0:02
Welcome back to The pyjama interviews. I'm your host, Michelle Irving. And this podcast is for women living with chronic illness. It's time to talk about what it's really like to live with chronic illness and how to create a life that works for you. And Joe body. I'm thrilled to share this week's interview with you. It's with his econ blow. If you don't know Izzy or haven't come across her work you are in for an absolute treat his he lives with EDS and a range of other conditions. And even as a high school student, she talked to sharing about her experience with chronic illness and getting educated not just about her own experience, but about a whole range of chronic illness conditions. And now she's in grad school learning to be a genetic counsellor. Stay tuned at the end for our upcoming live events with a whole panel of spoonies sharing their experience their creativity and their expertise with you. You were able to join us live Monday, the 13th of September to Wednesday, the 15th of September. All the details are at the other end of this podcast. Now let's dive in with Izzy. Thanks so much for joining me. Thank you so much for having me. It's my pleasure. I'm wondering if you'd like to share with us about your condition and how long you've been living with a chronic illness? Sure. So
1:36
my main condition is hypermobile Ehlers danlos Syndrome or EDS, as I'll probably be referring to it. And then it also causes me some other issues namely pots, which is something that affects my heart rate and my blood pressure makes me feel pretty dizzy. And then the Ehlers danlos Syndrome causes knee joint pain, muscle pain, fatigue, things like that. And then I also used to have gastro precice. Luckily, I don't really anymore, which is really amazing. Yeah, it's gotten a lot better over time. And then another condition that I dealt with a lot in high school was muscle tension dysphonia, which was a problem with my voice, it made it painful to speak and to sing. And I was a vocal major in high school, I went to a performing arts school. So that was very difficult. But it has been a long journey for me with chronic illness. I can definitely say from the time I was a little kid, I was experiencing symptoms, not terribly, it was not disabling. But it just continued to get worse until I reached my teenage years. And that's kind of where I am today.
2:49
And so in that process, what was a turning point for you like when you were little? Did your parents just think you were a bit sensitive? A bit unwell, a bit unlucky? How did it go for you?
3:04
I think they thought I complained a little much. And I kind of bought that I complained a little much as well. So that kind of got into my head. But probably by the time I was 10. And I was experiencing joint pain. I was noticing this is not normal. My parents agreed. They weren't very concerned. But they agreed. So and then it just went addressing each individual joint that was causing the issues assuming that, you know, I just happened to have a handful of bad joints. But as I reached like 14 that I definitely knew that no, this is something that's systemic, and so did my doctors.
3:48
Yeah. Right. And was it difficult to get a diagnosis for you? Or how did that actually work for you?
3:55
It was extremely difficult. I'd say it took me at least seven years of actively looking for some sort of diagnosis. I must have seen over 50 doctors, and the thing is, is that I live in New York City I have so much access to amazing health professionals so you'd expect it to be even quicker here. And even still it took me that long. I was the one who actually found my conditions I'd say online because all of my doctors are pretty convinced that I had an autoimmune disease that was not popping up on any test
4:31
whatsoever.
4:33
So they said you know just keep waiting, keep waiting, take Advil, but when I got into my stomach and experiencing dizziness, and every single doctor said I don't know. I like while seeing doctors I decided to also take it upon myself to do some research. And I do have a sciency mind a sciency background so I also found it very interesting and realise I really like researching medical things, even if it It's not something I'm dealing with. So that was kind of actually the first time I really was introduced to Medicine and Health and Science. But yeah, it took me maybe five years. And then I finally decided to do a search where I included my hypermobility and frequent dislocations in the search bar, and EDS popped up. And it all went from there.
5:27
Right. And so that's really taking upon yourself to look for care for you. And we connected to any chronic illness communities or peer groups, so that this so it's Google provides the answer, which is the very thing that every doctor says don't do.
5:45
Yeah, exactly. I had, I did not have any peer support. I didn't know anybody going through this. And I didn't, I didn't even want to look it up. But I felt like I was left with no choice, no support. I know that there are things my doctors and other health professionals could have told me about and not necessarily conditions, but just ways for me to get support and be more okay with being undiagnosed. That maybe would have made me go into doing all this research, but I was very much alone.
6:16
Yeah. And in some ways, it seems that doing the research and feeling that aloneness, that path actually provided the answer that you talked to them. And that worked out for you. Like, how did whichever doctor you were seeing at that time? How did that conversation go?
