Listen to episode above 👆🏼

Or you can click here to find and subscribe to Wellbeing Interrupted on your favourite App!

Listen on your favourite App

 

 

In this episode of Wellbeing Interrupted, I sit down with Ronni Morgan and let them share their story of living with Hypermobile Ehlers-Danlos Syndrome (hEDS). In their own words, Ronni is “Queer, Disabled, has a lot of random shit to say,” and that’s exactly the energy they bring to our conversation. Their journey sheds light on the challenges of navigating life with an invisible disability, the power of self-advocacy, and the determination to create a fulfilling career despite chronic pain. Ronni’s insights will resonate with anyone seeking to embrace life with their illness. 

 

Navigating the Complex Road to an hEDS Diagnosis 

 

Ronni’s journey to an hEDS diagnosis was far from straightforward. Early symptoms, like severe knee pain as a child and "mushy" hips in their mid-20s, were dismissed or misdiagnosed. It wasn’t until years of persistent symptoms, including debilitating pain and mobility challenges, that a geneticist finally confirmed the diagnosis of hEDS—a connective tissue disorder caused by faulty collagen production. 

Ronni’s story highlights the importance of persistence in the face of medical uncertainty and the critical need for healthcare systems to better address invisible conditions. 

 

Living with Chronic Pain and Craniocervical Instability

 

For Ronni, hEDS presents daily challenges, including chronic pain and craniocervical instability, which makes it physically taxing to hold up their head. Despite these obstacles, Ronni refuses to let pain define their life. Through therapies, including nerve pain management, and a deep commitment to resilience, they have reduced the severity of their pain and regained some stability. 

 

Their experience underscores the value of seeking tailored treatment plans and prioritising mental health to navigate the emotional toll of living with a chronic condition. 

 

Advocating for Yourself in a Flawed Medical System 

 

 

Ronni’s determination to advocate for their health has been a central theme in their journey. From requesting specific tests, like an upright MRI, to addressing dismissive medical professionals, they demonstrate the power of self-advocacy. Ronni also educates others about dynamic disabilities—conditions that require varying support and mobility aids depending on the day. 

 

Their story serves as a reminder to patients and healthcare providers alike that listening, persistence, and education are key to improving outcomes for those with complex health needs. 

 

Redefining Career Goals to Honour Health and Passion 

 

The challenges of hEDS required Ronni to leave their decade-long career as a hairstylist, but it also opened new doors. Today, Ronni thrives as a virtual assistant specialising in tech and creative services. This career shift allows them to accommodate their health needs while continuing to make a meaningful impact. 

 

Ronni’s story is a testament to the possibilities of redefining career goals to create a life that aligns with both passion and physical wellbeing. 

 

Raising Awareness About Invisible Disabilities 

 

Through their blog, Ronni’s Random Musings, and their Instagram, Ronni shares candid reflections on life with hEDS, aiming to foster greater understanding and compassion. Their writing and advocacy work challenge misconceptions about invisible illnesses, encouraging society to embrace kindness and inclusivity. 

 

By sharing their story, Ronni inspires others to speak out about their experiences and advocate for a world that supports everyone’s unique needs. 

 

Final Thoughts 

 

Ronni Morgan’s story highlights the challenges and determination it takes to navigate life with a chronic illness. Their experiences show the power of advocating for yourself, adapting to change, and finding ways to live fully, even with hEDS. It’s a reminder to all of us about the value of kindness and understanding toward others, especially those with invisible disabilities. 

 

Show Resources 

• Learn more about Ronni and their work at RonniMorgan.com 
• Explore Ronni’s creative shop at ClubBionicArt.com. 
• Visit Hurdle2Hope.com/stories  for more inspiring stories of resilience and healing. 
• Access the Transform Health Session here hurdle2hope.com/transform 

 

 

Transcript Episode 47 Hurdle2Hope® Stories: Meet Ronni Morgan Living with  

 

Episode 47: Hurdle2Hope® Stories: Meet Ronni Morgan Living with hEDS

 

[00:00:00] Teisha Rose: Hey there, Teisha here and welcome to episode 47 of Wellbeing Interrupted. Hopefully you've had a good week. I've, I've had a good week recovering from the MindBodySpirit Festival. It took a bit out of me, I think. Nervous energy, but also the excitement of it all. Also, um, had a bit of a sad weekend, actually.

[00:00:24] I had, A podcast interview organized to do this morning, I sent through the questions and unfortunately a relative of the guest who I was really excited about interviewing said that I'm so sorry but she won't be able to do the interview because unexpectedly she's passed away and I'm so sorry Really, I'd never met this lady, and I won't mention any names because I'm not sure all the details or when exactly it happened, but it must have been over the last week or so.

[00:00:59] Um, and I looked on socials and it hasn't been announced, but it just took my, took my breath away. But then I thought, you know, this lady was going to be a guest on the Hurdle2Hope series because she had an incredible story of Embracing her life with her disability. And I thought, what a lesson it is for all of us, because we don't know what's around the corner.

[00:01:28] Living with stage 4 breast cancer, I do think about that a lot more, but I think for me and for others living with a health condition, if we embrace our life, If that hopefully inspires others to do the same, then when something as devastating as this happens to this woman and her family and friends, then at least we have lived life.

[00:01:58] And tried to live it fully and that's certainly what she did. So I'll definitely share more details if I see it on social media. But yeah, I just thought I'd be transparent as to I'm feeling just a little bit, you know, taken back by that. But also, as I said, is a message for us all to let's Embrace life.

