Sick, I Swear
Welcome to Sick I Swear, a podcast designed to lift the curtain on life with invisible illnesses and disabilities. Through candid conversations, humor, and honest insights, we explore what it’s like navigating a world that often can’t see our challenges. From daily struggles to surprising victories, we tackle topics ranging from managing symptoms and healthcare hurdles to relationships, mental health, and the art of keeping it together (or not). Whether you're living with a chronic illness, supporting someone who is, or just curious about the invisible battles millions face, you’re in the right place. Tune in for laughs, learning, and a community that gets it.
Sick, I Swear
Navigating EDS As Young American Women With Donna Irene
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Donna Irene joins me for Young Women Living With Ehlers-Danlos Syndrome (EDS) in America to share her story of living with a misunderstood, invisible disability. From years of medical gaslighting and dismissal by doctors to embracing mobility aids and confronting internalized ableism, Donna’s journey is raw, real, and full of insight. We talk about chronic illness, hypermobility, neurological symptoms, and how creativity keeps her connected to joy while navigating the political and social realities of being disabled in the United States.
FOLLOW DONNA: @wanderwithdonna
FOLLOW SIS: @sickiswearpodcast
Introduction to Donna's EDS Journey
Speaker 1Welcome back to another episode of sick . I swear I am your host , caitlin roadie , and all right . It is no secret that I have been slow at getting episodes out , slow at getting content rolling , and that just comes with trying to figure out balancing my energy and illnesses and also getting all this done . And I've found that it's been easy to have the conversations , but editing and getting them out have been the hard part . So , nonetheless , this episode was recorded a couple months ago and I am so excited to introduce you to this guest . Her name is Donna and she's an advocate , a creative , she does a lot of content online , very informational , she's very intelligent and she deals with EDS . I am so excited to have you here , donna . Thank you so much for being here and sharing your journey and experiences , and let's just get rolling into your journey , yeah .
Speaker 2So it's so funny I was actually just recording a TikTok with this whole story , so it's fresh in my brain . I have had severe chronic pain since I was eight years old . It actually started after a horseback riding accident . Yeah , I grew up riding horses and it was like my whole life and passion . But unfortunately , right after I started riding , I had a really bad fall where basically I was thrown from the horse and I fell from like 10 feet in the air , flat on my back and yeah , nothing was like obviously broken at that moment . So I didn't , like you know , go to the ER or anything . But I did go and get some MRIs later that week and of course , they all came back normal and the doctors were just like you're fine , there's nothing wrong with you .
Speaker 2But from that day forward I had really really severe low back pain growing up in school and throughout my childhood , to the point where in school I couldn't walk upstairs , I couldn't carry a backpack , I couldn't do PE , a lot of normal kid things and I didn't have any explanation as to why .
Speaker 2I basically was just told to go to chiropractors , go to PT , massage , all this stuff , and I did that for my whole life and it kind of got me through and basically spent my entire life in pain , looking for answers , never giving up , like I was just going to doctors all this time . And then you know thinking , okay , maybe the Western medicine doctors aren't helping me , maybe I should try more like holistic practitioners . That wasn't helping either , and it wasn't until around mid 2022 that my symptoms started to get really severe , where I had to stop working . That I finally was with a new physical therapist who brought up EDS to me for the first time and I started looking into EDS and the symptoms of it and it was , like you know , this light bulb moment of , oh my gosh , this is my entire life story . Like this is the answer I've been looking for . So I finally got diagnosed formally in August of 2022 by a geneticist in florida and , yeah , have just been learning so much since then ?
Speaker 1okay , so you were . Were you thrown off a horse ? Yes , so ever since then you went to like doctors . You tried to get seek treatment . Was there a lot of medical gaslighting then ?
Speaker 2oh my gosh .
Speaker 2Yes , I don't remember a lot of it , to be honest , because it's been so long um , and I would say that the chiropractors physical therapist type people , were the ones who weren't gaslighting me , but they also didn't know how to help me , and that's kind of been .
Speaker 2My experience is like with medical doctors , just the way that things are structured , with how they take in patients , the time that they have allotted to see patients to go over their case , it's such , it's such literal time .
Speaker 2You know , like my boyfriend , he's actually working at a doctor's office now and , um , he learned that they get , um , I think I forget what it was maybe five minutes or maybe it was 10 minutes , I don't , I don't remember , but like five to 10 minutes slotted per patient , which when a complex patient , like an EDS patient , comes through the door , like you're just not going to get through things and get to the bottom of things in five to 10 minutes , which makes things difficult , because at that point a lot of people would say , well , you should go to a functional doctor , because they have the time . They'll often , often , you know , spend hours on your case , like kind of taking inventory of everything . But I tried that too , and in my experience , if they weren't really knowledgeable in EDS , they just were not going to be able to help me in the end and plus , when you go through functional , it's not covered by insurance .
