Hello! Welcome to episode 119 of I’d Rather Stay In. This week, we’re talking to our friend Jenna about what it’s like to live with chronic conditions.

Episode transcript

Megan
Welcome to I’d rather stay in with your host Megan Myers and Stephie Predmore. This week we’re talking about chronic illness with our guest, Jenna Hahn. Stay tuned.

Stephie
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Hello,

Megan
hi Stephie

Stephie
so I did the thing I did I did the scary thing. Last week, I went and I auditioned for the show. And I was not cast, which, like I had already, like prepared myself for and was 100% cool with. But I did the scary thing. I did the scary thing. So that’s awesome. I wanted to follow up. Yeah, I It’s actually it was interesting, because the gal that was like sitting closest to me. Um, she was she’s like, pretty close to she’s like, somewhere in, you know, our general age range ish. And she had never auditioned for anything before. Like, she even said that she was homeschooled. And so she like hadn’t even done anything like when she was in high school or anything like that. And it was just always on her bucket list that something that she wanted to try. And it was really just delightful speaking to her, because she just had such a great attitude about it. She was like, yeah, like, I know, I’m not gonna get cast, like, there’s so many people here that are so much better than me. But like, I could just see, just like watching everyone else, I can see all of these ways that I could like, improve, you know, and get better and grow at this if I wanted to come back and try it again. And I was like, that’s amazing. And I told her I was like, I don’t think you understand that auditioning is actually the hard part. Like performing is not the hard part. Because you’ve done a lot of practice in the performing is the auditioning when you’re coming in blind, and you don’t know what the fuck they’re doing or what the fuck they’re looking for. That’s actually the scary part. And so I just like really gursha I was like, I think it’s awesome that you came out and you did this and like it this is this is the scary thing. So it was a nice reminder for myself as well. So anyway, did scary thing. And that’s that. So wanted to follow up and let everyone know that I that I did it. I did it.

Megan
Did they send you the nice email? No, I think

Stephie
they must have gotten my email address wrong, because I don’t know. Well, because like when they were like kept reading off my name, I clearly had written stuffy and the director kept calling me Stephanie, which low key drives me insane. Like, like, if someone says it the first time. Sometimes, like that’ll happen. Sometimes there’ll be people will be like Stephanie, and then they’ll look at the paper again. And they’ll be like, Oh my gosh, so sorry. Stephie. Because they’ll realize like, there is no A N in there. But she like just kept doing it. And so I’m like, did you all put Slyke email Stephie Predmore. Because if that person exists, she ate me. Like if that write an email address, it ain’t mine. So I don’t know. But I, I actually ended up like messaging them on Facebook yesterday and being like, so I never got the email with like how to volunteer and do like backstage stuff. You could like, connect me. So here’s my actual email address. So I don’t know about whether I ended up, like helping with this show. Or maybe like helping with costumes. They’re doing Jesus Christ Superstar next, which I don’t care to audition for, because I don’t particularly like that show. But I might.

Megan
There’s like one good role for women in that show. So

Stephie
literally, I mean, so yeah, and it’s just like, I don’t know, this is so my favorite. So like, I’d rather wait and audition when they do Cinderella, like early next year. But I might audition like for or I might volunteer to do like costume help with costumes or something like that. And that’s a good way to like just get to know the people in the theater and for them to get to know you because it is actually really hard to like kind of break into a community theater. Bubble because they tend to be very like here’s the pool of people that we know and Willis Keaton casting the people that we know so you kind of have to like, warm your way up a little bit, especially if especially as a woman, men can just show up and breathe and they’re like Yes, go on stage.

Megan
Oh man. Yeah, I am. I’m still salty about the fifth grade play in which we had auditions and then we had callbacks. And one of the boys did not even show up to callbacks up. And they cast him over me because he was a boy like literally. I’m still angry about it. And that was great.

Stephie
Yeah. Yeah, I feel that. Yes. Yeah. Men can just like because there’s never there’s almost never enough men. Especially especially if it’s a musical. Oh, yeah, it was. So especially if they’re tenors, there’s never enough tenors. So if like, a tenor shows up, and he just like, breeds, they’re like, yes. Your your cast the lead role. So

Megan
awesome. He was like the actual like, one talented boy of the whole group anyway, but it’s just annoying that

Stephie
he didn’t show up. Do the thing you were supposed to do. And here you are.

Megan
So I feel a ruin I’m 11 year olds life. Damn.

Stephie
With what’s new with you, Megan. Um,

Megan
I got distracted earlier, surprise, surprise. You know, my, my door in my office has these lovely, it’s a French door situation and has these lovely top and bottom locks. Uh, huh. Victorian lock style, whatever, but the bottom panel is missing. And therefore the bottom lock is technically broken. And also there’s no hole in the ground for it anymore because they covered it up. But I would like to get a new panel at least to cover up this ugly wood hole in my door.

Stephie
It is just a hole.

Megan
It’s just a hole with like a rod sticking out of it. And so I mentioned it to my husband, they’re like, We need to replace this piece. Because I’m sure you can. And he was like, they don’t exist. And like so now I’m like, deep into like vintage hardware, websites and very distracted. And oh, that’s when it was time to record. Yeah,

Stephie
that’s a real rabbit hole. Because like you could see you because you get all those websites and you’re looking for one thing, and then you see something else. And then you scroll over there. And then many rooms later, you’re like what was the original thing that I was coming on here to look for?

Megan
Yeah, um, the the main issue that I’m having is that I don’t know what it’s actually called. So I really just have to scroll through a lot of paycheck because

Stephie
cover thingamabob errs, probably not gonna get you very far. If I had to, I mean,

Megan
yes, yes. And there are like top and bottom lock things, but they’re not the same. And I don’t know. I’ll have to do more searching but I am almost positive. I can find a replacement. Yes. Or at least something to make it not look something like I don’t it doesn’t have to work. It can literally just be a panel. Yes, it matches. I don’t care.

Stephie
Just has a look. Okay, that’s all I care about.

Megan
Yeah, it was basically it was just another lesson in like, are you gonna prove me wrong? Let’s see about that.

Stephie
It’s basically your marriage in a nutshell. Uh huh. Yeah. That sounds about right. So living with one chronic illness much as multiple freakin flows. It’s not fun. And especially if you have what’s often referred to as an invisible illness, it can be really hard to get the people around you to understand why it’s hard.

Megan
While Stephie obviously has some insight into what this is like we’ve invited today’s guest to lend another voice to this experience. Please welcome Jenna Hahn.

Jenna
Hello. Thank you. Happy to be here.

Stephie
Thanks for joining us today. Jenna. Let’s tell our listeners a little about yourself.

Jenna
Yeah, um, so I live in California born and raised. I’m 32 middle of five girls. So I grew up with a lot of estrogen around me. And I’ve been married for five years now. My husband and I are big pittie lovers. So we’ve got a pittie boy and two kitties and four chickens. We lucked out having a rather large plot here in Sacramento actually right next door to one of Stephanies best friends. And so I’m just always happiest when I’m outside with the animals or in my garden. Definitely a water baby. You know, being in California and always happy to be in water, especially having chronic illness. That’s one of my places of respite. But I’m also kind of up Crowd nerd in the last about a little over 10 years I’ve been working in social and environmental impact. Things like climate change environmental justice policy work. And I’ve actually just recently taken a step back from that, because I’ve needed to focus on my health. So, this podcast is perfect timing. But yeah, I’ve lived with chronic pain and illness for most of my life, and most of which has been invisible. And I have gone through different phases where I’ve kind of learned to, you know, keep things to myself or be overly positive or, because especially as a child, it was hard to explain to kids or adults what was going on. And now as I’m, you know, stepping into my 30s I’m really trying to own more of my truth and also realize that people can’t read my mind and I have to, you know, when it’s appropriate, share what’s going on. If I expect the people in my life to You know, understand better so I’m happy to be here and I’ve got lots of thoughts so happy to dive in.