[00:02:22] So I'm doing this intro from, for an interview I did a couple of weeks ago for the amazing Ronni Morgan. You'll get to know Ronni a whole lot more during our interview, but for now I'll quickly read out. The About section on Ronni's website. And this is what I read and thought, I definitely want us to have a chat to Ronni, queer, disabled, has a lot of random shit to say, and then goes on to say, I'm a virtual assistant by day and a digital artist who sets up a booth at art markets and sells her little shirts and stickers by night, and that's a business also.

[00:03:09] Ronni runs called Club Bionic Art. Ronni goes on to say I have a genetic disorder called Ehlers Danlos Syndrome, EDS. I'm sure I didn't pronounce that right, but Ronni will explain. And that has had a whole heap of different symptoms. It's really an invisible illness. I learned a lot from Ronni. I love this conversation.

[00:03:36] So I hope you enjoy our chat. I hope you enjoy this episode. Welcome to Wellbeing Interrupted, the podcast dedicated to exploring the transformative power of a healing mindset. I'm Teisha Rose, your host. and the founder of Hurdle2Hope. If you're on a quest to not just survive but thrive after a life changing diagnosis, then you're definitely in the right place.

[00:04:05] Living with MS and now stage 4 breast cancer has taught me a vital lesson. In the face of a life changing illness, our mindset is everything. Each week I'll share insights, tips and strategies to help you build a happier, healthier, So let's begin your journey from hurdle to hope starting right now.

[00:04:35] So welcome, Ronni. Thank you so much for being here, part of the Wellbeing Interrupted, um, podcast.

[00:04:44] Ronni Morgan: Thank you so much for having me. I'm really excited to be here.

[00:04:47] Teisha Rose: You're welcome. And we should say, um, up front, I'm here sitting in my caravan in Australia. So where do we find you today?

[00:04:57] Ronni Morgan: I am in Northern Indiana.

[00:04:59] Um, You know, it is a very interesting place to be right now.

[00:05:04] Teisha Rose: Yeah, we're pretty aware of things have been happening over there at the moment here in Australia. So I bet it's interesting. Absolutely. Yes. And, um, and look, we'll touch on that a little bit later on, because what we really want to talk about here today is the importance of advocacy for those of us living with a disability or health condition and Sometimes what happens in the world politically will impact that.

[00:05:35] So yeah, I'm more than happy to, um, have a bit of a chat about that as well. Um, so we have connected and I just really was interested in sharing your story in relation to this, I guess, series we've been doing on Hurdle2Hope stories, because it's really important to shine the light on different disabilities, different illnesses that sometimes we haven't heard about.

[00:06:03] And that's certainly the case when I was reading your details. So we sort of jumped straight in. Can you give us a bit of a story as to you had some symptoms. I read here, you know, your hips went mushy. So that piqued my interest and thinking, Oh, I wonder what that feels like. Um, so can you take us to some of the symptoms you had and what you were diagnosed with?

[00:06:29] Ronni Morgan: Yeah, absolutely. So all of this kind of started for me when I was around 25. Um, I'm 37 now, so it's been, it's been quite a while. Um, you know, I had some symptoms when I was a kid, but. They could never figure out what was going on. I had a lot of knee issues, a lot of knee pain, very severe, a lot of swelling, stuff like that.

[00:06:49] And they could never figure out what was going on. So they just kind of wrote me off. Um, and as a kid, you don't advocate for yourself because how can you, you're a kid, right? Um, so that kind of, that kind of waned for a while. And then when I was around 25, uh, I was a hairstylist. And I was working behind the chair one day cutting someone's hair and all of a sudden I got this sensation in my left hip like it just went mushy.

[00:07:15] That's how I describe it. It was like somebody took my joint out and replaced it with a wet sponge. And yeah, I kind of froze. Um, I didn't want to like pause the scene. Uh, I'm not one for that. So I, I just kind of froze. I took all my weight off of that leg and I kept cutting my client's hair. And after a little bit, it sort of stopped and it was probably about the next day that the pain set in.

[00:07:46] Um, it felt weird, uh, the mushiness, and then it felt kind of odd after that. And then the pain started the next day. And. It progressively just got worse and worse. Um, within about a month of that starting, my right hip started doing the same thing. And I had never had issues like that before, right? Like I have endometriosis and I was, I've been dealing with that for a very long time.

[00:08:12] Um, but like having issues with joints and things like that, that severely, uh, it was very foreign to me. And I thought this can't be, this can't be anything serious. Like that doesn't happen to me. Like I'm, you know, I'm, I'm a runner, I'm healthy. Like I take care of myself, you know. And so eventually I didn't have great health insurance, so I put off going to the doctor for as long as possible.

[00:08:36] Um, and that was only for a few months, and then I finally went, and they ordered an x ray, and she said, Well, there's some narrowing in the joint, but not a lot. Um, I think it's fine. Uh, I did test you for, for rheumatoid arthritis and your numbers are borderline. So I'm going to send you to a rheumatologist.

[00:08:55] And I said, okay. And one of my aunts has, has RA. So I thought, and she also has endometriosis. So I'm thinking maybe that's what this is, you know? Um, so I go to the rheumatologist and he ran more blood work and he said, you know, your numbers are not close enough for me to diagnose you as having rheumatoid arthritis.