Speaker 1So you're whipping out thousands of dollars and it's just like not an option for everyone either . But yeah , the medical gaslighting is absolutely wild , especially when tests come back normal and they're just like no , you're crazy .
Speaker 2Yeah , I will never forget . I was in this like period where I was suspecting EDS after my physical therapist had brought it up and then I started actually learning a lot about it on TikTok and just I was convinced , you know , that this is what I had . But I hadn't gotten a diagnosis yet and I had went to see one I think he was a pain management specialist and I told him , hey , I suspect EDS . And he flat out said you don't have EDS . If you did , you would look like Abraham Lincoln .
Speaker 2And I was like , okay , this guy clearly does not have much knowledge on EDS , because there is a type of EDS where that
Medical Gaslighting and Diagnosis Challenges
Speaker 2can happen , where your skin is so excessively stretchy that it's like literally wrinkled looking , and that's the type of EDS that sometimes gets more of like the news attention because it's so visible and people like things that they can see , because they can understand it . Unfortunately , heds is pretty invisible from the outside . There is a lot that goes on the inside that you know . There's so much like evidence like that . There's so much evidence that there's something wrong in terms of the connective tissue integrity , but just at a glance on the outside there's no way you could see it .
Speaker 1So you have hypermobility . Do you have any of the stretchy skin , velvety skin ? Is your skin fragile ? Do you bruise easy ?
Speaker 2So it's really interesting . Is your skin fragile ? Do you bruise easy ? So it's really interesting . I have mild versions of all of that and it was enough to meet the criteria according to my doctor , but definitely not compared to a lot of people I know , even my partner . He is actually hypermobile but he doesn't have EDS or anything , but he has that really classic velvety skin that like can even catch when you rub over it . I don't have that . So I was like you literally have the EDS skin and I don't , and that's so weird . But , um , something that is so you know .
Speaker 2Interesting to me , which I've been really learning since my diagnosis , talking to so many people and like hearing so many different experiences , is the spectrum of manifestations , of symptoms can vary so much within HEDS and the thing is there's no officially publicized known gene . You know they've been studying it for a few years , but the belief is that there's probably a bunch of genes that can contribute to the development of HEDS and there was actually some research that was posted , I think last year , out of the Norris lab in South Carolina , which is the main EDS genetics research lab in the US , and basically they found that HEDS often falls into three subtypes and these three subtypes . One of them has more of the skin manifestations . One of them has , I forget , more of the maybe vascular , I don't remember exactly , but I just remember I fell under type three , which had less of the skin kind of you know , more common things you think of with HEDS and more of the neurological manifestations , which is all the things that I've been dealing with , unfortunately .
Speaker 2So I was diagnosed with tethered cord syndrome last year , ended up having surgery for that . I've been diagnosed with cervical instability , which is why I often have to wear a neck brace when I'm sitting for long periods because I have a really hard time just holding my head up , and I have intracranial hypertension . So all of these like really really horrible and challenging neurological diagnoses . But I don't have the skin stuff that much . And even with the joints and the Baten scale , I was only a five out of nine , which is like just barely meeting the criteria , whereas I've met a lot of people who are a nine out of nine and it's like you know , there's just such a spectrum .
Speaker 1So people that don't know the , the Baten test is how you get diagnosed . If there's criteria on there , you go in . You check off the boxes as to what you experience , what you don't . So yeah , there's nine questions on it .
Speaker 2So to get formally diagnosed with HEDS . It's a one-page criteria which is broken up into three parts . Part one is that Baton scale , which is basically a hypermobility test , which is pretty frustrating because when you actually look at that hypermobility test it's missing so many common joints that people with HEDS and EDS in general often have issues with . And then there's part two and three , which have more like clinical criteria , like , for example , the things that I had , um , and they discovered , you know is how I met . The criteria were um , like , uh , narrow and high palate , crowded teeth , the um , I can never pronounce it the papules on your heels , these like really random things , atrophic scarring that you never would think about until , like , you go through this list and then start checking things off and you're like , oh , I guess I do have that .
Speaker 1Do you have a lot of lipomas throughout your body , like just curious , I don't know . Okay , cause I I've met a couple of people and I've talked to a couple of people who do have EDS , not sure what type , but they have a lot of lipomas like throughout their body and I have so many throughout my back . I'm like that it checks out . Then Cervical instability , let's talk about that . So I , the physical therapist in Chicago , was like have you ever heard of cervical instability ? And she like went through as like what it was along with tether cord , which we'll talk about that too , because I want more information from you on that . Um , she's like , go get an mri of it , go get tested . I'll give you all the information to bring back to your pain management doctor and we'll just get the testing done because I suspect it .