Stephie
Before we before we get into this Megan, I just have to tell you because we have a we have a thread between myself and then Jenna and Kathleen, who’s her next door neighbor and then our other friend Adi and I had sent something it was an Instagram real or something about like bears and camping and she’s like, just another reason why I don’t go outside and you were like, you just have to camp and black bear territory. It’s so much better than grizzly territory. I’ve got all the camping gear we’re ready whenever you are. Black bears are no big deal that will that will be never that will be that will be never I will never I will never be camping stuff. You want him

Megan
to go camping and no mayor territory. So

Jenna
you guys like literally when I first met my husband one of the like talking points that when I was telling girlfriends and stuff, I’d be like, Oh my God, he’s so perfect, blah, blah, blah. And I was one who usually did not wear my heart on my sleeve. So this was a big change. But one of the things I was most excited about was like you guys, he has camping gear for like a family of 10 this is gonna work out.

Stephie
There’s a lid for every pot.

Megan
Well, my family loves camping. So we’ll talk

Jenna
Okay, now again, you and I, let’s go to black bear territory. I don’t need you guys to

Stephie
go campaign and Addy and I will just like not go outside. Okay,

Jenna
perfect. Although ironically, she’s like the queen of SPF. And like all the different you know, Sanlam ensure

Stephie
that you have all of the sunscreen for your trip. Perfect. And then we will make sure that we wear our sunscreen while we sit by the window.

Jenna
Okay, and my name is to be biodegradable, and reef friendly because I’m about to swim in some alpine lakes, you know? So I’m sure she has some on hand.

Stephie
Oh, 100%. Yes.

Megan
So can you give us a brief summary of your chronic illness history?

Jenna
Yes. Okay. So I actually feel kind of ridiculous whenever I’m like, oh, I need to like if I have to list things out all at once. And that even even that feeling of feeling ridiculous. I’ve tried to fight because I’m like, what is that? Why am I feeling so dramatic for all these different things. And so I’m going to try to keep it brief. But I do have kind of a long storied history going back to when I was a little kid. And I have, you know, both chronic illness and chronic pain, which are often intertwined and often reinforce each other, unfortunately. So I’ve had a lot of different kind of complex tests and surgeries and experimental surgeries throughout my life. And so it kind of sometimes it’s hard to even pin down like, is this a symptom of this disease or this disease? So I’ll walk you through those two. So what like I said it kinda like chronic illness and chronic pain from different anatomical issues or injuries. So, the first for chronic illnesses a couple of years ago, I was diagnosed with endometriosis. I’m actually recovering right now from an excision surgery I had a month ago where they did all sorts of lovely reconstruction organs and pulled out things the size of grapefruits and things like that. And then I also have interstitial cystitis which is a chronic bladder health issue. Ehlers Danlos Syndrome, which is connective tissues disorders, causes a lot of different kinds of problems and hypermobility, fibromyalgia which is kind of a catch all sometimes around muscular skeletal and nerve pain, basically like my brain and nerves don’t properly connect. Even recently I had I had heating packs on myself which those with chronic illness you know, you have your emotional support heating pad, and I couldn’t tell the difference of if it was ice or hot. So like my my nerves just can’t. They don’t communicate properly a lot of times And then I’m still doing some work. Like, I’m still really on some of the diagnosis journey for many things. I’m doing a lot of genetic testing. I mean, some of the things came back recently, where they’re like, Well, you’ve got some mutations, but we don’t have enough studies on them. So we’re just gonna say it’s not significant right now. But the studies that have been done, like they say this, this and this about, you know, joint development, or whatever, and it’s like all things that line up with my other issues. So I’m like, okay, that’s kind of helpful. So that’s kind of the quick summary of the illness side. And then anatomically, I have some joint abnormalities. I was born without my ankle and heel joints and have a history of joint fusions. So a lot of my like metatarsal and my feet were in the wrong places. I’ve had my feet reconstructed, many times I’ve spent multiple years of my life and casts and on crutches or in wheelchairs, which is a very, it’s an interesting experience kind of going in and out of trying to navigate the world in a wheelchair, when you realize the world has very much not been made for wheelchairs very easily. I also have an extra kidney, which has caused interesting problems. I have chronic muscular spasms, again, it’s kind of connected to the nerve issues and nerve damage that I have. It’s almost like my nerves are vibrating throughout my abdomen. And I actually just got a bunch of Botox to try to calm it down. One of my, in my Euro gynecologist was like, Alright, we got to just paralyze your whole abdomen. And then

Stephie
a lot of that’s a totally normal thing. Absolutely, yeah,

Jenna
I got 15 times like the legal amount that can go on a face, like just all in my all my stomach, which has been very interesting to like, I didn’t realize what it’s like to just feel like your nerves aren’t shaking. But at the same time, it comes with some trade offs, so may not be doing that again. And then I just have a lot of like nerve pain in general, like I said, and migraines and stuff. I had spinal meningitis as an infant. And my neurologist said that basically, that damaged my meninges, which are the casings to, like your brain and spinal cord and stuff. So that really messes up all the nerves, and everything. And then lastly, you know, again, trying to keep this short, but it’s, unfortunately, a long list. Just a lot of different GI issues. And most recently, they found that I had just kind of been ignoring my chronic acid reflux. So I was like, Oh, this is bottom of my priorities. But I had some complications in surgery, and they found actually that I have significant damage to my esophagus, and now we have to figure it out about so those are kind of a quick, you know, two or three minute rundown of things. And like I said, they often interact. And it’s sometimes hard to just pinpoint, which a lot of doctors you know, it’s like, they only want to talk about your acid reflux, or they only want to talk about your foot surgery or this or that they don’t think about how you know that song, what is it like your knee bones connected to your like bone, like they, they just like, don’t look at you as a whole person they look at like their one issue. So which you

Stephie
would think would literally be like a cornerstone of being a doctor. Apparently not

Jenna
details stuffy Details,

Stephie
details, I asked him much of doctors. So I mean, you know, like, just from all the stuff that you just said, like there’s obviously so many different facets to life with a chronic illness, much less one where you have interconnected chronic illness and chronic pain and different all these different conditions. But what are the struggles, like you said, you know, there you go in and they want to talk about one thing, but they don’t necessarily want to talk about this other thing. And that can really lead to a struggle in simply getting a diagnosis. Like I don’t I don’t think that people who are generally healthy really understand how hard getting a diagnosis is and how much of a relief getting a diagnosis can be even if that’s not a great diagnosis, like I lived and struggled with endometriosis for close to 15 years before I had a diagnosis. And even though that’s not a thing you want, you know, even though you’re not as exciting and be like I want to have Endo. Having that on my chart was such a relief because I had answers. And even like for me when I was 21 and got sick and ultimately was diagnosed with ulcerative colitis, like it was a pretty cut and dry, like obvious that this is what I had. And yet it still took weeks to actually be given that diagnosis. So all that to say like, it can be super complicated. So can you share what getting some of these diagnoses has been like for you? I’m sure some of them were easier than others to get and how you’ve had to advocate for yourself in that process because lord knows you have to Right,

Jenna
yes. Unfortunately, the squeaky wheel gets the oil in our health care system Stephie I totally hear you on like, kind of the validation that comes with getting a diagnosis. You know, even when it doesn’t have a cure, or there aren’t really things that you can even do to treat it, per se, but I have found that getting diagnoses, one validate my experience, but to make it so that doctors actually start to listen to me when it’s written down. Because I have been made to feel crazy. For years, since I was a little kid, like, doctors just really disregarded me a lot of dismissal or, you know, like, oh, you know, you’re healthy, you’re fine, like, come back to me in six months, if it’s still bothering you. And that was the end of the conversation. Um, so having things written down has been really nice, because I can like, definitively say, Oh, hey, but what about this, like condition that I have? Or what about how is this affecting this or what medication interactions might happen here? And then they go, oh, shoot, she kind of knows what’s happening here. My stepmom actually laughs She was a physician for or she still is, she’s retired, but now working part time. And she always says she’s like, oh, yeah, you’ve been over medicalized, you don’t take any shit anymore. And, and so, I mean, so it’s helpful to have it written down. However, even with that, like, you know, in my list of I can go into my online, you know, medical website and stuff and see my ongoing list of conditions, and it’s getting longer and longer, unfortunately. Or fortunately, I guess, because it’s written down, but they, so often, I’ll go to a new doctor, because it’s almost like a game of hot potato. Like doctors, especially primary cares. Oh, my God. primary caregivers are like, the gatekeepers, and for whatever reason, they just, like don’t want you to interact with specialists, even when you have documented needs for it. And they’ll just look at me and be like, Oh, you’re healthy, 32 year old woman, I’m sure it’s nothing. And I’m like, Um, can you please just even look at my chart, like, just take a quick glance like me, like, don’t have to get into detail, just like one quick skim. And you’ll see there’s like multiple things going on. Because they constantly labor just look at me, and they’ll like, and I’m like, You’re a doctor, there is no look to disability or sickness, like, what are you doing just looking at me and being like, I’ve never met you before you look healthy, like what the actual hell? So it’s, it’s frustrating. I feel like sometimes I’ll take a step forward and two steps back and, you know, or I’ll have like inconsistent or cyclical labs. And so there’ll be like an or they’re just like, right outside the normal range, the doctors will be like, come back in a year. You know, it’s like this constant putting off instead of really trying to dig in. And luckily, I have found a few specialists who have just taken me on and been like, oh my gosh, how have we not seen you sir? sooner? Let’s get to the bottom of this. And they have been my real advocates. And I can’t tell you like when that happens, like I was just crying in my endo doctor’s office just recently out of happiness. I was like, Thank you like, you make me feel seen.