[00:09:19] You're young and you're healthy otherwise, so I think, you know, just keep taking Tylenol or Ibuprofen as needed and I think you'll be fine. I think it'll pass. And that is, it's what I wanted to hear because I didn't want anything to be wrong with me. Um, but what I realized now was that once again, I was being written off and I still didn't know how to advocate for myself.

[00:09:47] Because he told me what I wanted to hear, really. I wanted to hear that everything's gonna be fine, just give it some time. So I gave it some time, and it just progressively got worse and worse, especially my left hip was worse than my right one. And I just kind of called it my granny hip and made a joke out of it because that's how I tend to cope.

[00:10:07] Because my therapist likes to remind me I cope with humor. Um, called it my granny hip and just kept on, kept keeping on. Like I just, you know, I kept hobbling around and my gait was getting worse and worse. I had a really deep limp. Um, so much pain after I would get done working that I would just sit in my apartment and cry and try and ice it.

[00:10:29] And. It was bad. It was really bad. Um, and when I got to a point, I, I went through a really bad breakup and I had already owned my own salon at that point. Um, but I realized I didn't really recognize my life anymore. My health was declining. Like my hip was bad. I, my, I have POTS, um, which is kind of To say it quickly, it's like a fainting disorder.

[00:11:01] Um, it can cause you to faint. Um, my symptoms of that were getting really bad and my life just didn't feel like mine anymore. And I wanted to travel. I wanted to do something totally different. So I sold my salon. and decided to go overseas for a while. Um, and my girlfriend at the time was like, are you sure you shouldn't go to the doctor one more time before you do this adventure?

[00:11:29] And I was like, nope, I'm going to be fine. I got this, you know? So I went overseas, got a one way ticket to Italy. and went on my way. Um, and I was doing a work away. So I was, uh, if you're not familiar, if you're listening, you're not familiar with what work away is. It's a website, workaway. org, and you can find people all over the world to stay with.

[00:11:55] And you basically do some kind of work for them in exchange for room and board. So that's really how I traveled. And I landed by And I say this is like one of those universe intervention type moments, um, ended up with a girl in Croatia and she was in medical school. And one night we were sitting at the table, uh, over a glass of rosé and I finally just started talking to her about my hip issues.

[00:12:26] And she made it her mission to help me. And it is much more affordable to go to the doctor in Croatia than it is in the United States. So with the help of a neighbor, we got me an appointment with an orthopedic doctor. I went and saw him. He ordered x rays. I went and got those. And a week later, I went back to see him and he said, in his very deep Slavic accent, he said, well, Ronni, I don't have good news.

[00:12:58] And that's when I found out I needed my hip replaced. And he was like, you need to go get this taken care of. This is bad. I don't know how you're even walking around on this. Like, this is, you're, you're bone on bone. Like, this is not good. Um, But I had plans to go to Spain after that, after Croatia. So I was going to follow through on that.

[00:13:19] And I did, ended up with crutches. That's when I got my, my first set of walking sticks, if you will. Um, and then traveled through Spain with a friend for a few weeks, went to Germany for a week, and then I went home and got myself on insurance. And when I got to my doctor here in Indiana, Uh, is when I found out I needed both of my hips replaced.

[00:13:44] Um, yeah. So, and they couldn't tell me why they couldn't tell me what happened. They said, sometimes these things just happen. And I was like, well, that's not helpful. Um, so I had both my hips replaced in 2018 and I was hoping that once I had those replaced, everything would go back to normal and that's not what happened.

[00:14:11] I ended up with. severe, severe back pain and had to have some nerve endings burned off. Um, and then I kind of cruised along for a few months and, and things were steady. Um, and then one day I got a headache and I thought me, I still remember that day. I remember it like it was yesterday. And I thought, I probably didn't drink enough water today.

[00:14:38] You know, it was my first instinct. And for a few days it came and went and then it set in. And it's, it's, it stayed there for like nine days and a close friend of mine said, you know, Ronni, you need to go to the emergency room. Like, this is not normal. Nothing is helping you. Nothing over the counter is helping.

[00:14:57] Like you need to go. So I did, and they could not figure out what was going on. And I ended up in the hospital for 15 days. And over the course of that time, they treated me with almost every migraine medication over the, like that they could find, nothing helped. They tried various pain meds. Um, they, I had to be put on anti nausea meds, like they, and I just laid in a dark room with an ice pack for 15 days in the hospital.

[00:15:31] And it was, it was bad. And now I have severe anxiety about having to go to the emergency room because I'm afraid I'm going to end up in there again for weeks. Um, You know, we don't talk about like medical PTSD and it's very real. Um, and so that was, while I was in the hospital, my doctor came through to do his rounds and he said, and he's been my doctor for my entire life, um, except for when I wasn't living in Fort Wayne, Indiana, when I, when I came back when I was a kid.

[00:16:02] And then when I came back, the same doctor. And while I was in there, he said, Have you ever heard of hypermodal Ehlers Danlos syndrome? And I said, no, never heard of it. And he was like, I want you to do some reading about it tonight. And when I come back tomorrow, we'll talk about it. But he's like, I think there is a very real chance that that may be what's been going on this entire time.

[00:16:29] And I appreciate him so much because he actually does research on his own time for his patients, especially the complex ones like me. Um, so I read up on it and, um, I was like, you know, there's a lot of things that align here, but there's some things that I'm not so sure about. I don't know. You know, I don't know, but maybe.