Speaker 1I went to my pain management doctor , was like hey , I actually had two . I to my pain management doctor and was like hey , I actually had two , I had my functional medicine doctor and the physical therapist be like check out for cervical instability . You kind of like check all the boxes for it . Went to my pain management doctor and he's like , oh no , that's like absolutely , you're in the hospital . Now you are absolutely like that is critical . I'm like what's okay ? So I can't . I can't get the testing . He goes no . So that's just like a classic case of like being dismissed by a doctor and like being kind of gaslit as to nope , not a condition that could possibly exist with you . How did your doctor handle
Cervical Instability and Jugular Compression
Speaker 1that ? How did you get diagnosed with the cervical instability ?
Speaker 2so I was diagnosed in 2022 via a digital motion x-ray , which is one of the gold standards for diagnosis , because basically it's a live x-ray where you can see the joints and the vertebrae moving in real time and take measurements and all of that . However , since then , I have been trying to see whether or not I am a candidate for cranioservical fusion , because I was diagnosed with cranioservical instability and atlantoaxial instability , which is from C0 to C2 . And then also with instability in the rest of my cervical spine from like C3 to C7 . So I have instability throughout my entire neck um , which makes things really difficult , especially because it's not something that is talked about much in the EDS community , like you're always hearing about CCI , that you know first junction , which is the most prone to instability , because it just takes a lot of like the brunt , of like the force , you know , of holding your head up . But I ended up flying to Washington DC last October to see one of the top craniosurgical fusion specialists for EDS patients . His name is Dr Henderson and he looked at my upright MRI . And he looked at my upright MRI , which was two years old at that point , and said that I didn't meet the criteria for CCI or AAI and that I wasn't a candidate for surgery , and that was really shocking to me . Not that I wanted him to say you have this horrible condition that requires a major surgery , but I had been told that I did have it . So I think that's . Another huge issue is there is a lot of difference in opinions . There's different ways to diagnose it which can potentially change , like the outcome of the diagnosis . So that's something that I'm looking to get a third opinion for . Now I'm actually waiting to get in with another neurosurgeon in New York who also evaluates for CCI and AAI to see , you know , do I really have this ?
Speaker 2Because the main condition that I am battling right now is something called jugular vein compression and intracranial hypertension , which is basically a vascular condition . Vascular compressions are very , very common in EDS throughout the whole body . I have it in my neck at that C1 level . My jugular vein is being compressed by my C1 vertebrae and by other structures in that area , which is causing a buildup of head pressure and severe , severe pain and a lot of other symptoms like brain fog , blurred vision , tinnitus , pulsatile tinnitus , issues with my cognition .
Speaker 2What is still like kind of a mystery in this EDS community and CCI community is like does CCI cause that ? Because the thought is that the C1 vertebrae is misaligned and is what's pressing on the vein , but there isn't a clear answer yet if CCI is the root cause of things like jugular vein compression , which requires a totally different surgery . So there's a lot of different opinions on what should you treat first . Should you get a fusion first to fix your neck instability ? Should you get a jugular decompression surgery , which is the path that I've chosen to go because it's less invasive , but it's just it's hard Okay .
Speaker 1So with the jugular compression , how did that show up on your scans ?
Speaker 2So I had to get really specialized testing .
Speaker 2For that . I traveled to a doctor in North Carolina named Dr Kyle Fargin and he basically did what's called an invasive venogram and angiogram , where they push contrast through your veins and your arteries and they look at it on like this fancy x-ray machine , basically in real time , and they're able to measure in real time the pressure in the veins and also if there's any stenosis , which is like narrowing of the veins . So , and at that same time I also got a lumbar puncture which measures your cerebral spinal fluid pressure , your CSF pressure , and basically he found that I had high pressure and I had compressed compression of my jugular veins on both sides at different places of different levels . And it depends on like at different places of different levels , and it depends on like if your head straight , if your head is rotated . So he looks at all of that , he measures it in different positions . So yeah , if anyone is suspecting jugular compression , definitely I recommend getting this testing . Unfortunately , you're probably going to have to go fly somewhere out of state to get it done , but it is worth it .
Speaker 1You know , I feel like that's just kind of become common with people like us . We just there's not the resources within our like little bubble . We have to go out throughout the States , and it is what it is in order to to figure it out . You're going to be a great resource for me , though I need you to drop all these plugs . Okay , so your treatment as far as the cervical instability neck brace what else you got ?