Stephie
Yes, I that happened for me. The first time I saw my gastroenterologist because I had been through the wringer. I think at that point, I had been diagnosed for like two years, and was pretty much sick. The entirety of that two years, and they had just had me on these incredibly high doses of steroids. They were like, well, we don’t know what else to do with you. So here’s a shitload of steroids like we’re talking like 60 milligrams. Oh my god, prednisone a day.

Jenna
Were you just insane two years?

Stephie
Oh, I was I was totally crazy person. I couldn’t sleep for me. I basically didn’t sleep for two years. It was terrible. And I was finishing up college and like starting like my first like year after college after that. Anyway, I was a hot mess. And I walked into Dr. Swanson’s office and he was like, there is no reason that you should have been on any steroids much less this much like there’s all this research to suggest that it actually is doing more harm than good. Like it was so validating to have him say like, Oh, God, no, why we’re tapering you off, and you’re never going back on that shit again. Like I’m never gonna do that to you. I was I was like, I could kiss you right now. Like, you’re like, Please never leave me. I will follow you to the ends of the earth. Please never ever ever leave me.

Jenna
Yeah, I it is truly it feels like you’ve hit the lottery when you find a good doctor. Yeah, and actually, one of my doctors recently was referencing another doctor who shall not be named. And she goes, yeah, he’s a shithead. He doesn’t know what he’s talking about. And I was like, I we’re already friends like this is gonna be good.

Stephie
So I feel that.

Megan
So getting a diagnosis is incredibly important, obviously, but it’s really just the beginning of the road. Good. So what has been your experience with learning to accept that you will live the rest of your life with chronic conditions?

Jenna
Yeah, it’s, it’s complex. Honestly, I think, in the beginning, it was validating, or constantly, it’s validating right to have a name to what’s going on to the pain that’s happening in your body, or strange symptoms that doctors couldn’t figure out before. But there’s also a lot of like, a grieving process almost. And even just saying that I’ve had to overcome this idea of like, Oh, I’m being dramatic. You know, because people are like, Oh, you’re still living your life, you have all this and that you’re not dying. There’s always this like, comparison of it could be worse. But really, I’ve come to terms with like, Thank you therapy, that, you know, my life is gonna look different than what I thought, especially around, you know, knowing that growing, my family is going to look really different than my husband and I originally expected, I know, I’m going to be spending countless hours in tests, and then getting procedures done poked and prodded, more surgeries, you know, just really, there’s just so much exhaustion that comes with constantly having medical interventions or making medical decisions. And I’ve really had to learn to like, live in duality. Where I can, you know, feel two things at once, or multiple things at once. Even if they feel conflicting, or even opposite of each other. Like, I can be so angry at my body or, you know, frustrated or, you know, the quote, like bad emotions that people like to steer away from in society. But then also be extremely grateful that, like, I have access to, you know, medical health insurance, you know, I watched my mom struggled with chronic illness my whole life, and she didn’t have health insurance. And so I know, like, there’s other you know, like, I know, it could be worse, or, like, I have extreme privilege in many ways, and I’m an educated white woman seeking care, like, I know, I’m gonna be taken a little bit more a lot more seriously, unfortunately, than, say, a woman of color, or someone who doesn’t speak English fluently. Um, so there’s a lot of different feelings I have constantly and again, it’s kind of just like oscillating between grateful for what my body can still do. While being extremely frustrated, and kind of the chronicity of it all just having so much pain for so long. There’s some days where I’m like, oh, yeah, this is like totally normal, and might like, this is fine, this is fine. And then you’ll get hit with a bad flare, or you’re just exhausted. And you’re like, fuck, like, when is this going to end? And you’re like, oh, yeah, it’s not going to. Yeah. And so I’ve really kind of started to lean more into the kind of newer idea of like, body neutrality versus body positivity, because for a long time, I had a lot of hatred towards my body, because I kept seeing is like, failing me. And again, like a lot, everything I’ve had, except for when I’ve had casts on and stuff has been invisible. And even as a kid, like I was, I was disabled, and I wasn’t allowed to run or anything, and all the kids would be like, Oh, my God, you’re so lucky that you don’t have to run. And I was like, You’re so lucky that you can walk and not be in excruciating pain. You know. So it was just, it’s getting to the point where now I can be like, you know, what, thank you to my body for doing what it can, or all the times that it’s, you know, kept me alive, literally. But also knowing that I don’t have to love it all the time. So that’s been really helpful. But there’s just so many mixed up emotions. And I would say in the last year or two, especially as I’ve again, kind of stepped into owning my experiences and being a little bit more open and vocal about what’s actually going on. Because I always thought I had to, like, you know, hide it and toughed it out and not let anyone know, because I was afraid to be dramatic or whatever, um, that I can just kind of slow down. And in doing so, and being more open, you know, I’ve, it’s been an interesting kind of litmus test for what kind of relationships I still want in my life. There are people in my life who I will always love, but who can’t really handle my chronic illnesses or pain, you know, they just want me to have a good attitude and pray it away, or whatever it might be, versus the people who show up and say, Wow, this seems really hard. How are you doing? Like, let me take something off your plate, you know, and just, they may not understand it, but they try to be present for it. And so it’s just been kind of an interesting division, I would say of Who do I really trust with my actual real feelings? And who might I maybe move more to a surface level interaction. So it’s, it’s very dynamic, as is you know, living with chronic illness and pain and things change data. A, but it’s definitely been an adjustment for sure. Just even around, you know,

like, where I put my worth, I used to put so much of my identity into like, my academic or professional success and like I had to be the best or this or that or I had to perform in order to be worthy. And so I’ve done a lot of work around like, okay, where, where is my internal ableism? Where can I break this down, I don’t have to be productive to be worthy. So it’s an ongoing thing I am, you know, there’s no destination to arrive at, but some days are better than others, some months are better than others. And then there, you sometimes get hit out of the blue with a weird emotional day, or a big pain flare, and you’re in the bathtub crying and, you know, really pissed off at the world. So it just depends.

Stephie
I would love to keep kind of on this, this thought of the internalized ableism I’d love to chat real quick about this is actually not in our notes. But it’s, it’s came up as you were talking. I would love to chat about your relationship with the word disabled. Because that’s been, it’s been a really interesting journey for me. Because by ADA definition, I am disabled, I have an entire system of organs, that does not work. And so it’s intricate. It’s, it’s interesting, because, like you for sure, don’t look at me and think like, oh, she is disabled. I don’t. And it’s been really interesting, because I don’t necessarily feel like I am. But I am. And it’s been a it’s an interesting like learning and unlearning of what does someone who is disabled look like? What is disability look like? What does that mean? So I’m just wondering if if you’ve had a similar journey. I mean, you know, I know that as a kid, like, you know, having all of these surgeries and you know, decreased mobility and having to use different mobility aids throughout your life, like you have sort of woven in and out of visible versus invisible illness and disability. So I’m really curious to hear like, kind of your thoughts on just like, grappling with the fact that you are disabled?