[00:16:50] And so he put a referral into a specialist, a geneticist down in Indianapolis. And it took me about nine months to get in with her. And all the while I was having really bad flare ups, my neck, I had pain in my neck and the left side of my head every single day of my life. And some days it was really bad.

[00:17:11] Um, and it would be really bad for weeks at a time. Um, And I would be bedridden, ice packs, just can barely eat. Like it was, it was really, and they put me on high dose steroids, um, to try and manage the pain. And I don't know if you've ever been on high dose steroids, but oh my, it is, it's horrible.

[00:17:32] Teisha Rose: Horrible.

[00:17:33] Ronni Morgan: Yeah. Um, so I was on high dose steroids for about 10 months. Um, my orthopedic surgeon was very concerned because of my other joints because you know, those steroids attack your joints. He's like, we got to get you off of these as soon as possible. Like, it was just, it was not a good scene. Um, so I finally got in with that geneticist and She immediately, I mean, her testing takes hours.

[00:18:02] Like I was there for hours and she put me through all the testing. We talked about all of my symptoms, everything I'd been through. Um, and she tested, she was like, I think that you absolutely have Ehlers Danlos Syndrome, but I need to test you for something else first to rule that out and make, you know, and then we'll see, we'll go from there.

[00:18:22] Um, Now, meanwhile, my neurologist here in town, I had asked her for an, for what's called an upright MRI, um, and because all the reading I had done said that is the kind of MRI you need to be able to diagnose X, Y, and Z, and she wouldn't do it, and when I told her they thought I might have Ehlers Danlos Syndrome, she said, I don't think that's it.

[00:18:47] I don't think that's what's going on, right? Dismissed it entirely. So when I see the geneticist, one of the first things she says is, we got to get you an upright MRI. One of the first things she said, and you know, long story short in this, in this part, I do have hypermobile Ehlers Danlos syndrome. They did do the upright MRI and I have craniocervical instability.

[00:19:13] So my neck is, has a lot of hypermobility and it's, it's unstable. It takes a lot of work to hold my head up. Um, and there's not a lot they can do about it aside from fusing joints in my neck. Um, and I really don't want to do that if I can avoid it. So once we found that out, we knew, okay, we need to get you on medication for nerve pain because that's what's causing a lot of these issues are, are pinched nerves and things in my neck because of the instability.

[00:19:45] So eventually I was put on a pretty high dose of Lyrica, which is a nerve pain medication. And It is the first thing that has actually made a huge difference. Um, and it is keeping me stable now. So I take it twice a day, um, and it has been allowing me to live a relatively normal life without severe pain every day.

[00:20:11] I would say I have, I'm at about a level two, three daily. And when I get a flare up, it usually will go up to like a 6 7, but I haven't been on that level 10 pain for a long time. So, that's my, that's my story.

[00:20:30] Teisha Rose: Wow, that's so much for you. Like, there's so much in that, um, story. And, yeah, it's, I guess we can talk about I'm sorry, my mind's going because I mean, it's dealing with chronic pain, which so many people have to do.

[00:20:47] Um, and that's horrendous, but to have it up to a 10 and just that much pain for so many years, that must have mentally been really tough for you.

[00:20:58] Ronni Morgan: Yeah. A lot of therapy, a lot of learning coping skills, um, a lot of therapy. I can't stress that enough. Um, it has been a, It's been a very long journey of learning to cope and having to redefine my life around the pain, um, because I refuse to stop living my life.

[00:21:29] And that has been what has sustained me is that, that level of stubbornness. to say like, I have got to figure this out one way or another because I have a life to live.

[00:21:45] Teisha Rose: Yeah, good on you. And that's what I've talked to other guests about this fine line, and that you need this determination, like you do need to accept help sometimes, absolutely, but also accept determination.

[00:22:00] Um, sometimes, and I know in my 20s with MS, months, months in hospital. It was like, right, I want to travel still. And I love that about your story because after spending months in hospital, the next year I was out of the wheelchair and went overseas by myself for the year. And it's that same thing, like, you know, that's having that vision of freedom and being overseas, but then also being realistic about what we can and can't do.

[00:22:28] 100%.

[00:22:29] Ronni Morgan: There's, there's a very delicate balance to be to be found.

[00:22:34] Teisha Rose: Yeah, that's right. But it keeps, keeps the momentum going if you do have that determination. And then, so how are you feeling? Because lots of people will be in the same situation of, it's like you're banging your head against a brick wall, just trying to come up with answers and not being treated with respect.

[00:22:56] Like you saying, I want a certain type of MRI. That being dismissed, like how frustrating was that?

[00:23:05] Ronni Morgan: Incredibly. And I will say the way that I, because I felt powerless in those moments, because I wasn't being listened to or heard. And when I found out after, well, when I found out about having hypermobile Ehlers Danlos syndrome, which I should probably Give a little background about what that even is at some point.

[00:23:27] But, um, when I found out that I had that, and when I found out that I had cranioservical instability, I sent a very lengthy email to my neuro, to my neurologist here in town. And I was kind, but I was also very direct.

[00:23:48] Teisha Rose: Yeah.

[00:23:48] Ronni Morgan: And I said, you dismissed me when I told you these things. And as it turns out, those things are exactly what I needed to get the answers that we've been looking for for over a year.

[00:24:02] And I understand that in medical school, you are taught to, if you hear hoof, hoof beats, think horses, not zebras. That's what they learn in medical school. But I said, sometimes you're going to come across a zebra and that is me. And I hope that the next time you come across a complex client or patient, you're that you think of me and you do things a little bit differently.