Speaker 2For me , the thing that triggers my symptoms is , first of all , anything that worsens my jugular compression and head pressure issues , which is often cognitive activities and things that send blood to my brain , because basically the blood is not able to exit my brain fast enough , which is why I get all these horrible symptoms . So anytime I have to like really think a lot , I can tell like my brain is working really hard and like literally my brain is getting inflamed and just filled with like pressure hard and like literally my brain is getting inflamed and just filled with like pressure . So that's kind of hard to avoid , you know , I am , you know , unable to work right now . So that's one big thing is like I just can't really do anything that requires a lot of cognitive function . And then for me it's like anything that I have to hold my own head up , so like sitting upright , like using my neck muscles you know those like cervical muscles triggers me Even any sort of neck exercise at this point .
Speaker 2I've spent probably three years now trying to do different physical therapy and everything just makes me worse . But I'm actually scheduled for a jugular decompression surgery this summer with a doctor in Colorado named Dr Hepworth , and my hope and what he thinks and I'm kind of like hoping he's right about this is that the muscles in my neck and the tissues are not getting proper blood flow and nutrients . So it's no surprise that they're like spasming all the time and freaking out and they're not able to work properly . So if I can decompress the jugular vein and allow the blood to flow properly , that might help my neck instability . Unfortunately , there's like no research on this at all , so it's completely experimental and I'm just going off of like logic and other doctors opinions and also other patient experiences and also , at the end of the day , like my biggest fear is getting something like a neck fusion and feeling worse , because that's a really really permanent thing that I don't really want to mess around with that's so I mean it's not funny , but it's so true that it's there's no research .
Speaker 1There's just not enough research , like we're just like bobbleheads out here . Yeah , literally . So when getting diagnosed and going through all of this ?
Speaker 2Yeah , so when getting diagnosed and going through all of this , how do you deal emotionally ?
Coping Emotionally with Chronic Illness
Speaker 2Well , I would say befriending other people with EDS has helped a lot . I have a few friends that I made through support groups that I text literally every day . You know , when we get a chance , we FaceTime each other just to like understand each other , because it's so hard to even like catch up with old friends or FaceTime with friends when , like , I'm in a neck brace , I'm like having to be horizontal and it's just like there's just like kind of this awkward tension of like they know something's really wrong but they don't want to bring it up because they don't want to make me feel worse . I want to talk about it because it's like this is my life and with other people that are going through the same thing , it's like you don't have to feel weird about it , Cause they literally know exactly what you're feeling . They're feeling it right then and there too . So that's helped me a lot .
Speaker 2Um , and I would honestly say , social media and sharing my story . Um , especially on Tik TOK . Um , I share a bit on Instagram as well , but I'm more I don't want to say vulnerable , but like I just share more videos on TikTok of like my real life experience , day-to-day story , and I've just connected with so many people through there who are feeling the same exact way , so that really helps .
Speaker 1It is a struggle and the power of TikTok , oh my God , I can't . Even if that thing gets banned again , I don't know what I'm gonna do about it . Going back a little bit to like when you're catching up with old friends , they don't have conditions that you have . Do you go out and like your neck brace or is that kind of like something that you just do at home because of like the questioning ?
Speaker 2I really avoid it at all costs . I hate wearing it out . I feel just so awkward having that attention drawn on me , but it's really really hard because wearing it out would be the best thing for me and I would feel better if I did . That's something that I'm still trying to work through . That's something that , like , I'm still trying to work through with CCI and potential CCI and trying to figure things out with the neck brace .
Speaker 2The opinions I've gotten from doctors even EDS , you know specialists have all been to avoid wearing the neck brace as much as you can to not weaken your neck , wearing the neck brace as much as you can to not weaken your neck .
Speaker 2And I don't think that even some of the EDS specialists understand how severe our symptoms are , because every person I know that has a neck brace and has to wear it .
Speaker 2Often some people have to wear it all day , like they cannot not wear it or else they could have severe symptoms like blackouts or seizures or , you know , really emergency situations . It's not something that I am like wanting to wear or like choosing , like , oh , I'm just going to wear this because I feel lazy and I don't want to work out my neck muscles , like it's literally not that at all . Like , I wish I didn't have to wear it , but I feel better when I do . And that's the really hard thing is , when I don't wear it I get really severe symptoms and that , to me , is very telling . But I still don't have a really accurate answer on whether or not , like , I actually meet the criteria for a fusion , which puts me in this kind of like weird limbo where I clearly have instability , but maybe it's not bad enough for a fusion . But then what do you do with those patients if they're also failing PT and injections and all the other treatments that are available ? It's just so tricky .
Speaker 1There's no answer . There's no answers , Kind of segwaying into like advocacy . Then how did you learn to really advocate for yourself ?