Jenna
Yeah, yeah. And, I mean, it took a while for me to even say like, oh, yeah, I am disabled. Because basically, it’s like imposter syndrome. It’s like, oh, but I’m not just like, I’m not sick enough. Or I’m not, like disabled enough. And whatever that is, it’s like these weird social pressures. And it just, I don’t even know how to describe it. It’s like, there’s just so many micro aggressions constantly. You know, implicit explicit, like, a, you know, it’s a very, children are not always kind adults are not always kind. And they expect you to, like they expect their world understanding to be like, Oh, I look at you and you are, you know, fit into my box of what disabled is. And one of the things that always kills me is when people say like, oh, but you don’t look sick, or like, and I’m like, that’s not that’s not a compliment. Like, they say it as if like, oh, but you look great. And like, what do you think a sick person looks like? Do I need to you know, have lost my hair or be like, extremely frail? Like, there are so many need to

Stephie
look like me my senior year of college.

Jenna
Notice, horrible. Yeah, send me some pictures.

Stephie
Are you sick? You look terrible. And that was the

Jenna
that also is not really needed? Yeah. It’s like people, they should just like, Shut up sometimes. You know, like, we don’t some thoughts are inside thoughts. They don’t need to come on the outside. But yeah, it was interesting, too. Because, like, as I look back on, you know, times where I’ve been more visibly disabled, right. Like, I had a disabled placard for years. And and whenever I had castes or crutches, or you know, whatever mobility aid I had, people were like, oh, yeah, clearly she she is disabled. And they also assumed that I had just, like, broken my ankle and soccer or something. And I was like, I’ve never run a mile. That’s not possible. But yeah, it’s so and then when I have all these invisible things. It’s like, I almost feel like I have to prove myself constantly. But then at the same time and fighting this narrative, I’m like, Oh, you shit. Like, I don’t need to prove anything to you, you know. Um, but I have had, you know, even when I had my disabled placard, which again, there can be so many reasons why someone has that. I have been, like, yelled at by adult men and women so many times. Like when I was in college, I had my placard and I would park downtown and it was so painful to walk. And they’d be like, you can’t take that place like you’re just using your grandma’s ball and you know, like swearing at me and all this stuff. And I like at the first few times, I was like Oh my god, this is horrible. Like, should I move my car and then after a while, it’s like, you know, I kind of just yell back like, Okay cool way to make assumptions or you know, whatever, we’re whatever mood I was in how spicy I felt that day, you know? So it’s, it’s really weird. And again, it’s like this constant battle feeling like you have to almost like, prove it. Which we should never have to prove if we’re sick or not. Or like, What weird test is there to be like? Yep, yep. Okay, that’s enough. Yep, you hit the bar, you’re now disabled. So it’s, it’s just so frustrating. And then there’s all the like, layers of, you know, who do you tell? And when, and again, even just in personal relationships, but then professionally, it’s like, how do you navigate all that? And it’s just such a mess. So, yeah.

Megan
Like as, as someone who does not have any of these issues, I feel like, you do not owe it to other people to tell them like what your problem is, like, it is your personal experience. And if you have an issue, if you have it, like it’s not, right, it’s not something you need to justify. But at the same time, I’m curious how you do explain it to people, for instance, you have a chronic pain? How do you explain that to someone like me? Who? Not MEAP? Specifically, that would be like, Oh, I have headaches too. Like how? How do you nuance that to people when you do need them to understand,

Jenna
honestly, it feels kind of like a different language that I’ve learned, like, there’s almost an art to it. And it’s completely case by case. Like, I can get a vibe real quick, where I’m like, Alright, I’m not telling this person, anything, you know, or I’ll be like, yeah, it’s actually very medically complex, like, but you not have all those Niners or whatever, you know, like, What are you cooking this weekend? Like, just change the subject because I’m like, I don’t have the mental capacity, or like, I’m not doing this emotional labor for you today. Like, I don’t need to explain this to you. And then there are people like friends who are genuinely curious, like, Oh, my God, what is it like, and I’m like, it’s like waking up when you have a bad flu, or you sprained your ankle, or whatever. It’s like, that’s how I feel waking up every day. Like, my baseline is like, like the pain scale to me, you know, tangent, real quick pain scales, whenever the doctors asked are like, complete bullshit to me, for a lot of reasons. It’s so subjective. But also, like, my baseline is, like, usually somewhat like a healthy person’s four or five, or like, you know, what, what might cause say a friend to call in sick to work is how I go to work every day. And even just saying that out loud. Again, it’s like this constant narrative that I have to battle because I’m like, Oh, my God, I sound so dramatic saying that. And it’s like, what is it with the idea that like, I’m being dramatic, or whatever, and my husband is constantly telling me now like, over and over, it’s like, Jenna, it’s not dramatic, it’s your reality. But again, I’ve been made to feel so just invalidated and questioned and made to feel crazy. And again, in the medical field, like doctors that made me feel that way, but also my peers and even family members. Because it can be really hard, I think, for people to wrap their head around something being chronic, if their experience has really only been like, Oh, I get sick, and I get better, or I get injured, and I heal. Um, so it’s really it’s like a whole different kind of reality, like a whole new view. So it is hard to explain. And again, I I’ve kind of gotten this art down of when, who to share some of that with, but especially based on people’s responses, I quickly adjust if they’re going in the realm of Oh, but at least you don’t have this or, you know, everything happens for a reason, then I’m like, Alright, that conversation is done, you know. So it’s really, it’s an very nuanced topic. And honestly, it’s like, I wish I had just like a straightforward formula. But that goes into the, you know, the many emotional loads that people with chronic illness and pain up to carry is like, constantly navigating in situations that other people don’t think about, you know, for a long time, I really felt like I had, I was living like a double life. And I just, that’s again, one of the reasons why I am stepping into it now because it was fucking exhausting to pretend to be healthy all the time to not only try to keep up with my healthy peers or coworkers or whatever, but make sure I like excelled to make myself like indispensable and a high performer so that, you know, heaven forbid if I do get sick or this or that, like I have a credibility bank I can pull from and they won’t think I’m just flaky or whatever. So it’s, it’s just, you know, a lot of tiring things and so I’ve kind of now said, Fuck it. I am going to be honest about where I’m at to an extent So of course, without knowing anyone anything, but I’m not, I’m not going to put on this face anymore where I’m pretending that everything is okay. I’m not going to pretend that I’m not in pain, like I hope that has in me up in Atlanta in the in the hospital many times where I just try to blend in, you know, go for fun weekend away or something with girlfriends and then I come home and end up in the ER. So I’m just I’m done doing that.

Stephie
I found too that like, some things are easier to explain than others. Like I do think like, like, for example, endo is kind of hard because it is so related to like pain levels, and you know, you get people that are like, Oh, well, yeah, I also have bad periods. I also kind of want to be like, I mean, not the same thing. But also like, technically, that’s not really you’re not really supposed to have that battle period. So like, maybe I should also get checked out. But then like, compared

Jenna
it’s common, but not normal, like,

Stephie
um, but then like, versus the ulcerative colitis where, like, over the years, I finally just like, I just, I’ve just lost all like, what fucks basically. And if someone is just like really being like, Whatever, I’ll just be like, Oh, well, I just literally spent 75% of my day shitting my brains out. And then they’re like, oh, yeah, so

Jenna
yeah, I used to, like locked off on my calendar at work to be like, Oh, that’s gonna be a bad day. I’m gonna make it seem like I’m in meetings all day. Right. Exactly. So yeah, me and the toilet.

Stephie
Exactly. porcelain throne. This is why we invested in good toilet paper. Yeah. But yeah, like, it’s like, some of those things are easier to like, get people to at least like it’s even if they don’t understand at least get them to shut the fuck yeah. About.