[00:24:29] And writing that letter, I never got a response which is fine, but writing that letter Allowed me to take some power back

[00:24:38] Teisha Rose: and I

[00:24:39] Ronni Morgan: needed that.

[00:24:40] Teisha Rose: Yeah, that's great. And you're right. Let's take a step back and explain, because all I've written down is H E D S. Is that H D E D S? Because I'm like, what? So yeah, so just take us to that, because is that a different condition to the cervical things that are going on or is it all a part of it?

[00:25:01] Ronni Morgan: So my cervical instability is a. Uh, symptom of my heads. So Ehlers Danlos syndrome is a connective tissue disorder. Uh, so to kind of break it down the easiest way possible that I explain it is that my body creates faulty collagen. So our entire bodies are made up of connective tissues. Nothing in our bodies are, are, uh, unimpacted by connective tissues.

[00:25:32] So mine are weak. Okay. So it causes a variety of, of issues. Um, and they show up, it shows up similarly in people and totally differently in people. It's, um, it's just totally dependent on what your body's doing, um, because of the EDS. So for me, my hips went, um, hypermobility, they were constantly overextending and, you know, as such caused fluid in the joint and that fluid being in the joint for a prolonged period of time caused a breakdown of the, um, tissue, the cartilage.

[00:26:15] That's the word I'm looking for, the cartilage. Um, there's a high likelihood that that same thing is now happening in my knees and another one of my symptoms because of having weak connective cranioservical instability. So that is, you know, I have a variety of mobility aids. My ankles are very hypermobile, so they roll a lot and Um, I get partial dislocations in my fingers and, um, there are some people who dislocate joints constantly, like full dislocations.

[00:26:47] I'm lucky in a way that I don't have that happen, knock on wood, um, but I have to be very careful. Um, so, that is kind of, and there's, I should know this by heart, but there's 12 or 13 different types of Ehlers Danlos Syndrome. I have the hypermobile variety. Um, but there's like vascular EDS, which is an extremely dangerous type of EDS to have.

[00:27:13] Um, the lifespan for people with, with vascular EDS is not great. So again, I am lucky in that way. Um, so yeah, that's, that's in a nutshell what it is.

[00:27:26] Teisha Rose: Yeah, so no wonder it's like you're putting out spot fires everywhere, you know, into Yeah, I call it

[00:27:31] Ronni Morgan: like whack a mole. It's like whack a mole. You just, something, a symptom comes up and you just have to like, figure it out, you know?

[00:27:38] Teisha Rose: Yeah. Um, yeah. Which, and that has led then to Big changes in your life, I'm guessing, you know, from, and you talked about owning a salon and being a hairdresser. So what's life look like now, um, in terms of career wise?

[00:27:57] Ronni Morgan: Yeah. So when I, as I was finishing up my career as a hairstylist, I actually went into coach training, uh, because I thought I wanted to be kind of like a life coach, breakup coach, help people through big life changes.

[00:28:10] Um, so I went through coach training and I did that for a while. And I realized pretty early on that while I enjoyed coaching, I really liked the back end of the business more. Um, the tech piece, uh, the, the nerdy piece, the piece that a lot of people hate. Um, you know, I love building websites and automating things and building funnels and landing pages and, um, doing social media stuff.

[00:28:40] And I've always been a writer. So I like to do creative copywriting. Um, so that is what I started focusing on and my business has taken on a few different iterations over the last six years or so. Um, but I have kind of landed on the title of virtual assistant, but I have a focus on websites, tech automation, creative writing, um, and it has allowed me to have the accommodations that I need.

[00:29:14] Um, not only with my disability as with EDS, but I have ADHD pretty severely. Um, and it has helped me be able to create a work environment that works for me. Um, I could never work a normal job. Normal 9 to 5 would never work for me. Um, I have flare ups out of nowhere. I can't focus in certain environments.

[00:29:39] Like, it just, it just wouldn't work for me. So, I've had to create my own, create my own world over here. Um, and I love it. You know, it's, I'm, I'm kind of rebuilding after a bit of a hiatus and it's going really well. So, you know, what more could I ask for, really?

[00:29:56] Teisha Rose: Yeah, but I think that's such an important message for people because we have to have an open mind.

[00:30:02] It doesn't mean that we can't have a career. I started corporate, you know, and then I went on and you do all these changes and I did then social work and now, you know, I'm doing my own business. I worked in the disability sector a bit and now I'm doing, you know, Like you, you know, doing different things because the same, there's no way I could do a 9 to 5.

[00:30:23] Doesn't mean I can't work super hard and I do lots of hours, but I need it around my body. My, just everything about me is a little bit difficult, you know, to fit into a 9 to 5.

[00:30:37] Ronni Morgan: Yep. I get that a hundred percent. It's just, I, you know, the, the quote unquote normal world doesn't really work for us when we have disabilities.

[00:30:48] It wasn't created for us. So that's why I say we have to kind of do our own, our own world building, you know?

[00:30:55] Teisha Rose: Yeah. And I found COVID was interesting and interesting people's response because I felt like, like all of a sudden I had to do the audits I was doing from home. I loved it. I was like, great, you're part of my world now.