Speaker 2Well , I think probably the first step which , to be honest , I'm still working through and it's been a journey is just recognizing my own internalized ableism . And that has been quite the journey because actually , both of my parents were disabled growing up . My dad is blind and my mom she passed away a few years ago but she had a mental illness and my whole life I've always been surrounded by disability and saw them as disabled , but never saw myself as disabled ever . Like I never would have thought like , oh , I have a disability until 2022 , when I got diagnosed and then I got to the point where I couldn't physically work anymore and even then I still was like , oh , like the word disability , like I don't know if I want to claim that , you know . And then there's this whole idea of like manifestation , like I don't want to manifest that .
Speaker 2And then , yeah , I got to the point where I had to check my internalized ableism and understands , like , why do I dislike this word disability so much ? Like , why is it that I see this as such a negative thing that I don't want to associate myself with ? Like , what does that say about my beliefs about disability ? So that's been huge and I think , following a lot of disabled creators has helped me a lot with that , and still it's hard . It's hard sometimes , Like I I don't like the feeling of it , of saying it out loud , especially when I know what a lot of people will think , and it's like you deal with that judgment of like people are going to think , oh , she's not disabled , you know , because I look fine , or I'm 31 and like I look young and healthy , whatever .
Speaker 2Because I look fine , or I'm 31 and like I look young and healthy , whatever . Unless I'm in a wheelchair or using my cane or wearing my neck brace . It's like , oh so she is disabled because she's using these mobility aids , but like I'm still disabled when I take the neck brace off .
Speaker 1You've taken like every single word out of my brain when it comes to this . I think this is like checking myself real hard too , because the internalized ableism within myself is unhinged . I will put it that way Like you just want to feel normal , you want to be normal , you want to do the things you used to be able to do , and it's really hard , like the acceptance of it and it's it's a process , it's not something that's going to happen overnight .
Speaker 2So we know You're making me like realize that I think one of the things that holds me back is really the root of the issue is accessibility , because if I could live my disabled life and have the ability to like do a lot of things that I used to do , I feel like I would feel a lot better . But I guess because accessibility is still like really far off from like what it needs to be using mobility aids . Being disabled often means you are more limited in the world , and that is a really sad thing , because no one deserves to be limited in doing the things that they want to do with their life . But unfortunately that's just been my reality . Like I can't physically do most of the things that I want to do anymore , and that's really hard .
Speaker 1It's . It's a mind fuck , to say the least .
Speaker 2I was gonna say I feel like with the mobility aids , especially with EDS , because you know , there's so many disabilities where it's like you clearly don't have a choice to use a wheelchair or whatever . You know , if you're paralyzed , like you , you have no option . But with EDS , there's like this kind of journey of like okay , when do I need a mobility aid ? That's it , yeah , and there's , there's thankfully , there's a lot of creators that talk about this exact topic of being an ambulatory wheelchair user , where sometimes you need it , sometimes you don't . That's kind of where I am and most of the time I don't , but there's times where I do and then it's . It is a journey of like okay , well , when do I get my own wheelchair ? Do I need a custom wheelchair ?
Speaker 2But you know , I think the general thing to ask yourself is is does using the wheelchair or whatever mobility aid it is , does it improve your quality of life ? Does it allow you to get out into the world more ? Can you go further , Can you do more with it ? And the answer for me is totally yes . I could not go to Disney or to a zoo , even , or even the airport , without a wheelchair . I just can't physically walk that far or stand for that long . So if I choose not to use it , it's like I'm missing out . But if I choose to use it now , all of a sudden I'm able to be out in the world , and that's really important .
Speaker 1Okay . So , for instance , like going to the mall or going to an amusement park , I could walk it . However , it's going to put me in severe pain . It's going to flare the hell out of me the next day and sometimes , like , unfortunately , it kind of depends who I'm with . I'll have my mom push me around in a wheelchair or whatever . I don't know why it's so hard for me when I know my friends and friend groups are so supportive for me to like not want to do that when going out with friends . And I don't know if that's just like because I want to just feel normal again , like going back to the normalcy . But then it's like , okay , that's ableism inside my head and how do I get out of that ?
Speaker 2it's like it's so hard yeah , I'm , I'm completely with you because I still struggle with that . There's times where I don't want to use the wheelchair , even though it would help me , because I'm with friends and it's like I just want to pretend that you know , I'm still the normal girl . I mean , the thing is like I was never not disabled , like I've had EDS life . It's just I'm learning now to accept it .
Speaker 1And I feel like , well , eds , I mean , it is progressive too , like as you get older and as your body changes too . I feel like it does . In my instance , it has gotten worse . It varies person to person . Everyone's journey is different , but for me , I feel like it's definitely going to be going downhill as I turn the ages . So it's like balancing that too and really realizing my needs these days , because I had no idea when I was younger .