6:33
So shockingly, pretty well, I think that many doctors really looked down upon you looking things up on the internet, and I can understand their hesitancy you know, you don't want to look be looking something up, and then actually be scared that you can have something that you don't. And but most doctors, I've probably brought it up to about five of my doctors I was seeing frequently. And they all said, I really don't know much about that condition. Sorry. And I also did have one doctor who said, You can't have Ehlers danlos Syndrome, it only affects your eyes and your heart, which it doesn't and it's not my position to correct the doctor and educate them. But it leaves you in a very strange position. So I ended up finding a specialist on my own with my doctor was telling me Can you try to find somebody we can try to help? And the specialist diagnosed me.
7:25
Oh, that's fantastic. I mean, I remember I have an autoimmune condition. And the journey for me was I went because I had dark circles under my eyes at 35. so incredibly young to be concerned about beauty in a overall way. And in the process it took a year, but I got a diagnosis for a rare autoimmune condition simply because I was failing. And that process included genetic testing, and a whole lot of things to rule it out. But I was really so that anxious and curious, but also annoyed with seeing so many doctors and I'm wondering, what was your emotional experience of this process as a young person?
8:15
I think I kept holding on to hope that each appointment would bring answers and each appointment didn't. So a lot of disappointment. And I think it also made me feel extremely invalidated in my symptoms, because why couldn't they find an answer? And yeah, luckily, not many doctors questioned was I actually having symptoms? I have had doctors question that. But not as many as I have some friends whose doctors questioned it all the time. And I can't imagine going through that consistently. But he was just they, they didn't know what was wrong. So that was very scary and sad. lonely. I felt so isolated. I didn't think that I could even have any symptom management without a diagnosis, which is honestly false. And I do wish that a doctor had actually brought that up to me in my mind it was diagnosis or no help.
9:08
Yeah, fantastic. So that's really clarifying. Because my next question was, what is how treatment then worked for you? And did you get relief?
9:21
Yeah, I definitely got a lot of relief. The main treatments that I've gone for relate to pain management, I take a medication every day that really helps my symptoms and really transformed the amount of daily activities I can do. I didn't you know, it wasn't very hard for me to make it to class anymore. I in you know, undergrad, I have to walk all the way across campus and you know, I just it really hurt my joints. I also started developing pots, probably like full fledged pots at a must have been at the end of my sophomore year and I didn't get diagnosed for another A year with pause. And so that has by far once I started taking medications really just changed my life. And I could have could have taken things beforehand. I know for a fact that one of the medications that increases my blood pressure would have helped for the years prior. But it wasn't, wasn't shown to me as an option.
10:24
And so how did you or family in all of this process like you're saying that they felt you complain? A bit? And then they've gone to treatment and interviews? Sorry, doctors with you. But how was that for you in the family not knowing what was actually wrong?
10:44
You know, I think that they took it pretty well. But I don't think that my parents understood the degree to which I was affected, I oftentimes update them on this doctor said this, this doctor said that or they'd come with me to the appointment. So it felt like I was, you know, being proactive, and they listened to those things. And they were happy to hear them. But I don't think I expressed to them how much these symptoms were bothering me and how they came in the way of my daily life. And I do wish I had because I think then I would have been more willing to do certain activities with my family or, you know, be happier and less scared to go on vacation. For example, I mentioned earlier, you know, I love travelling. It's scary to because I'm travelling, and I don't necessarily always feel so great. So if I had expressed a little bit more about how this is impacting me, they would have made it these accommodations, these changes, we would have discussed it a lot earlier, which is something that we do now. And it's very helpful.
11:49
And what how does this translate for you in terms of schooling experience? And then when did you decide to start a YouTube channel? Yeah.
12:02
So with schooling, I think that high school was really hard for me because I didn't know about accommodations. So like I mentioned, I went to a performing arts high school, I had to four of my classes a day or voice and music classes, and then four to five were academics. So half of my day was filled with voice classes, many of which I had a stand during like during chorus and during a specific voice class. So that would have been 80 minutes a day, I had a stand. I was so dizzy. And I would wait until I actually thought I was going to faint within the next minute to raise my hand and asked to sit down. And even then I was met with these like stares of you know, why are you doing that? You know, you're not allowed to do that you shouldn't be doing that. And it made me so uncomfortable. I felt like such a burden. I felt like I was doing this to myself. And if a doctor had asked me, what things are you struggling with in your day at school? And how can we make an accommodation?