[00:31:09] You know, this is great now that, you know, that's not happening. And I'm thinking, oh, so you all leave us to Behind again. It was for that moment. I felt like we're all part, you know, all on the same page. I'm like, welcome to my world. Yeah. Yeah. Yeah. And people weren't coping and

[00:31:26] Ronni Morgan: like, yeah. And

[00:31:27] Teisha Rose: I'm like, really, you've only got it, you know, maybe a lockdown for a few months, but you know, well, like you said, welcome to our world.

[00:31:34] Ronni Morgan: Yep. Absolutely.

[00:31:36] Teisha Rose: It was a

[00:31:37] Ronni Morgan: very interesting time for sure.

[00:31:39] Teisha Rose: Yeah, it was, it was. Um, and in terms of Invisible, like another, Like, there's so many elements of your story that so many people will get a lot out of. And I think it's this invisible illness, um, as well, that there's so many people going through things that we don't know, um, and it's important to shed a light on those as well.

[00:32:03] So do you find, how do you find it, navigating life with invisible, um, illness or, you know, disability? for having me.

[00:32:12] Ronni Morgan: Yeah, you know, I think what's interesting is I've learned a lot about my own kind of inner ableism since I have been diagnosed and it took me a while to be able to even claim the word disabled.

[00:32:30] It was very uncomfortable for me at first. It's a lot of things. I talked to my therapist about it at length and You know, I think one of the things that I realized, um, because of my own lived experience is that when I have to use some of my mobility aids, of which I have many, everything from braces to crutches to a walker to, um, I have an electric wheelchair, I need different things on different days.

[00:33:00] And The thing that I think people don't realize is just because you see someone with a neck brace on one day and not the next, or somebody in a wheelchair one day and not the next, doesn't mean they're not disabled. It means we have a dynamic disability and we need different things on different days.

[00:33:20] And that's something that, you know, I used to think if you were in a wheelchair, you were in a wheelchair, right? Like that was, you were in it. That was it. You didn't walk. That was what you did. That's not true at all. Yeah, that's not true at all. And so it has really opened my eyes to not only my own situation, but other people's as well.

[00:33:41] Um, a lot of people are walking around with dynamic disabilities. Um, I have a handicap placard for my car that is, you know, it's no expiration, so I'll have it the rest of my life. And I use it frequently. And I think people probably judge me every single day. Because they see me hang that placard and get out of my car and walk into the store.

[00:34:00] And if I don't have any mobility aids on or with me, they're like, well, what's wrong with her? You know? Um, so I think telling my story and making it more public, I hope will help other people understand that just because somebody doesn't look disabled doesn't mean they're not disabled. It doesn't mean they don't need accommodations.

[00:34:30] And I think we all need to have a little bit more tolerance for each other.

[00:34:34] Teisha Rose: I love that. 100 percent right. Because, and it's, I think too, accepting ourselves is a big one. I've got a walker. I didn't want to use a walker for years. You know, I was risking or falling over and then I was, I haven't had a relapse for a long time.

[00:34:51] And I was thinking, well, I don't want to use this walker. And it's like, now I've got the off road one with suspended suspension that I can go on out 100 acres and everything. So I'm doing that and not watching others walk around our land. And then I've got one that looks a lot nicer that I take out with me.

[00:35:08] If I'm going, it's easier too. And you're right, there's different things. And for everyone listening, just don't say anything if someone's in a disability park, because I get the exact, I had this conversation with Andrew last night, sorry, I told you I'd start talking. And I said, this lady gave me the most filthy look, um, with, Because I pulled into a park and I think all you can see is my head, you know, you've got no idea, you know, I get out and I need, you know, I get my walker out of the car and all, and then all of a sudden she was looking and oh, so that's okay.

[00:35:47] But you're right, I'm the same person if I then Because the trolley's close by, I might sometimes walk 10 steps to get a trolley and use that, you know, to walk around. So then she'd still be angry at me and I'm like, really? Like, we don't want these parks. I'd rather park a kilometre away and walk, but I can't.

[00:36:06] Ronni Morgan: Yes. Yes, a hundred percent. And I, I hope, like I said, that the more of us telling our stories that have these more dynamic disabilities, the more people will stop being so judgmental and throwing dirty looks our way. And you know, it's just, yeah, she doesn't look disabled.

[00:36:26] Teisha Rose: I know. And what's that meant to me?

[00:36:29] Exactly.

[00:36:30] Ronni Morgan: Exactly. I'm like, so tell me, tell me what is looking disabled?

[00:36:34] Teisha Rose: Yeah.

[00:36:35] Ronni Morgan: Yeah. That's right. Break it down for me, please. Yeah.

[00:36:38] Teisha Rose: Yeah. Oh, you want to sometimes. I just, yeah, but you don't. The only time I did once is someone yelled out, who's in that disabled? I said, no, she said, who's parked there? And I said, not me.

[00:36:49] I'm in the disabled spot. And then she said, well, why would you be like yelled at me? Why would you be in? And I was like, I'm sitting down. You can't see me. I've got MS. And then she went really bright red and embarrassed. And I said, well, just, you know, I hope you are embarrassed. Don't make judgments in front of everyone and embarrass me and now yourself.

[00:37:09] Ronni Morgan: Yes. Well, and why do I owe anyone an explanation either? Yeah, that's true.

[00:37:13] Teisha Rose: I'm like,

[00:37:13] Ronni Morgan: they don't hand out handicap placards like they're candy. No, that's

[00:37:18] Teisha Rose: true. Like,

[00:37:18] Ronni Morgan: it's a process.