Speaker 2I don't know . Yeah Well , I'm supporting you in exploring your possible mobility aid journey and hopefully embracing that and it can help you .
Speaker 1I think it's kind of an obvious answer , but I wanna hear it from you what made you want to share your journey online ?
Speaker 2um , I would say it's actually less to do with EDS and more to do with just my like really rich inner world .
Speaker 2So another thing that has been absolutely life-changing for me , which came around the same time as my EDS diagnosis , is a few months after that .
Speaker 2I was also diagnosed with autism and ADHD and my entire life I have been neurodivergent and didn't know . But it's been this thing where , like I'm kind of like working with my brain and my brain wiring and like often battling my brain and how it works and what it likes , but I often feel like I have just so many emotions , I have so much to say . I feel things so , so deeply , and for me , creativity and self-expression and art is the way that I can really express those things that I'm feeling . So I've been sharing my story creatively online since I was a kid I mean , like even starting with MySpace , I was doing that and then I spent years in high school on Flickr , which is this like old photography website , and was like really expressing myself creatively More talking about like mental health stuff back then , because I didn't have a diagnosis of EDS back then . And then , yeah , it's just been kind of this evolution of me discovering new things about myself and just sharing them , like I always have .
Speaker 1I think having a creative outlet is so powerful , especially being disabled , having chronic illness .
Speaker 2I think it really does help the mind and we know that mental health is so important when it comes to our physical health , and balancing it is tricky , it's a challenge , but yeah , well , a podcast is something that I've always thought about doing too , um , because I feel like just having this place to like have honest conversations it's so important , like it is creative in a sense you know , oh , totally . So yeah , I love that you're doing this , thank you .
Speaker 1That's exciting That'd be so fun and again having the creative conversations and it really does make me selfishly feel less alone too , like it helps me throughout my journey . I'm still learning about my diagnoses , I'm still getting diagnosed , I'm still figuring out treatments and talking to other people like you who have gone through all this stuff . Learning from you and everyone else has been really powerful .
Speaker 2The more you know , the more you can share that knowledge with others . So you really have to get the snowball rolling to all help each other , cause there's still so many people out there who are not diagnosed yet , who are adults and like they need to get diagnosed to to help themselves sooner .
Speaker 1Okay so Donna , photographer , dj , traveler , chronic ill , that chronically ill body , I want to hear about your DJing .
Speaker 2So I fell
DJing and Music as Creative Outlet
Speaker 2in love with music festivals , raves , electronic music around 2020 , 2021 , around 2020 , 2021 , more so , 2021 , after I was going through a divorce , and it was like my way to just get out and do things that made me happy , where no one was going to judge me and like something that I had always wanted to do but kind of felt this judgment around and I just went for it and , yeah , I really really love that community and DJing is something that I've just had on my radar for a long time and it's just been really , you know , kind of intimidating , like learning a new hobby . I don't like being a beginner at things , but yeah , it's like I don't like to be bad at things . I want to be good right away , like overnight . Yeah , it's like I don't like to be bad at things , I want to be good right away , like overnight . Perfectionism , yeah , um , but I just decided , you know , I want to go for it . I'm just starting out .
Speaker 2I just got my first DJ controller for Christmas , so it's been like three months , um , but yeah , it's been fun . It's been a lot harder than I expected . Honestly , like you see , people DJ and they're like what they even doing ? Like it looks like they're doing nothing . No , they're doing a lot . Like it takes a lot of like multitasking and focus . Like you can't just like go off . Like when you're ready to transition a song , it's like you gotta be paying attention or else you're gonna mess it up . It's like that's coming through the speakers .
Speaker 1So I'm so excited to follow along on this journey . You've posted like a few , like little clips . I'm just like it's like so sick . I love it and I think you're going to be really great at it .
Speaker 2Thank you . Yeah , I'm hoping that this can be something that I can do while having a chronic illness and a disability , because you know , my first DJ set that I recorded this past week , I was just sitting down in my kitchen . I was able to sit down if I needed to . I could stand up if I needed to move around . So it is pretty versatile and accommodating , which is great .
Speaker 1And again , it's another creative outlet and it's something that , especially being a music lover , I think fuels a lot more passion as well .
Speaker 2Yeah , and for me music , especially electronic music and the BPM of it , is super , super regulating for me for my neurodivergence . But also there is research that that type of music can also help with chronic pain and just the way that affects , like your brain chemicals . You know boosting all the good stuff like can also potentially help with chronic pain and just the way that affects like your brain chemicals . You know boosting all the good stuff like can also potentially help alleviate chronic pain .
Speaker 1So what if you're onto something ? What if you start making like chronic pain music and then all of a sudden , all of us are like symptom reduced ?
Speaker 2I've been thinking about that . It's it's something I'm considering .