Jenna
Yeah. Or like, like with Endo. It’s like, Oh, yeah. Especially with women, women who are like who men straight. They’re like, Oh, yeah, I’ve had some bad periods or like cramps or this or that like, but it’s like, it’s so much more than that. It’s a full body inflammatory disease that, you know, acts almost like a cancer like it metastasizes. It’s has its own sorts of blood vessels and blood supply takes over organs like Oh, my organs were like, stuck together and, like have masks on them and like, attached to my abdominal wall. And like, this is not just a bad period. This is literally like destroying your insides. And it grows everywhere. Like, it’s just and then even with, like my hypermobility and stuff, people are like, Oh my gosh, what I would give to be more flexible. And I’m like, No, this it’s not the same. It’s like a constant dislocation and then your muscles like, try to hold it in place. So then you get really oddly tight and like, it’s really painful. Like they’re, you know, there’s like, so many people are always trying to find the good in situations or like, Oh, I wish I had that. Or, or, or they’re just trying to downplay it. Like, again, like with the Oh, yeah, like everyone gets a bad period. Like what, you know, suck it up kind of thing, like, rub some dirt in it. Right?

Stephie
She might all fuck off. So, all right, so you you did bring up like jobs and workplaces. And this is like one of my biggest chronic illness rant points. I would love to just chat about our experiences in like traditional workplace settings because I think that I think that that COVID really threw this into stark relief that the traditional workplace is not fucking set up for disabled people No, not fucking set up for chronically ill people that like traditional nine to five, you sit your ass in your office, you sit your ass in your cubicle for eight hours a day and you only get up for your 30 minute lunch break and your 15 Minute like afternoon break That’s fucking set up for people who are not healthy, able bodied people, or like, neurotypical people also throw that in there, like, made from neurodiverse people. So basically, it’s not set up for like, solid, like, probably 80% of the

Jenna
population also not really made for parents, like, let’s throw that into, you know, just basically, like, if you’re a living human being with any kind of, like, dynamic piece of your life, it’s not made for you.

Stephie
And like, yes, there are there, you know, there are legal protections like in place, technically, you know, that they technically that employers have to make accommodations for you. But you know, in my experience, so my biggest accommodation that I always have to ask for, is I my my main medication is given to me via IV infusion every now it’s every four weeks. It used to be every six weeks and we’ve had to move it up to every four weeks and it takes like It the actual infusion itself of the medication is two hours. But it takes like the whole appointment is basically the whole morning because they have to go in and they have to weigh you and measure the right medication and do pre meds and get you set up and blah, blah, blah. And then the meds themselves, like knock me out the rest of the day. Like, I feel like I have the flu, they give me this IV, Benadryl and knocks me out the rest of the day. So infusion days are really, really hard. And it’s, it’s a whole day, and I really can’t work. I learned that early on, like, I cannot basically plan to do anything the rest of the day on an infusion day. And so I always have to ask and said, Well, I want to ask, I say, this is the accommodation that I need every four weeks. And I always I always try to be as accommodating to my employer as possible by scheduling them on Fridays, which are typically not as busy. And you know, and also give some consistency. But I’ll say like, every four weeks, I need this day off, I will do what I can if it’s absolutely necessary, but I pretty much need to just consider that I’m not around and I’m not available. And while my employers have always given me that accommodation, the the the accommodation of like, I’m going to then respect that you don’t feel good, and that I need to leave you alone. I’m not going to act bratty about the fact that I have to work around this accommodation is not always the case.

Jenna
What do you mean, you’re not just like on vacation on all those Fridays that you’re like, it’s so much fun, right?

Stephie
I’m not at the beach. We’re, like so much fun having them just like, first of all have to like try to get the IV in my arm sometimes multiple times because I have shitty vase and like to feel like shit the rest of the day. Oh, it seems like a lot of fun to me. Right? Yeah. Like I’m like out here, like, Oh, I’m going shopping, right? I’m sort of

Jenna
Yeah, I was on disability earlier this year. And the amount of people who were like, hope you’re enjoying your time off. I was like, No, I feel like actual shit. This is not fun at

Stephie
all. No household things. Cool. Yeah. It’s

Jenna
like people who say like paternity or maternity leave is like, oh, enjoy your vacation. It’s like, okay, yeah, let me just adjust to life with a whole new human being okay.

Stephie
And if you’re breastfeeding, that’s like, chewing your tits off. Oh, like Meghan breastfed? Yeah, I don’t know. It’s just, it’s really, I think that I do think that COVID has been good in giving a better understanding of the fact that people can work from home, like, all of these years, we were just willfully ignoring the fact that you can do a whole last job from home, right, without ever setting foot in an office space. And we were just unwilling to give disabled people that accommodation,

Jenna
right. And I think about like a fight. Like two jobs ago, I was I had a really international portfolio of teams I was supporting. And, you know, I would be in the office talking to people in Southeast Asia or in South America or wherever. And I’m like, Why do I have to be here to do this? You know, like, I mean, granted, sometimes I was at home doing it, because it would be like a 4am call or 10pm call. So then they’d be like, Okay, you can take it from home. I was like, well, thank you, though, you know, who really pulled out all the stops for me there. Yeah, it’s just so interesting. And being home for the last two and a half years, I was able to work remotely for my last job. And it was so interesting, not having to fake it, like on my bad days. Because in most of my roles, I’ve done a lot of like workshops and facilitating and a community kind of work. Or, like, interacting with different elected officials or executives. And so I’ve always had to, like be on my A game. And so I got so good at faking, that I was not in pain, and like, I might just like do a quick throw up in the bathroom, and like, run back on over and be like, Alright, guys, next agenda item. And then now being remote, you know, here and, of course, I was still facilitating quite a bit, but I could turn off my camera or, you know, share my screen or whatever. Or if I wasn’t the facilitator, half the time I’d be in fetal position. And then you know, like, press unmute and be like, yep, that actually the new legislation around that is bah, bah, blah, and then, like, mute again and lay back down. And that was such a godsend to be able to just do what my body needed and still be highly productive. You know, I was managing many projects, but just to be like, Oh, my God, I don’t have to put on this face. I don’t have to be wearing business attire. Like, I can just be my sweat pants, which was such a relief, but then at the same time, my most recent job was pretty. I mean, it was I was working for the government. And so it was like you had very set hours. There. I mean, just the idea of working remotely was like a big leap for many government agencies. And so that that I feel like told really changed the game for many folks. But the idea of maybe having more of a flexible schedule wasn’t really an option. And, for me, like a lot of my energy or just even brain capacity, like many of my issues in the last year or so, I mean, physical, of course, but were really presenting cognitively. And I was having so much brain fog, extreme fatigue, and it was unpredictable. So like, I might have to be on a call at 8am. But like, I feel like I’m dying. But then I get such a burst of like, Alright, I’m healthy, I have energy at like, 5pm When everyone else logs off. So it’s just like, needing accommodations like that, where it’s like, can I work when, you know, my body’s working for me and trying to explain that to people that it might be unpredictable, and trying to like, now as I look for new jobs, like, have it be more deliverable based, because I’ve never dropped the ball. I’ve never like not gotten a deliverable done. Or, you know, I was doing so much writing in my last job, whether it be grant proposals or policies or whatever. And, like, I just couldn’t do that all the time, within traditional business hours. So now, I’m definitely looking for that kind of deliverable base, not expectation that it’s just like butts in the seat kind of old school mentality, like, I want them to hopefully value me for the expertise that I can bring. But also know that I’m a human, and I’m balancing a lot of different things. And that being said, I really struggle with like, how much do you tell to an employer because like you said, Stuffy, it’s like, technically there are protections, right? But that doesn’t mean that you’re going to, you know, like you might be like looked past for a new opportunity, because maybe it’s going to involve some travel or, or it’s going to have consistent morning meetings or whatever. And then that’s like a dean in your career path.

Stephie
Whatever excuse they’ll give Yes, and no, that that’s the really the thing.