[00:37:20] Teisha Rose: Yeah, yeah, yeah, that's right. We've got a neurologist signing off on it, you know. So, yeah, you're right. Exactly. You're right. Um, and look, we touched on it before and we talked about it, um, before we, I pressed record.

[00:37:34] So the political landscape in America has changed significantly and I live in Australia, so I'm watching from afar, but certainly lots of the disability advocacy groups here are concerned, um, because they have said that, um, Um, you know, some of the language used by Trump, um, in terms of those living with this disability is scaring us enough in Australia to think what is that going to have impact on what people think is okay, you know, and what support can be.

[00:38:14] taken away, um, which would have a massive impact on those living with a disability. So, you know, you're living in it and Yeah. So just share with us, you know, what that feels like at the moment, um, because we're talking about car spaces and that's sort of almost trivial to what you're really navigating through at the moment.

[00:38:43] Ronni Morgan: Yes. Um, it is very, we know based on what we've been told that Public funds that go to helping people with disabilities, people that need welfare, all these different things are going to be gutted under a Trump presidency. And that is terrifying because we're talking about people that need it to live for their homes.

[00:39:15] You know, they're criminalizing being houseless. And what are people to do when you've got people who rely on disability to keep a roof over their head? You know, and we already have, you know, we talk about marriage equality, right? So I'm, I'm queer. I'm getting ready to get married this weekend. Um, if I were on disability, I would lose my benefits just because I got married.

[00:39:46] Teisha Rose: Yeah. Yeah. Right.

[00:39:47] Ronni Morgan: That's already happening. That's been happening.

[00:39:50] Teisha Rose: Yeah.

[00:39:50] Ronni Morgan: So to take it further and just start gutting these programs and cutting the assistance that people need to survive.

[00:40:02] Teisha Rose: Yeah.

[00:40:02] Ronni Morgan: Which is going to happen.

[00:40:05] Teisha Rose: Yeah.

[00:40:05] Ronni Morgan: Is absolutely terrifying. I am lucky that I'm in a position that I can run my own business That I have a partner who works full time and does well for herself.

[00:40:17] That I have had family to put a roof over my head when in times when I haven't been well. Um, I'm very fortunate, but a lot of people that I know aren't. And I can tell you without a single shed of doubt that the people that voted for him did absolutely not have the millions of Americans living with disabilities in mind.

[00:40:45] Teisha Rose: Yeah.

[00:40:45] Ronni Morgan: It's a scary time to be here.

[00:40:48] Teisha Rose: Yeah, it's, it's, it is, it's scary from afar. Um, looking in the ripple effect that has as well, because As I say to people, I could be your sister, your daughter, your partner, like we are, we live our lives, we want to do all of these amazing things in our 20s and then all of a sudden, like I was 22 when MS happened, 25 when I was really, really sick and then traveling, and also you, you know, We want to be contributing.

[00:41:21] We want to be doing things, you know, so we've got all these dreams and skills and can be such massive contributors to the countries we live in. And then to be treated like that, we're not in these positions through any fault of our own, you know, and to be treated like that is awful. And also, The language and narrative around people with disabilities, that's what I find so, so unkind, you know, there's no other word, like it's just horrid.

[00:41:55] Um, so yeah, so it's a really, it is scary. And I think people listening to this is be kind and, you know, just think of those. We're not a, a silent school. You know, group of people that can just be shut away. You know, we're part of this world, um, and we should be treated and included like that.

[00:42:21] Ronni Morgan: Yes. And that's what I posted something recently that talked about, you know, this reckoning that's going to be happening and is already happening in the United States.

[00:42:31] And it was almost a plea not to leave disabled people behind.

[00:42:35] Teisha Rose: Yeah. Yeah.

[00:42:37] Ronni Morgan: Because there is, you know, so much. It's very real, like, we can contribute as much as we possibly can to this revolution, if you will, but we are exhausted on a whole other level than people living without disabilities. And we have pain, and we have mobility limitations, and we have all these things that, you know, I may need someone else to fight for me for a while because I don't have the capacity or the bandwidth to do it for myself.

[00:43:07] And That's where we need our, you know, able bodied siblings to step up and, and, and think of us and not leave us behind. You know, it's, it's, it's, it's, it's, it's, it's,

[00:43:22] Teisha Rose: It's not a lot to ask, you know what I mean? Like it's just being kind to those, you know, others around you. We don't know, you know, someone could have an accident and all of a sudden have to, like us, use walking aids or being in a wheelchair or like life can change so quickly, um, that we just need to be mindful of that, you know, and what world do we want to create?

[00:43:49] Ronni Morgan: Yes, a hundred percent. And that's one of the things that I try and tell people too is that you could become disabled in the blink of an eye. And many people, most people do not go their entire lives able bodied, you know, they age and they suddenly have joint issues and really bad arthritis and things that, that end up limiting them and putting them in chronic pain.

[00:44:12] And they may have been their whole life. They may have been totally fine. And now, now they're not, you know, so I think. Most people are like a single door away from finding themselves in the same boat that we're in.

[00:44:29] Teisha Rose: Yeah. Yeah. And then, you know, and

[00:44:32] Ronni Morgan: they think, Oh, go ahead.

[00:44:34] Teisha Rose: No, no, no. You go. Yeah. And I think

[00:44:37] Ronni Morgan: they think that it won't happen to them.

