say to people, “I can't,” you know, “I'm having a bad day. I can't exactly do that today.” And it's like, “well, why?” 

And I used to get very angry at people, you know? Why don't you understand my disease? Can't you see I'm doing the best I can?” But now I have -after 12 years of living with it- I have just finally figured out, you know, kind of a softer, gentler approach. And I would say, for the most part, people are very, very understanding, with the exception of (I get this probably at least once, maybe twice a week),“you don't look like you have arthritis.” And then, of course, like Leila had mentioned, “you're too young to have arthritis.” 

And the OA that was diagnosed in my left knee was the result of two traumatic injuries and two subsequent surgeries when I was 12 and I was 13, so I was only 30 when I was diagnosed with osteoarthritis in my left knee. And there are three ways that you can get osteoarthritis. One, which in my left knee, was traumatic injuries followed by the surgeries. The other one is through age, and I think that most people who do not have arthritis can, you know, kind of agree about that. And the third way, which I was kind of blown away when I saw my rheumatologist -I think it was about four years ago -  and he diagnosed me in OA in my hands, hip, spine and lower back. And I said, you know, “I think I'm kind of -”and even myself, I said,“I think I'm kind of young to have that, don't you agree?”

And he says, “no.” He said: “This other OA that you've now been diagnosed is hereditary.” I don't have any family history of that, but that's a lot of us arthritis patients: there is no family history of that. So I just kind of wanted to clarify that. Also that, for me, my RA is more like - and like, and Charis explained this great - for me, it's more in my muscles. And it's kind of like, when you first couple of days when you have the flu and you're so achy, that's what mine feels like. And then of course the OA pain is always the joints: hips, hands, knees, ankles.

[00:16:24] Charis: I think that speaks to the, again, the need for elevator pitches, because every single one of us has a different experience with our diseases. Even if we have the same exact condition, we're gonna have a vastly different experience than the person next to us. I, I was writing furiously while you were talking, Patrice, because you were like making me think of so many things that I wanted to share -I'll share some of these later in our conversation- but the one thing that like really struck me was thinking about how elevator pitches are about several things. They're about identity, status, educating people, autonomy. ike we claim, like we get to define our own experience and claim space when we share our own stories, like nobody can share our stories with, you know, for us. 

And so, elevator pitches are our own story, put into our own words. I mean, I'm fine if, if the listeners like copy everything I say verbatim, but make it your own too. I mean, that is a key point, you know, to take away from this podcast episode. And I'll actually challenge you a little, Leila, on your earlier comment of “say something, stick up for yourself.” Because I, I think you can just be silent, and that is a form of an elevator pitch, because you might get on an elevator and you're silent, and that is, like ,your - that's your stand or whatever against ableism 

Umm,“Stand,” is, is an ableist idea. *laughs* What's the better word? 

[00:18:15] Leila: Position. Just your position on, on it or your - 

[00:18:19] Charis: Yeah. 

[00:18:19] Leila: It’s your expression of, of how you want to, to get your message across. 

[00:18:23] Charis: Yeah. Yeah. And -

[00:18:25] Leila: Absolutely. 

[00:18:26] Charis: And like t-shirts too, like you can put a phrase on a t-shirt and that's an elevator pitch without you having to say anything. So, yeah.

Using Elevator Pitches for Other Explanations

[00:18:33] Leila: Definitely. I, I was thinking of another situation that you might need to explain or give a little elevator pitch is when, you know, a lot of us take immunosuppressants. And that's one of the biggest things that we take in order to control the havoc that is being ran on our body by our immune system. And so with having to take immunosuppressants in order to control our disease, that therefore leaves us very vulnerable and open to all the other diseases in the world -viruses, colds, all these other things. And a lot of us sometimes have to take a step back and not attend a lot of the things that we might want to. I mean, especially in this Covid time, the past three years, I, I'm sure, most of us have really been really careful about where we place ourselves, and I think that's one of the things too, is having to deny hanging out with someone or going somewhere because you wanna protect yourself.