Speaker 1Oh , I love that . Yeah , I'm so into that . That okay . So you go to music festivals . How do you manage going to like live music while feeling like garbage ?
Speaker 2um , it's getting harder and harder , unfortunately . When I first started going to festivals was at the end of 2020 , I had a lot more capability , um , and it was still hard back then , like I was suffering , I , I was in pain , kind of like where you're at now , or it's like I could go , I could push myself , but I'm going to be in horrible pain but I could do it . Now I'm at the point where I physically can't stand . I can't do the walking of a festival because the grounds are really big , you know , it's really physically taxing , plus it's like hot , you know , and it's a whole day thing .
Speaker 2So one thing is , most major festivals have tons of access . They have accessibility departments . They have you can get a wristband if you're disabled to be able to access their accessible viewing areas , accessible bathrooms . They allow mobility aids . So I'm actually going to two festivals this year and my hope is to get my first mobility scooter to bring . Um , I haven't had that yet for a festival and I've just been kind of like suffering using a cane . I have like a little cane chair which allows me to sit when I need to sit , but like I still have to do all the walking . So , yeah , I think that's going to be a big game changer for me .
Speaker 1Yeah , using your resources , seeing what works for you , seeing what doesn't , and I think I need to take that advice for myself .
Speaker 1Yeah , mobility scooter Maybe you need one , maybe Cause I have the cane with the seat too and I'm a huge music lover . I love going to live shows and stuff , and I've taken it sometimes and sometimes I've just left it at home because one it's the society judgment I just can't with . Like the looks and like the why do you need that ? And like you look fine and stuff like that . Um , but then again that's just like that's going against myself at that point .
Speaker 1Yeah , I know , and I think a lot of people can relate to that , especially in our position . Um , okay , well , in the name of advocacy and having a place to share experiences , talk about chronic illness . I think it's wrong of me not to talk about the political aspect of what's going on in the world , especially when it comes to healthcare and the impact that it can have for chronically ill people . We're not political majors . Put it out there like that . We're just girls , but we have no choice but to be involved in politics at this point , unfortunately . What are some of your biggest takeaways right now with the new administration policies ?
Disability Politics and Healthcare Concerns
Speaker 2It's a very scary time to be disabled . In the US , there has been a lot of talk of potential dismantling of the Social security administration , which is which disability falls under . Um . I am still in the middle of trying to get a final determination for my disability case which I've been working through for two years .
Speaker 2It's been such a mentally exhausting process and it's just like you . I know I need this , I know I deserve this and I'm fighting for it , and I've been fighting for two years and just the thought that all of that could potentially be taken away because of this administration is quite scary , because I quite literally depend on this . You know getting approved because I don't have any other income on this . You know getting approved because I don't have any other income . But not only that just the way that disabled people are going to be treated and viewed and it's just empowering hateful , ignorant people to be hateful towards disabled people and potentially even harm them . There has been a list of words put out there that the federal government is now prohibited from using . Any federal worker is encouraged to not use any of these words , and on that list is disability , disabilities , accessible , woman , female . So it's like woman , female . So it's like I'm literally targeted here , you know , as trying to be made even more invisible than I already am .
Speaker 1It's a good time to be an American baby .
Speaker 2Yeah , I personally , I have been making a plan for myself to leave the US . I used to live abroad . I used to live in Mexico , mexico , and I'm looking to move abroad again . Um , because , regardless of , like , the current political climate , like that's just like the cherry on top , but it's already been really hard for me to live here because of the quality of life that we have in the U ? S , I feel is just so poor and it's like , you know , yes , we're a first world country , but , like , do we have , like , walkable communities ? Do we have good access to green spaces ? Do we have affordable healthcare ? Do we have good food quality , good water quality , air quality ? No , we don't have any of those things . And those are all vitally important for someone like me that it really impacts me and how I feel on a day-to-day basis having these things .
Speaker 1Yeah , I mean , this country is a business . It's profit over people , especially when it comes to marginalized communities which we fall under . It's a very terrifying space to be in and I'm just angry all the time and I'm trying to regulate that and I'm trying not to like make it be my entire personality right now , but it is so important to be talking about this stuff and having conversations , especially with the people with the blinders on that , just like don't want to like , don't want to hear the noise because it's like terrifying , honestly .
Speaker 2Yeah , they're unfortunately in a position of privilege where they don't have to care . And that's what I think people don't understand is it's not like I want to be spending so much of my free time talking about these horrible things . It's like I would much rather be doing something else . But I don't have a choice because A my sense of justice says otherwise , like I can't just turn a blind eye . But also , this affects the disability community so much , and women in general , and every minority , every vulnerable group , which disabled people are some of the most vulnerable people in the class . It's like we have to speak up .