[00:44:39] You know, they think, well, I can, I'm too healthy for this. Like I take care of myself. I I'll never have this issue or whatever what else. And to your point, a single accident could happen and suddenly they're disabled. I've seen it happen many, many times. You know, and to your point earlier, we didn't do anything to cause this to happen.

[00:45:00] And that scares the hell out of people.

[00:45:04] Teisha Rose: Yeah. Yeah. That's right. Because if you can put the blame on the individual, then it's like, well, I'm safe. I'm not going to be like them, but it's like, no, you know, we're both intelligent. You know, I did the same, like I went to university, I've got three degrees, you know, and also we can contribute.

[00:45:24] Um, and probably even more so now because we have this lived experience and I'm the same. It's like, I. Part of me thinks it would be easier not doing this work that I'm now doing because I wouldn't have to be thinking of my illnesses all the time. But it's like, no, maybe we have this for a reason to, we're able to articulate what's happening and we're able to advocate.

[00:45:48] And I think that's important. So that's, you know, why I'm thinking, well, let's put voice to these, what we're going through. So what you're doing is really important. And I think before. Um, before we go, um, in terms of, I love your writing, I love your socials and all, and, you know, um, we're going to, of course, your socials, if, if, if what we're talking about, you, you've already hit stop, that's okay, you know, um, but if not, and you want to connect with Ronni more, how can people get into your world?

[00:46:25] Because I've learned a lot from you, and Oh, your bio is so good. At the beginning, you know, you talk about, you know, queer, disabled, talk random shit. And I thought, yep, I want you on my, I want you on my show. So, I love that. So, if you, and if you are in Australia and you want to learn more from someone, in, uh, lived, you know, living with a disability and what this means politically for them.

[00:46:51] Hop into Ronni's world because she, she, she'll let you know what she thinks. So how can we connect with you, Ronni?

[00:47:02] Ronni Morgan: Yeah, so if you want to follow along on Instagram, that's one of the best ways to connect with me. It's at Ronni Morgan and that's R O N N I M O R G A N A lot of people want to add an E on the end of my name and I have to always specify.

[00:47:20] Yeah, so you can also check out my blog, which is just RonniMorgan. com. I also make vinyl stickers and t shirts and things like that. It's very queer adjacent, very political, um, a lot of humor, things like that. And that is ClubBionicArt. com. Uh, so you can always check that out, and other than that, and if you have any interest in working with me as a virtual assistant, you can reach out to me on my Instagram, would be a great place to go.

[00:47:51] Um, you can also check out my website, which is RootedSocialCreative. com.

[00:47:57] Teisha Rose: Excellent. That's great. I'll put all the links into, um, the show notes and I'll put stuff on Instagram as well. Um, because yeah, I love what you do. I love the energy you bring to it. And I think lots of people will get a lot out of it.

[00:48:12] out of our chat today. And yeah, as I say to guests, especially the ones I love chatting to, um, you know, we'll chat again next year because I don't want people to, um, you know, get into Ronni's world and find out. So it'd be really interesting for us to have another chat, you know, Um, six months into the new world of what's happening politically there and really what that impact is because I think there's a lot of interest as well from here because we're not protected or sheltered from that in Australia.

[00:48:47] It does still have a ripple effect to what, um, yeah, people think this side of the world as well. Absolutely. Absolutely. I would love to chat again. This has been very fun. Excellent. Well, thank you so much for your time, Ronni. It's been really great chatting to you.

[00:49:04] Ronni Morgan: Yeah, you too. Thank you so much for having me on.

[00:49:07] Teisha Rose: You're welcome.

[00:49:12] So thank you for listening. Hopefully you enjoyed my chat with Ronni and there was so much there for us to take away. For me, it was that The difficulties, I guess, people navigating medical systems, trying to find out what's wrong with them, and that can be really emotionally difficult, but also the physical pain.

[00:49:39] If you're in pain, you don't know what's going on, You know that you need certain tests and they're not being done. That is beyond frustrating, and we do need to advocate for ourselves, but that can become really tiresome as well. So thank you, Ronni, for sharing. for listening. Your story. Please connect with Ronni.

[00:50:03] Go to Ronni with an I, so R O N N I, Morgan. com. Then you'll get to Ronni's Random Musings. And Ronni is also on Instagram, Ronni Morgan. And on Instagram there are links to Club Bionic Art. If you haven't already, I encourage you to go to my website, hurdle two hope.com/stories. I've now interviewed some incredible people.

[00:50:41] Their stories are also different. You know, the conditions we live with are all very different. What I love about that is we can learn from each other and I certainly have done that in chatting to all of these incredible women. So go to Hurdle2Hope. com forward slash stories. And for those of you new to this podcast, Hurdle2Hope is with the number two.

[00:51:10] While I'm plugging things, I'm Also, have a look on my website, if you go to Hurdle2Hope. com forward slash transform, I re recorded the talk or presentation I gave at the MindBodySpirit Festival, fill out the form, and then I'll send you a copy of that, plus the workbook. Because I love you. I'm so excited now about the impact, the insights I'm sharing and having on people, so hopefully you'll find that beneficial.

[00:51:42] Have a visit to the website. and enjoy a 30 minute watch. I think it's about 30 minutes or 40 minutes. Okay, so have a great week. I will be, hopefully, not as hot as last week. It's been really hot here at Daisy Hill, so I've been in the van a lot with the aircon on, so that was working, which is good. Um, but yeah, have a great week and I really look forward to speaking to you next week.