And the times that I have, you know, went out and, and risked it, most of the time I do get sick, and I have to go into there knowing that I did a plus and minus, or a cost benefit analysis of “is it really worth it to go to this place? I know I'm gonna get sick after.” And you have to, you know, that's things that people don't know that we have to battle with every day.

[00:19:57] Patrice: I agree. I am still wearing a mask everywhere. 

[00:20:01] Charis: Me too. And I don't go anywhere. 

[00:20:05] Patrice: *laughs* I mean, just yesterday we had a repair man here, and you know it, it's whether it's a repair man or, we're still landscaping our backyard - I mean, he's not in our house - but I still am wearing a mask. I don't know where that person has been, who they have come in contact with. And especially, I hate the repairman because they have to touch everything, and they put those dirty, filthy, you know, those little metal boxes where they have all their info on there on my counter where I prepare my food. And so after they leave, I usually open up all the windowsand I disinfect everything. I know it's probably overkill, but it does make me feel better. 

[00:20:50] Charis: Patrice, I wonder if that is one area where elevator pitches can be useful? Like when strangers are coming into your home and you just have a, a two minute spiel on why it's important for them to protect you. And that is both an opportunity to educate as well as, you know, as for your, your very vital needs.

[00:21:13] Patrice: It is, it is. I usually tell them when they come in “I have a autoimmune disease. Everybody that comes through my house has to remove their shoes.” I have actually had people say, “No.” I have booties -I have a stack of booties right at my front door - and I give that as an option. But I actually had somebody delivering something a couple of years ago and they said, “I'm not taking off my shoes and I'm not wearing those booties,” and I said, “bye.”

[00:21:39] Leila: It's so funny because it, that's so common, like in Asian households. Like I, I would never wear my shoes in someone's house. Like it's something that's culturally, like something that happens too. So if even more so, like why wouldn't you do it for someone's health reasons? Like, that's, that's ridiculous at that point, to be honest.

[00:21:56] Patrice: I know, I know. *laughs*

[00:21:59] Leila: Yeah. So I, I think when we were talking about giving elevator pitches to different, in different situations, I think that it does need to be catered in certain ways. Like, you know, say if someone was a teacher and they have to explain that to their kids.Like it's gonna be a totally different way that they're gonna explain it to their family or their friends. You know, when I explain it to my family, I feel like sometimes I try to downplay how extreme things are going sometimes, because I don't want them to worry about me, and I also don't really want them in my business and asking me so many questions. 

So, I kind of, you know, if I'm talking to my grandma, maybe I'll just say, “oh yeah, grandma my, my Lupus is still doing okay. I'm, you know, I'm still taking immunosuppressants, but you know, I'm trying to stay as safe as I can. My joint pain is, is still pretty bad, but at the same time I am, you know, I'm trying to exercise in order to, you know, aleve some of that pain.” And that's kind of where I leave it, um, when I'm talking to my family. I kind of, you know, if my, if my sisters want to know a little bit more about how I'm doing on the day today, then I'll give them a little bit more detail. But I feel like for certain audiences, you definitely need to have certain things that you explain to them and, and how you explain it to them.

[00:23:13] Charis: Yeah. I feel like it's also about conserving energy because we spend so much time taking care of our health. I mean, we know it's like a 20 to 40 hour work week if you take care of a chronic disease successfully, and a lot of us have comorbidities. And then, you know, thinking about the effort if, if we have a career, or doing chores at home, or spending time with family.. Like, add on to that the effort it takes to do elevator pitches. And I think that's another reason it's like important to just have them on the, you know, queued up in your brain all the time so you don't have to think about them in the moment. And I think hopefully you can like bookmark this podcast episode and, like, use it as like a training course or something. 

But, yeah, I mean, I want to mention how I sort of introduce my disease as an elevator pitch when I'm being interviewed for media stories. So that's a very specific form of work where I'm showing a very professional face, but the topic is also about my experience as a disabled person. And so I, I kind of have like my cue cards down in my brain for when a reporter's like, “well, introduce yourself to me.” 