Jenna
Yeah, and I mean, I worked my ass off for years to, like I said earlier, like to be kind of indispensable, and part of that was, you know, a big piece of fear from, from chronic illness, like wanting that credibility bank, or whatever you want to call it. But also, like, I, I came from so much fear of like, I need to have good health insurance, I need to make good money, like I grew up in a low income, single mom household, you know, like, all these things like I was like, I have to protect myself, I have to have stability. And if I do anything to show any sign of weakness like that could be ripped out from under me at any time. Which just is not an option when you have chronic illness, because you need that health insurance. And now luckily, you know, I’m married, and systems are set up where if you’re married, you can go on your partner’s insurance. So I’m taking a little bit of time off, and I have never felt more lucky to be in a position financially, you know, access to care, all that stuff to be able to actually take a few months off and really kind of reevaluate what I’m looking for in a new job. And make sure that I don’t end up somewhere where I’m going to have the struggles I’ve had in the past, and not just be caught up in that like hustle culture or the grind and like, I want to be somewhere where they value. I mean, I’ve had wonderful bosses and teams don’t get me wrong, but really value that not everything is black and white. And we can do things differently moving forward. And I can just abled people can still add great value, even if it doesn’t look the exact same as their co workers.

Stephie
1,000%. I would also add to like, you and I know what our legal rights are, like, we have familiarized ourselves with what, what is legally required of employers. And I actually just I like, I just experienced this with one of my friends who was pregnant recently. And like, she, they were like, weren’t necessarily making an accommodation for her. And I was like, no, like, I literally went and I pulled it up. And I was like, by law, they have to the employer has to do XY and Z for you because you’re pregnant. She was like, Oh, wow. I was like, Yeah, I you know, I’ve had to familiarize myself with this. And but it’s stuff I didn’t even like know, when I was first diagnosed. And because I was, so it was I was diagnosed right before my senior year of college. And I ended up being forced to quit from my RA job because they didn’t want to make the accommodations for me. And it because they basically sat me down and they said, Well, you can resign right now, or we will fire you. Cheese. And I did not know at the time that what they were doing was completely illegal. I later found out from my uncle, who’s a corporate lawyer who specializes in, like employment stuff that he was like, oh, yeah, that’s super illegal. Like you could sue the pants off of them. And I was like, I don’t have the energy to do that. But

Jenna
yeah, access to resources to pay a lawyer to do that. Like Right,

Stephie
exactly. Yeah. Now, I would have chewed their ass of one side down the other, spit them out. I’d have taken them For all they were worth, but at the time, I had no idea, right? And so, you know, like, there’s just a level of, you know, and I think after you’ve, after you’ve lived with this stuff for a number of years, you know, you sort of figure it out. But also there’s a level of privilege that, you know, you have the ability to research these things, and you have access to the internet. Like, I think, like, you know, it is just, I just want to keep reiterating that Jenna and I have very specific privileges that yeah, have aided us, even though we’ve been through some shitty things. No pun intended, in my case. Like, we do have a lot of privilege attached to us that has made things easier along the way, in some ways.

Jenna
Oh, yeah. Oh, absolutely. And like, I just think, too, I’m like, Okay, I, you know, I am a white woman, middle income, like, I have a graduate degree, you know, like all these things that like, add to my privilege. And I’ve worked in quote, unquote, like professional settings, whether it be corporate America, or the government, or whatever. And I’ve often had to very much educate HR. And I’ve learned that HR is not necessarily on the side of the employees, they are there to protect the company, or the help we know it the organization. And like, well, technically we there are these laws, doesn’t mean you’re not going to piss off the people when you actually ask for the accommodations. And oh, yeah, it can be real weird. But yeah, I think about like, what about the single mom or dad who’s working at McDonald’s and is struggling, you know, and they get in California, legally, like three sick days a year? Like, are you kidding me? And whether or not they have access to lawyers, or, like you said, like looking these things up, and even just trying to make sense of like, some of the legal jargon that I’ve gone through, and I’m like, What the hell, and I’ll like, send it to some of my lawyer friends. And I’m like, I have lawyer friends, I can call you know, it’s just, there’s so it’s so layered and so complex. And it should be straightforward in many instances, but there are so many loopholes and workarounds, or like, weird technicalities, that employers can basically use against you, right. And it’s, it’s really icky. And so that’s where, you know, I was saying before, it’s like, wanting to own it, but then also, and knowing you are legally allowed to have accommodations, but then also like, not wanting to limit yourself, or have any reason to, like, be on the chopping block for them, whether it’s a project or your actual job, right. So I just yeah, it’s that weird feeling of like, I feel so lucky, so privileged. And then also like, fuck, we shouldn’t still be having these conversations.

Megan
I’m curious if you’re seeing aside from the shift to working from home that everyone, everyone, mostly I should say, is very much accepting of working from home as they should be? Because also we get more work done at home. Yeah. I’m curious if you are seeing a gradual shift at all in people’s perceptions towards chronic illness.

Jenna
Hmm, so I think on paper, yes. But I think in practicality or execution, no, I think people I think people are trying and by people, I mean, some people, I think large organizations, they know, they like have to, almost, you know, or like, just to be competitive. If they’re an employer, they have to often say this, or that or have groups or policies or whatever. But when rubber hits the road, like they want productivity, and they want it to be predictable. And then again, even like, just in my personal life, I like I said, like, I’ve it’s kind of been a dividing factor of like, who is willing to step up and learn or unlearn like Stephie was saying, like, it’s a really an interesting kind of mental battle of like, learning a whole new language, trying to empathize with different people. And, and then there’s the people who just kind of don’t want to go there and just want to gloss it over and like, be like, hope you’re doing better get well soon. And you’re like, thanks, I won’t. So it’s just it’s, it’s kind of all over the place. I want to say that, like, my optimistic side wants to say yes, but then again, what I see on the internet, what I see on my newsfeed, etc. That’s all curated on algorithms to show me what I already see. Right? So at my experiences, it’s completely mixed. But with people that run in some similar circles, or who are also in the chronic illness community, or who have peep loved ones who are, I do think that there is an expanding definition and acceptance of understanding that pain or illnesses can be very complex and come in, you know, present in different ways. So that has been really positive For me, in slowly letting people in on my reality would even like doing this today it was, you know, I had to like kind of build myself up, I was like, oh my god, this is gonna be the more honest I’ve ever been about anything going on in my body with. And now it’s like going to be public. So it’s just it’s all dependent. But I think, in general, we’re leaning on an arc towards more understanding and acceptance, personally, professionally, very TBD.

Stephie
You know, I think I think COVID Two has been a really interesting peek into showing us, us been the chronically ill, and disabled, human beings of the world. Who can be trusted and who can’t, based on their response to well, it’s just, it’s just the people with comorbidities who die. And you’re like, you’re like, hi, that’s me. You know, where you literally have family members who are like, whatever, it’s more important for me to not mask or not get a vaccine than it is to do the bare fucking minimum,

Jenna
right? While we’re sitting here with like, comorbidities and medicines that like put you into immunocompromised categories like No, right. And

Stephie
like literally having to opt out of family activities or holidays, or not go to things because people don’t give a flying fuck. It’s been really interesting to see that. And then on the other hand, then, on the other hand, to see the people who are more than willing to keep you safe. Yeah, people who are more than willing to be your bubble, people who are willing to ask are willing to take tests who are excited to get vaccinated, because they know that they’re protecting themselves and you like, yeah, it’s been very interesting to see those two different sides of it.

Jenna
Yeah. And I think that’s where some of my, like, pessimism has come from, and or I guess, mixed, right? Like, like, you were saying, like the people, it’s a clear division, like the people who want to show up and protect you. And then the people who are like, whatever. And I guess, as a whole I’ve just been on the more like, pessimistic and depressed side of, you know, especially what the United States has done in proving like, you know, what, people are going to do what they want to do, and they’re acting selfish, and they’re not showing up for their community. And that, to me, has felt like a big burn for people who are immunocompromised, or who are living, you know, with disabilities, because it’s like, wow, at the end of the day, people are just gonna look out for themselves. And that’s kind of been a larger message I’ve received. And then of course, there are people in our lives, who I think who have just blown me away with showing up and being careful and safe. But it’s been a real eye opener. And that’s where I think I am very questionable about like, you know, we maybe we’ve won some battles and lost some professionally because workplaces are a little more accommodating here or there with different kinds of things or flexibility. But then at the same time, you’ve seen as a whole of society, we’ve kind of been like, Yeah, screw it. Let’s move on to their lives. So it’s board. Yeah. So I don’t know I have so many mixed feelings and changes day to day where if I’m like, Oh, I’m having a hopeful day today. Or like, oh, shit, burn it down. So yeah.