13:05
I literally could have gotten a note that said allowed to sit down in chorus II my life would have been completely different. What? Yeah, yeah. And it's meeting that judgement about the expectation of what we should be able to do, because the illness itself, even undiagnosed, it's all invisible. You can't see somebody feeling dizzy, and I get vertigo, I have a condition that gives me vertigo. And then, for me even going to work, it's like, I might get pale. That's the closest thing that somebody can see. But I'm like, Okay, I need to leave now. I need to hop in a cab and I need to get home and lie down until my body resets. Exactly. Yeah. So what point did you decide you've gone from people not being able to see it people judging it getting diagnosis, some treatment, and then you're like, whoo, I'm gonna tell everybody on YouTube. How did that work for you?
14:08
So this is a bit of a story, I guess the journey from before I was from before I was diagnosed and I found Ehlers danlos Syndrome. I was researching for so long trying to figure out what was wrong. And after I was diagnosed, but even before so I was doing so much research and I really started to understand how the condition worked, specifically the hyper mobile type, to the point where I felt pretty knowledgeable about it even just a few weeks after my diagnosis. And I continue to learn more even after my diagnosis because I was so interested, but that's one side of it. Now, the other is that in high school, I felt so alone and even in college, I knew nobody dealing with chronic pain, dizziness, fatigue, anything even close to what I was dealing with. If somebody said that they had like a call Hold, like I was almost not excited for them. But I was like, Oh my god, somebody like, also doesn't feel good because it wasn't just me, you know, and which is wild that I even thought that, but I just felt so alone so many years after, you know, getting pretty bad with my symptoms, I decided to go on YouTube and look up gastro precice which at the time was the condition I was dealing with the worst. And a video came up of a young woman who was around my age, just talking about the realities of gastro precice about feeling nauseous all the time about eating and having it be painful and the struggles when that comes to eating out with people. And for the actual first time, I did not feel alone. And I felt amazing. And with my voice background, my acne background. And all this knowledge that I had I realised maybe I could do something like this specific to Ehlers danlos Syndrome and Potts. And I decided to do that and started off just telling my journey. And then very quickly that transitioned into what is Ehlers danlos Syndrome? Why are there different types and talking about the diagnostic criteria all inspired and completely taken from the Ehlers danlos society and recent studies, it was, you know, I don't I like to quote certain things and make sure all the information I give is very good resources. So yeah, and that's kind of where it took off from.
16:33
So how did it feel being, you know, going on YouTube and making those first few videos? And I'm curious, because you've mentioned this performing arts background, was it helpful? What happened for you? Okay,
16:50
so right when I made my first video, I got probably three comments within the first few days. And all of them were other people telling me a bit about their journey thanking me for sharing mine. And it was all really positive. And it made me feel so good. And it just made me so happy that I connected through this online platform with a few others who were also dealing with similar symptoms. And that felt amazing. When it comes to my performing arts background, I actually felt like I had sort of left behind a performing arts side of me by the time I went to college, and largely because of my chronic illnesses, largely because of that vocal pain I was dealing with, and just so much fatigue. And even though talking to a camera about life's a struggle, and sometimes just doing more fun things relating to health, even though it might not sound like art use, it's so kind of feels like it to me, I still get
17:53
to
17:54
draft my video, I still get to edit it, and make it fun, make it interesting. And it really uses that creative side of my brain and fulfils a lot of that need a lot of that want to do, you know onstage performances. So I think that it was a bit of an outlet for me. And another way that I could express that artistic fun side without having to use, you know, my singing voice or playing piano and hurting my pinky.
18:21
Yeah. And I mean, let's be honest, this is not a small YouTube channel. This is over 23,000 people subscribed to your channel. How How is that for you? You've gone on made a couple of videos, you feel alone. And now there's 23,000 people there, ready to see what you're sharing.
18:46
It's really wild. So I mean, I started off with I want to say I either had zero or one subscribers and no idea who that one was, if it existed, and to reach my first 100 subscribers was amazing. When I reached that 100 Mark, I thought to myself, imagine if I get 1000 subscribers one day and like 100 views on a video, could you just imagine how many people watched your video. And now I get you know, I don't know, 40 subscribers a day. It feels amazing to see some of the same people comment and every single one of my videos and share with me their journey. I feel like I can keep up to date in that way. It feels amazing to know that others care about my journey and care what I have to say. And it also makes me feel really glad that I can share some of the information that I think took me a long time to gather myself. And I think that I know there are some people who
19:48
say, you know,
19:48
I'd never heard of Ehlers danlos Syndrome, but one day YouTube suggested your video to me. That's how I found out that I brought it up to my doctor because I've been trying to figure out my own journey, what's causing my symptoms and I finally got done. diagnosed. So it's just wild how an online platform can do that and really change somebody else's life in the same way that my diagnosis changed. Mine
20:10
is amazing. And while you're fun, you're actually very serious about it. You review products you when you travel, you talk about all the things that might make it easier for us. For women having this condition, do you want to just share like, so you've grown this channel? And it's fun, and it's interesting, but it's also super practical. And you take it very seriously, do you want to share with us like, why that is and how you've come to make that decision and what you actually do?