And so I'll say something like: “So I'm Charis Hill. I use they, them pronoun. I live with a disease called Axial Spondyloarthritis. That's my primary condition, among many others, and it causes inflammation throughout my body and can affect all my organs, including the heart, and the lungs, and the skin. But primarily for me, it hurts my largest joints the most, especially in my lower back, and my shoulders, and my neck area. I take a drug that suppresses my immune system and this disease doesn't have a cure; you just treat it to try to slow down symptoms. And that's why I'm talking to you today for this interview.” 

So that's, that's my, you know, professional, public facing, you know… Whoever, however many people are gonna watch or read that article will get that, that snippet. So, yeah.

[00:25:31] Patrice: I think that's excellent, excellent. 

[00:25:33] Charis: Thanks! I've had a lot of practice. *laughs*

Chronic Disease Management is Time Consuming

[00:25:37] Leila: I really wanted to go back and, and acknowledge the fact that you did say that having - or caring for yourself - as a, with a chronic disease is like a part-time or full-time job. I think that's a lot of what a lot of people don't get is that we're constantly going to doctor's appointments, constantly following up with nurses about blood work, constantly on the phone with a pharmacy, trying to make sure our medicine is covered.

Like those are things that, you know, people don't really get, and that's what's really hard sometimes about having a career when you do have an AiArthritis disease, or any other chronic disease. I think it's sometimes it's a sensitive topic on how to even bring it up in the workplace. I think that, you know - I, I'm obviously an AiArthritis staff member. I, I work at AiArthritis, or I work at home for AiArthritis. If we're fully remote, we have flexible hours where if you're not feeling well in the morning and you wanna take the first two hours to sleep in, you just, you know, send a message in the group chat and say, “I'm actually gonna shift my shift to be, I'm gonna work two hours later today and I'm gonna take, take a nap this morning.”



You know, it's when, you know, when most of our staff has diseases that we work with we are able to be flexible, but not everybody's able to have that. I mean, I had a job beforehand where I would have to take my 15 minute break and, and go call my doctor's office to go see what was happening with my blood work. And I didn't get to really have a 15 minute break when, you know -  I, I can only imagine how hard it is in, in other, you know, corporate settings that people have to deal with that. 

[00:27:15] Patrice: So, I, uh, for many, many years, I was an active real estate agent when I lived in California. Of course, you know, the one thing people think is real estate agents make a ton of money. We don't. I had to give it up because it was just, I wasn't making any money at it, and it wasn't for lack of trying either. 

But you don't realize, - yes now everything is online with the forms, and the metro list,ou know, where you can run properties, and you can contact your clients. You know, you don't have to meet them anymore. However, you do usually have to be there for the home inspections. Open houses were a killer for me because putting out those signs -  they aren't lightweight. The lightweight ones, yes; a lot of real estate agents do use - but they're cheap and they fall apart. So then you're looking at the very expensive ones - which are heavy, and if you have osteoarthritis in your hands, or your back, and you're stopping every five seconds and putting those out, I mean, it can just get draining.

And then you have to sit there for four hours greeting clients. And I would always try and avoid not to do open houses with two-story homes: I can go up a flight of stairs, I cannot come down. So, you know, and it's just… And same with showing homes with clients. I just usually would tell 'em, “go ahead, go upstairs and take a look at the rooms and then let me know if we have any questions and then I will go with you.” And then I always had to explain: “I have arthritis in my one knee and it's just, it's difficult for me to manage stairs.” Most people would understand that - some do, some don't. It depends. But, you know, it was one of the reasons - one of the many reasons -  I gave up doing real estate. It was just too draining, emotionally and physically.

[00:29:02] Charis: That's so true. You know, just thinking about every single situation and experience of our daily lives could require a different elevator pitch. You know, even  if we're not necessarily defining the diseases we live with, but like you were just saying, Patrice just saying “this is, these are my limitations,” and plainly stating, you know, “if you need me to climb the stairs to look at an issue, I will, but for now I'm gonna stay down.” And just like every aspect of explaining our experiences to people is a form of elevator pitch. And you, our listeners probably do this daily already without thinking about it. 