Stephie
I mean, the fact that you can have hopeful days is a positive. I try you don’t want to just burn it down every fucking I

Jenna
mean, it has been my phrase of this year. It might sounds terrible, but I get this like, really, like hoarse voice and my two phrases have been like, I hate everyone and burn it down. Yeah, and then like, on the outside, everyone like sees me and they’re like, Oh, look at this bubbly, happy human. And I’m like, oh, yeah, I swear I can be nice. I’m not just a total ogre. So

Stephie
okay, I just want to hit on like one more topic before we kind of get to the end and some like words of advice. I was love. There’s so many ways we could go with like, other things. We could talk forever back again, we literally cut but I’d love to just kind of chat about like the well intended but ultimately harmful questions that people say and ask.

Jenna
Yeah, yeah, I mean, just as a little bit of background, I mean, I think there’s already so much like guilt or fear of appearing flaky or whatever, like that comes with navigating disability and chronic illness. This idea that we like always have to show up 100% And or that you know, things have to be split 5050 or fair whatever. Like, I always have so much spirit, not when my good friends but like, you know if like, not being like appearing selfish or being a bad friend and then so when people say things or bad sister or whatever it might be, you know, fill in the blank. I always fear like that. I’m going to be a broken record. Record, or like, even when I’m just trying to take care of myself. And so then when people say things that often are well intended, but really just kind of reinforced that fear of mine, it just constant, it’s like that. It’s reinforcing this messaging that I’ve had my whole life that like, Your worth is in your productivity, you have to be positive, you have to show up all the time. Taking care of yourself is selfish. And it’s like, you know, I’ve been fighting that again, thank you therapy, I cannot emphasize that enough. Anyone going through something similar, please get a good therapist. But it’s hard when they’re, you know, saying like, Oh, like, they’re like, a Ha, ha, I hear you. Like, they’re asking how you’re doing? And they’re like, Okay, well, you know, just stay positive. Just and I’m like, so you’re just okay. But that’s hard when, you know, I don’t have an answer right now. Or that, like someone’s not, you know, they’re not just saying like, wow, that sounds difficult. Or, again, like the Get Well, soon. It’s like, Do you not understand the nature of the word chronic? Like, I might feel better tomorrow a little bit, and then I might have a really hard day, the next day or like, yeah, the whole don’t, you don’t look sick? Or, My God, this one kills me that at least you don’t have this. And I’m like, Okay, you guys, I thought we were done with comparative suffering. Like, it can, yes, I’m not terminal, but like, it can still really suck to be going through this pain, you know, like, what is this weird, like checklist of things to be accepted? Or be like, Oh, okay, yeah, you don’t have to come to that social event. It’s like, I should just be able to say no, like, I’m not feeling well, or, like, catch you next time. Or can we reschedule without feeling this like immense guilt, and, you know, people checking in on you, and, again, well intentioned, but can cause real harm and reinforce the idea that we’re still expected to put on a smile all the time and make things rosier than they might actually be. I think people are really uncomfortable sitting with someone’s Messier feelings or experiences, unless they’ve really practiced that I think, as a culture, we really shy away from anger, grief, frustration, you know, anything that’s not on the positive end of the spectrum, or whatever. But it’s like, all of those feelings are human experiences, and completely valid. So all that to say, I don’t know if I’m making sense here, but it’s just I just wish people would kind of stop before they said, like, definitive phrases, and instead, ask more open ended questions or just even just say, like, hey, if they, you know, if they don’t want to get into it, that can be like, I really hope that you’re having your better days or outweighing your hard days, or whatever, like, kind of acknowledging that we have heard taste, and that it’s not like just gonna magically get better. I mean, I could go on and on, but people again, say the weirdest shit and, and like, it’s almost like, I’m like, like I said earlier, it’s like, just keep that to yourself. Like why or, or it’s like, oddly invasive, or just brushes it over. Like, it’s just, you know, everyone’s different. And, and even if they, of course, they’re not trying to be malicious like that, I’d immediately be like, alright, we’re not friends anymore. But it’s like even even well intentioned things, right? We see this with anti racism work. We see this with all sorts of microaggressions or like sexism, whatever, it’s like, you can be well intended and cause real harm. I mean, even if you like, step on my foot on accident, you’re still gonna say sorry, right? So like, if you step on my feelings, or invalidate my experiences, or expect me to show up in a certain way, if you care about me, like, try to do some work and learn about what it might be like, and you can come back and do better.

Stephie
Yeah. So as we kind of close out here. Do you have any words of advice for someone who is, you know, facing a new diagnosis?

Jenna
Yes, and no, because obviously, each diagnosis is different. Everyone’s experiences are different. So I don’t want to say one thing. Everything was with a grain of salt, right? But I would definitely say like, find your community. I’ve been blown away. I kind of like hate social media. But I’ve been blown away. And one of the reasons why I stay on it is because of the online community of many of the illnesses that I have. And being able to share experiences, and support with each other has been hugely helpful for me. And then similarly, again, around the support, like if you can afford it, invest in a therapist who has expertise with chronic illness or medical trauma. That has been made a huge difference for me because I really felt like I had to carry a lot of this burden alone or I didn’t know how or when to speak up. And then, you know, don’t be afraid to offend medical providers. You know, like You know, your body best. And a lot of times these kind of more specialized fields or whatever it’s like, yeah, they’re a doctor. But maybe they only got one or two hours of a lecture on this particular thing, like 20 years ago. So you know, don’t be afraid to ask for another opinion or ask for documentation, especially if they’re refusing a test or imaging or anything like that. And then my favorite lately, whenever they kind of dismissed something is, yeah, can you explain your differential diagnosis, whenever they just missed something, and then they’re like, oh, shit, she knows medical words. And then if they use the big one, yeah, and then if things get really bad, I’ve done this a couple times, is filing formal complaints with Member Services, I swear, it’s like, like I said earlier, the squeaky wheel gets the grease sometimes. And that shouldn’t be the way that it is, obviously, it’s like, because again, I have the privilege of time understanding how to navigate these systems, feeling confident that I can go up against, you know, the man or whatever, like. So really just trying to own your space and making sure you do advocate for yourself, and knowing that there are multiple avenues to ensure you’re getting the level of care that you deserve and need. And then at the end of the day, it really just like giving yourself permission to feel whatever you need to feel, regardless of if people are around, you’re kind of on that toxic positivity train of Oh, you’re, you know, it’ll be fine, it’s all going to work out, it’s all for a reason. It’s like, there’s gonna be good days, and there’s gonna be hard days, there’s gonna be days where you’re so hopeful, and there’s gonna be days where you’re just dreading everything. So, you know, allowing yourself to feel that process it and then you can, you know, hopefully, move on with your day and not have it build these kinds of internal resentment.

Megan
Do you have any words of advice? for loved ones of someone who was just diagnosed?

Jenna
How much time do we have? No, seriously, though, um, yeah, I think like I was mentioning before, kind of around the harmful statements is like, focusing on listening to understand how they feel or like, learn about their experiences or their conditions. It’s like, you have Google literally, in your hands, you know, like, and don’t, don’t use that as if you now understand. But it’s like, you can do a little bit of homework, you know, like, you can try to understand maybe some of the things that might be happening in their body. Or, you know, don’t give advice, don’t make assumptions. Don’t like, try to compare whether it’s your experience, or like some, you know, second cousin once had this, and then they did this and they’re magically cured. It’s like, everyone is different. A lot of these things are so complex and nuanced. And then just really understanding that chronic illness can be so unpredictable and dynamic. So it’s like, yeah, you might see me out on a Saturday like looking healthy and happy and like crazy and like living my best life. And then what you don’t see is on Monday, me spending like eight hours in the ER, you know, so it’s like, or I might have to cancel plans last minute, and I’m not being flaky. It’s just things change on a dime. So it’s like just really leaning into like believing people showing up for them asking questions, letting them know that you support them, like, no matter what version of themselves, they might be that day.

Stephie
Love it. Thank you so much for coming on here. And for being super open and honest in a way that you haven’t before agenda. I know it is. I know that we are such scary people. Terrifying facing us. Joining us today,

Jenna
I definitely had anxiety dreams about this all last night swear. I was like,

Megan
Oh my God. Because either the least people you should Oh,

Jenna
no, not about you guys just about talking about it. Because like, I swear, like, again, whether it’s explicit or implicit, I feel like I’ve just been trained to like, not talk about pain or things that like don’t have a light at the end of the tunnel, you know?