Speaker 1We don't want to . We don't want to have to be doing this , but we have to be . Oh so where is your line of like ? Staying informed but then not getting too overwhelmed with all the fuckery .
Speaker 2Oh , that line is definitely a little blurred right now um , I think it has more to do with my boundaries , with my phone and social media in general . Um , which I , like most people our age , really struggle with because , on one hand , like I'm a TikTok scroller , like I love a good TikTok scroll and like it genuinely , like makes me happy and laugh , and like I see so many amazing things on there and I learn so much I mean , like so many of my diagnoses that I have now I actually found through TikTok , which is insane , but , yeah , it's definitely a thing where , like , too much of anything is a bad thing , so I have to put my phone in another room . A lot of times that's really the only thing that works for me is like , if I put my phone in another room it's not right next to me , then I don't grab it Out of sight , out of mind . Yeah , that works for me , but if it's right next to me , I will grab it .
Speaker 1Yeah , I mean , that's a great tool . I'm probably going to have to use that tool too , because it's so easy to just get so consumed into what's going on . And that's not a bad thing , right , it's not a bad thing to be informed , but it's at what point are you just being too overwhelmed and overstimulated with how much is actually going on ? So , yeah , deep breaths . That's what we can do . We can only do our best , and I think staying informed with local government is going to be the biggest tool , and I've never done that in my life , but now I feel like it's very important and it's crucial to do so . I think , coming with these midterm elections and staying informed and doing what you can locally is what you can do .
Speaker 2Yeah , well , we're both in Tennessee , which is a red state , Kudos . Yeah , how has that been for you ? How has that been for you ? Because for me I mean I'm in Chattanooga and it's pretty liberal here , but definitely I feel like it's not liberal enough for people to be like really protesting . There's been like really really small protests , but not what you've been seeing in your bigger cities , like you know Chicago , dc , denver , seattle , like these places where there's , you know , a lot of more educated people .
Speaker 1It's probably been about the same . I mean , it's definitely , you know , we're a blue dot in a red state , in Nashville here , and there has been some protests not huge big ones , definitely surrounded by a lot of conservative .
Speaker 2No , it's been tough . It's a really hard time . My dad is extremely conservative and that has been super hard for me . I have a couple friends who are conservative who I literally can't even talk to them about it . And it's even harder now being so vocal on social media about how this impacts me very greatly and not hearing anything from them , just hearing crickets .
Speaker 1You know it's like this would be the time for you to speak up and like support me , but well , right , and that if they have different beliefs in you when it comes to that , that can't make you feel very supportive as a human . Oh , and that's it's . It's a hard climate for everyone , especially when you have conservative close people around and luckily I don't have that many and I don't know if I've just like kind of X'd out those people at this point , because that's what I have to do for my healing right now in order to get through . But I think I've said it a couple of times , it's tricky out there , yeah .
Speaker 2Well , I am really proud of you for being someone who is willing to be informed . Educate yourself , because all of these things that we've talked about with internalized ableism , learning to accept our own disability , learning to accept mobility aids as not being something to be embarrassed about All of that has to do with politics and access things , so like it all is all intertwined .
Speaker 1Thank you . You're gonna make me freaking cry , oh my gosh , and I again , I'm so proud of you for putting your journey out there , for your experiences being informed . You're so knowledgeable and I think that that's really important , and your voice is going to go a long way and we just need more of it .
Speaker 2Thank you so much .
Speaker 1Of course , thank you for being here taking your time sitting upright . Yeah , I'm going to have to be flat after this . Yeah , same girl . We we're gonna go rot for a second . Um , but where can we find you ? Where can ? What's your social media ?
Speaker 2so I am at wander with Donna on all the socials Instagram , tiktok and now YouTube . Yeah , I would say I share the most on TikTok about chronic illness and EDS , so if you're interested in that , go to TikTok . But if you want to see more of my like DJ , journey , travel stuff maybe yeah , we do .
Speaker 2So I'm so excited for that and thank you for being here and talking . I could probably I could talk to you for hours , days , weeks . We're only two hours away , so we got to meet up . What the hell ? Yeah , we do . Yeah , we should meet up , okay we'll figure out a time .
Speaker 1I've been wanting to go down that way anyway , so
Final Thoughts and Contact Information
Speaker 1we'll chat and figure it out . But , thank you , that'll do it for this week's episode . Follow along on Sick I Swear podcast because your girl got hacked and Sick I Swear pod is no longer a thing . So if you want to do me a favor and go report that account and get that shit taken down , that would be so great . Um , but here we are . Sick I swear podcast , new tiktok . Don't forget to rate and subscribe . Get this out to as many ears as we can and continue making invisible illness visible , one episode at a time . Baby , see you next time .