Disease Accommodations and the Workplace

[00:29:46] Leila: Well yeah, I mean going, you know, in the workplace, I think it's important for us to maybe give the, give our listeners an idea of what they could say to their potential employers, or their supervisors, that may, you know, they may feel that they may need accommodations. And so, I think that's the biggest thing is, is that you should feel comfortable enough to bring up to your workplace that you do -  you may need -some accommodations during certain periods. And I think that's the, that's one of the things that we have to be conscious of too. Maybe if you do feel uncomfortable about bringing that up to your workplace, that maybe that may not be the right place for you. They, the culture that they have there might not fit what you know you may need. I think also being able to give them enough to let them know that you need accommodations, but not having to, you know, fully explain everything that you, that you, you're going through at all times.

You know, again, just giving them what you do need to let them know in order to get those accommodations like, you know, sometimes letting them know at the beginning of the day, “I know that I'm gonna have to speak with my doctor at some time today. I will, you know, take that call when I need to and I'll let you know about it so that, you know, you're not wondering where I am.”

But, you know, being able to be, to communicate, because you also don't wanna put your health on a back burner. That's what you don't wanna do is avoid the, the phone calls and, and avoid trying to do all of those things because I've done that before to save face at a job and not, you know, reply to my doctors and you just keep pushing it back and keep pushing it back. 

So if I were speaking to my supervisor, I would say: “So I know like, you know, you hired me to do this job for a reason. I'm really great at this job. I do, unfortunately, have a chronic disease in which I do, I may need a few accommodations, or schedule shifts. I go to the doctors maybe about two to three times a month, and that's, you know, more than normal for a regular person. But I just wanted to give you a heads up on that and we can communicate on how best to treat that in the future. I also sometimes may not be feeling too well. A lot of the times I can work through it, but sometimes I may not be able to. So I will also be able to keep open communication with you in that regard; if you can do that for me too, I would completely appreciate that. You know, I would love this to just stay between me and you. I don't want anybody else in the workplace to, to look at me differently for getting accommodations but, you know, at the same time if somebody does ask, I, I will, you know, let them know about my disease and, and why I need these accommodations.”

[00:32:30] Charis: I am remembering my last job where I was, you know, in an office setting. But I do wanna mention before I, I go into that, that chronic disease, including autoimmune and autoinflammatory arthritises, they fall under disability. And so you qualify for those accommodations under the ADA, the Americans with Disabilities Act, and if there is an HR in your office, that's where you go for those accommodations.

And I think it is important since we are sharing like what to say in a workplace that you're careful not to share too much information with a direct supervisor who's not necessarily in HR because you don't want them to retaliate, even if that is illegal. And HR is required to keep that information confidential when you go to HR and request those accommodations. It is also illegal for an employer, like your supervisor, to ask what your disability is, to ask about private healthcare information. So that is your choice. You know, you choose your own narrative. But I was remembering that in my last career, in an office setting, we had like this ergonomics professional come in and like measure people for these fancy ergonomic chairs and like say, you know, “this is how far away from your desk you need to be, and this is the height your computer should be.”

And the chair that was like, probably a thousand dollars, was increasing my pain, and I had to go to HR and say hey, “I just need a $25 exercise ball to sit on.” And they were like, “usually when people want those, they just buy it themselves.” And I had to say, “you know, this is an accommodation I need.” Anyway, like that is, that is a tangent for another time. But I just wanted to bring up that, you know, we choose what we share. 

[00:34:24] Leila: Absolutely 

[00:34:25] Charis: And we shouldn't be pressured to share more than we have to. 

[00:34:29] Leila: And it is what obviously also 100% illegal to get fired for anything that may be happening in accordance to your disability. So to keep, you know, that, that should be implied also with everything that Charis said. But you know, just to be completely transparent, if that is something that ever happens, you, you definitely have a case against that workplace. 