Stephie
Well, I hope that I hope that this broke the ice. Yes, you can feel more comfortable about it. And Absolutely. Now if you’re just have people that are like, I don’t get it, you can just send them

Jenna
this. Yeah, here you go. There. That’s all you need. Yeah, of course for you. And and it’s I mean, it really is, it’s, like I said, finding the community is so helpful. And so it’s like, if this even helps one person, like, feel more ownership over their health, or like their relationships or workplace or whatever, like, then every single word here is has been worth it. Right? Like, it’s so cathartic for me to finally start talking about but at the end of the day, like we need to as a society, you know, Megan, you’re saying, like, how do you feel about where people are going? Generally, it’s like, we need we need more of this conversation. We can’t just be hiding it or trying to mask it in all positive thoughts all the time. It’s like, if if my positive thoughts could heal this, I would have been healed a long time ago. So

Stephie
tell me about it. Oh, my goodness. Well, to wrap up here, what is bringing you joy this week? Jenna?

Jenna
Yeah, it’s it’s a good week. Um, And you know, as you can tell, by all my answers, I tend to have a lot of thoughts. So a lot of things are bringing me joy this week. So my garden is in full bloom, I have a big vegetable garden. And I’ve been eating out of it every day. So that’s been delightful. And I’ve been kind of diving back into my creative side of my brain, which I’ve feel like I’ve had to silence in a lot of ways in the last few years professionally. And so I’ve been helping, you know, friends and family and actually my backyard to but design and build really beautiful outdoor spaces. And that is just such a release for me. And then we’re also going to Maui this week. I’m so excited. And we’re going to be celebrating one of my nephew’s first birthdays. He he was a micro preemie last year. So he was teeny teeny, teeny, and he’s turning one so we’re so excited to you know, go on vacation, just kind of relax, celebrate him. And then my other nephew’s birthday is two weeks later. So I’m like, Oh my God, give me all the little babies. And they’re these are both their first birthdays. And then I have some nieces who are older. But so yeah, two little babies two weeks apart. They’re the cutest cousins. So I’ve just been buying like way too many cute baby things and, you know, buying way too many bathing suits. So how many bathing suits is too many for a week in Maui?

Stephie
I mean, I would say that you probably need a new one every day.

Jenna
Perfect. Great. Okay, I definitely have like a two to one ratio right now. I’ve been into today’s so I’ve got an

Megan
option. I mean, maybe you were one of the morning. Got it. Yeah. And then you don’t want to wear a wet one and they eat. Exactly.

Stephie
I could give you like, crotch

Jenna
Yeah, no, no, no, no, no, no, no, no. Yeah. So keep it clean super day. Perfect Day. Okay, then I’m right on track.

Stephie
We’ll help you justify anything. We’re enablers. Yes.

Jenna
I mean, it does help that I went to college like in a beach town so I have a lot of bait like an obscene amount of bathing suits.

Stephie
me while I like make do with the same to for like five years. Like oh, I guess maybe something I don’t get by the water though. It’s fine. Stephie I know I know. I don’t camp I don’t do the water. What about like really?

Jenna
When you come out here can I get you on like a paddleboard or something come on. Like I think I’m like embrace like river life sorry.

Stephie
In like a body of water. Like I can’t see the bottom. Absolutely not. Okay, I’ll just build a pool. No bad swimmer. I’ll just stay by a pool. I’ll stay on the beach. I’ll watch you paddle. I’m watching the board all day. I’ll put my feet in the water and then I’ll go sit and then I’ll put my feet in the water. Yeah, I don’t get I don’t get in bodies of water where I can’t see.

Jenna
Okay, that’s fair. And like luckily I like you for a lot of other reasons. So it’s not like yeah, it’s not dependent on your level of water

Stephie
really bad swimmer so like the odds that I would drown while paddleboarding pretty darn high. Just keep me alive. It’s safer

Jenna
and really safe. I mean, like just no like I was a lifeguard for a very long time so like You’re like you are safe, but

Stephie
it’s fine I’ll keep my All right intact to

Jenna
each their own or whatever. me speaking about like peer pressure earlier now me like get in the water. Come on.

Stephie
Oh Meghan, what’s bringing you joy?

Megan
I got a new shirt recently. Oh, it’s via Tiktok Seymour so I was deep into I guess I still am a stranger things tick tock. And right about when the Roe v Wade stuff happened. A story popped up of a woman making a shirt. That it’s a it’s a Hellfire Club shirt. But in place of the dragon is a uterus with fallopian tubes or giving the finger

Jenna
so is that your daily uniform now? Oh

Megan
no, it’s long sleeve so it’s been too hot unfortunately. But I’m very excited about the shirt makes me happy every time I look at it.

Stephie
Is it really soft? It

Megan
looks like it would be his really soft it’s not super thick. It’s just that it’s long sleeves and I don’t want to like sweat too much but yeah, it is. It’s gonna be my like my fall outfit probably.

Jenna
I love that for you. I prove

Megan
Steffi, what is bringing you joy.

Stephie
I have really been into embroidery lately. And it’s my current hyperfocus and I so there’s a gal who her platform is badass cross stitch. And she does all sorts of really great just like activism work and she has a really awesome Patreon where she’s doing like a A teaching you like a new stitch every week during the year. And so at our Patreon is like really affordable, she’s got like different levels, but it’s basically so she set it up in sort of a pay what you can kind of model and and then everyone gets access to this like stitch along sort of situation. And so like when you join, you can go back to the beginning of the year and like learn all of like the basic stitches and then she teaches you like fun new ones, like new things I’ve never done and she gives you little patterns. And so I guess it’s just been really fun to like, do some of her patterns and like try new things and brush up on stuff that I’ve done before I embroidered. My jean jacket, and then I got like a I went to the like kids like consignment shop or whatever. And I got a little jean jacket for Ed to wear this fall and I embroidered some flowers on it. And so just having having a lot of fun with that. I also ordered some really lovely hand dyed variegated embroidery floss yesterday. So I’m very excited because that’ll be coming in the mail soon.

Jenna
That’s literally like a whole different language. I don’t know what you just said. You with the embroidery and me with a campaign. It’s like,

Stephie
oh, you can go campaign and I will sit and stitch things. I’ll stitch a tree. Little tree, and you can look at happy little trees.

Jenna
And I’ve seen some pictures of the embroidery and I am so impressed.

Stephie
Well, thank you i My mom was super, super, super talented in pretty much all fiber arts situations. So I definitely have just been like channeling her a lot with it lately. And like, she taught me some stuff when I was a kid. But I haven’t done it in a while. And I was really out of practice and obviously didn’t don’t have her around to teach me anymore. And so finding Shannon’s Patreon was has just been really great because like, the way she teaches reminds me a lot of like, how my mom taught me a lot of the stuff and so it’s just been, it’s just been nice to like just kind of find some super approachable ways to do it and fun ways to do it and just kind of connect back with my mom a little bit there. And I mean, I have all of her embroidery floss and so occasionally I’ll pull out a floss bobbin and it’ll have her the number on it which in her handwriting. Oh no, I just love that. That’s a special. Yeah, so anyway, that’s that. It’s just bringing me joy.

Megan
There was a lady crocheting at the coffee shop last week. Love it like I can bring my crafts to the coffee shop.

Jenna
changes everything.

Stephie
For me. I’ll never leave.

Jenna
Right yeah, like I live here now.

Stephie
Never. Never get any actual work done.

Jenna
Hey, that’s where I’m telling you my camping gear would come in handy. You can live anywhere. Okay.

Megan
I love you. You’re amazing. Oh man. Well, next week we are going to talk about food blogging after you know like three years of podcasting.

Stephie
Finally. Until then, you can leave us a review on Apple podcasts or find us wherever you listen. You could also find us on social media at IRS I podcast or send us an email at I’d rather stay in podcast@gmail.com We’d love to hear from you.

Megan
Bye

Transcribed by https://otter.ai