[00:34:52] Charis: Maybe we should do a whole episode on that and bring in an employment lawyer. 

[00:34:57] Leila: Yeah. We should or bring in our HR person. 

[00:34:59] Charis: Yeah. Yeah, back to our regular programming. *laughs*

Humor is a Great Tool 

[00:35:04] Leila: I know, right? Alrighty. So, yeah, I mean, you know, that was a totally serious kind of topic that we just finished up discussing. But we do have Charis here with a little bit of some maybe like, fun ways to think of our diseases or ways to compare them to different things, so that, you know, it can, you can make it something, enjoyable, or fun, when you're explaining to other people your diseases.

[00:35:30] Charis: Yeah, so I love puns and so I have a knack for like creating phrases that go on t-shirts for awareness, which is a form of elevator pitch. And so, I didn't actually come up with this first one. I remember posting online like, I have Ankylosing Spondylitis - and this was before like the name changed to Axial Spondyloarthritis - and someone I'd never met before, I didn't know, said, “you have Anka-winning-spondylitis.” So, you know, Ankylosing = anka - losing. You know, and so ever since then I'm like, I'm anka-winning.

Well, I mean, you can bring those kinds of things up in conversation as like a form of comic relief when you're explaining something like, so I'll share three examples of phrases I've come up with. First one is Ankylosing Spondylitis before the name change. And so a lot of people hear Ankylosing and they think Ankylosaurus the dinosaur. And so I came up with the phrase: “Ankylosing Spondylitis - Nota dinosaur, but close.” And I have it on several t-shirts, and it worked. It was a great conversation starter. 

And the second two are about Axial Spondyloarthritis. So one is: “Supercalifragilistic Axial Spondyloarthritis.” *laughs*  It just makes, you know, makes a joke about how long and complicated the name is. And the last is my favorite. I actually came up with it during the American College of Rheumatology annual meeting a couple years ago, and I started laughing out loud in the middle of a big presentation. So it's: “Axxially, I do have Spondyloarthritis.” *laughs*

[00:37:32] Leila: That would make me laugh in any situation also, I think that's hilarious.

[00:37:36] Patrice: Yeah, I actually have two kind of funny stories. So I had mentioned at the very top of the program that I have Polymyalgia Theumatica, which PMR is the shortened version, and I once told somebody, yeah, that the short thing is PMR and they're going oh, PMS and then -

[00:37:56] Leila: Yeah…. No, not the same. Not the same. 

[00:37:58] Patrice: The other one was, in my last community, I was at the mailbox lockers and my next door neighbor was there. And we were chit-chatting and she said, “how is your arthritis?”

And I said, “it's still there. It's never gonna go away.” And she said, “oh, dear.” She says, “you'll get better soon one day.” And I, you know, it's just like, how do you address that? So I just said, “thank you so much for your concern.” 

[00:38:30] Charis: *laughs* Sometimes that's all you can say. 

World Ai Day & Wrapping Up this Episode

[00:38:01] Leila: No, honestly. Uh, one of the things that I always say is that like, “oh, my body just hates itself. Like it's just another day, my body's just fighting against each other, like for what reason?” And then I just like to picture just like, just this figment, just like punching all my different, like parts of my body, like inside. And I'm just like, “yep. It's just, it's just mad. It's just Floyd Mayweather in there just, you know, going, going at it at the different parts of your body.”

So, yeah. And you know, we always have to deal with, with these types of things, sometimes with a lot of humor because otherwise it becomes pretty tough to deal with it. So you gotta laugh, you gotta, you gotta get through that. So, those are some fun ways to think of our diseases.You know, I think that, you know, there's gonna, there has to be always be a mix between the serious and the fun when you are explaining the diseases to people, because it's not everybody's gonna understand. So you gotta throw in some humor in there every once in a while. 

Another thing that we wanted to go into is that on May 20th this year and every year it is World AiArthritis Day. So AiArthritis staff and volunteers are starting to work vigorously to get together and start our awareness for this year. And a lot of these arthritis, AiArthritis disease elevator pitches can also be helpful whenever we are preparing for those awareness days because, you know, if you're helping us to say, raise money for our organization during that, okay, well what is AiArthritis?

A lot of people think that we are talking about artificial intelligence here and that is not what it is. So we have to make sure that we have elevator pitches to let them know. AiArthritis is a disease, is an acronym for autoimmune and autoinflammatory arthritis, and that includes, you know, this list of diseases. And we're creating awareness because all of these diseases have very similar symptoms, and we want everybody to know about them. So that's one of the reasons why we are also putting together this episode of this, of the talk show, to get people ready for World AiArthritis Day. 

And we're doing something very new this year. We're calling it the AiArthritis Race - a - thon, which is a mix between our auto theme that we do for World AiArthritis, and a telethon. So we are doing a 24 hour live stream starting on May 19th at 5:00 PM Eastern Time on our YouTube channel. That is youtube.com/@AiArthritisday, and we are gonna be live streaming for 24 hours straight from May 19th, 5:00 PM Eastern Time to May 20th, 5:00 PM Eastern Time. And we will have different entertainments, comedians that have our diseases, musicians, and other patient organizations from all around the world to share their resources about our different diseases. So we are so excited for all of you to, to get involved. If you want to learn more about World AiArthritis Day, please check it out on our website. 

We also have a business sponsorship package that we have on the website page. So if you know any businesses that would love to donate to our cause, we have, you know, different tiers going all the way from $250 up. So if you, any business, you know, you can spare $250, wee would love to be able to raise more money for education, advocacy and research of all of our diseases. So, that's World AiArthritis Day, and it's coming up again on May 20th. So rev your engines, get ready at the start line, and get ready to race and drive awareness of all of our diseases.

[00:42:17] Charis: To race money.

[00:42:18] Leila: Oh yeah. Huh? To race money. That makes so much sense! *laughs* Well, thank you so much, Charis and Patrice for being here with me today. 

[00:42:26] Charis: Thank you. I'm so glad I could join. 

[00:42:27] Patrice: Yeah. Thank you for having me. 

Contact Information & Resources

[00:42:29] Leila: Of course. And so both Patrice and I, you can find us on all AiArthritis’s social media @IFAiArthritis. I also have my own Lupus Instagram that I run, and that is @Lupuslifestyle.Lei. nd Charis,do you wanna let people know where they can find you? 

[00:42:49] Charis: Yeah, so for as long as these platforms exist, I am on TikTok, Instagram, and Twitter. Twitter especially @BeingCharisBlog, just three words mashed together: Being - Charis - Blog. That's B-E-I-N-G-C-H-A-R-I-S-B-L-O-G.

[00:43:13] Leila: Amazing. I also forgot to mention that by, @LupusLifestyle.Lei, does have a TikTok also, so I'm on both TikTok and Instagram. And so now it's your turn too help us continue these patient led resources. 

Follow us on all social media, like I mentioned, @IFAiArthritis, or you can email them to info@AiArthritis.org, or even send up a, send us a WhatsApp message at 1-314-2827 -2 -1- 4. You wanna make sure to get that “1” in there because WhatsApp, WhatsApp is an international app, so the “1” represents the United States. We will continue creating elevator pitches and resources and maybe even add yours to a, to the list. 

You can check out this episode and all episodes along with our amazing patient design programs and resources at AiArthritis.org. While there, please click that big red donation button, because we couldn't do the work that we do without your generous support. Thank you all again for tuning in and we hope you learned something new. And don't forget to submit your elevator pitches too, because only together can we truly create programs that impact your lives today and tomorrow.

Closing Narration Segment

[00:44:27] Podcast Narrator: AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis, find us on the web at www.AiArthritis.org. Also, be sure to subscribe to this podcast and stay up to date on all the latest AiArthritis news and events.