20:44
Yeah, so I've seen content on YouTube from other content creators, who have the same condition or similar conditions, but are affected in different ways than I am. So I can do certain activities that maybe they can't, or at least they don't show on their channel. And I can still do them, but with a lot of difficulty, and I found ways to help me and sometimes I haven't, and it's still important, in my opinion, just to share that struggle while doing things that you like, or things that you have to do. So I wanted it to be, I wanted it to be very realistic. And I wanted it to be something that you could watch a video and take at least one tip away from or if not a tip, just a feeling of security, a feeling of you know, less isolation, you're not the only one going through it. So that's kind of what I wanted my channel to be like, I want somebody to take knowledge, or just a good feeling away from each video.
21:37
And what are the sorts of content and things that you've done over the years you've done travel and product reviews? Can you share with us? What are the things you like to share?
21:47
Sure, so some of the videos that ended up being the favourites of my audience, just based off their comments, our sit down talks I do about these feelings that I have about having chronic illness and I oftentimes second guess my symptoms and sit here and start convincing myself certain symptoms are in my head, or they're not as bad as they are because maybe I'm not in a flare. Then I start thinking, What if I don't have Ehlers danlos Syndrome? What if I was mis diagnosed? And what does that mean? And these are real things that I have all the time. And I think some of that is internalised ableism, some of that is just constantly being told, oh, maybe it's this, oh, sorry, the test came back negative, we still don't know what it is. And all that combined with people not really believing you are validating You make me have these negative difficult thoughts to deal with. So I like to have those sit down talks where I just talk about what's been going through my mind in those areas, and connecting with others in the comments who have been experiencing similar thoughts and feelings. Other videos I do. I talk a lot about the science behind Ehlers danlos Syndrome, because I'm actually currently doing research. I'm building a collagen model with a genetics Professor right now that we're working on, like 10 to 15 hours a week. It's really exciting, and very interesting. So I can pull from some of that. But I also like to talk about the diagnostic criteria and why some of it is the way that it is because it's actually really confusing for anybody who has EDS or is familiar with the criteria. And the only reason I know the answers to those questions is because I've done a lot of that research, and because I'm just very fascinated. And it you know, it's important to know those things. But unfortunately, sometimes that means investing so many hours to read it. Whereas if you just tell it to you in a video and leave the sources down below.
23:45
Yeah, fantastic. And you look at the daily types of things that help people, including things like compression socks, and you do reviews of has that been helpful for you even to do that, and it looks fun, but it's a lot of work to review things. So how's that gone publicly? Have any companies had any concerns? Or how's that gone?
24:14
So reviewing products that relate to chronic illness are really fun for me. I think that while chronic illness is inherently hard to deal with, there are some really fun things that relate to chronic illness that I can do you or at least I can turn something that I may in the past have been upset about or embarrassed like I don't I think in the past I wouldn't want to wear compression stockings like I don't want them to be seen. Now I actually just don't even care at all. So I've also been able to just put it in a different light of great let me find the best ones which ones are the cutest which ones feel the best and 100 into some of that artsy kind of not artsy but you know, go through the editing process and it becomes really upbeat and fun through me. And I think I hope it does. For some of the people who are watching, too, because it can be hard to take that step and be like, Okay, I'm going to wear these compression stockings, even if it means that this person is going to see them, all the people on the street are going to see them. It's just really fun to review products too. And I have that some brands reach out to me, I've done sponsorships in the past. It's very exciting. Sometimes I'll reach out and just be like, Hey, can we not do a sponsorship? But can you give me a discount for my audience? Because chronic illness is expensive. And I want to talk about a product anyway, might as well be like, Hey, can you give me a discount for everybody? So that's kind of a fun part to it.
25:42
And there's all of this going on, like you found a way to live with chronic illness, but also be creative with it, and make the work and your talents really meaningful. For you and for others. Yeah, what's the emotional process like on the days that you feel completely whacked and doubt still creeps in? You know, you don't have it all together? And none of us do. But how does it feel? Working with the idea that you don't have it all together as well?
26:18
Yeah, so there are a lot of thoughts that go through my mind. A lot of them relate to the legitimacy of my illness as well as you know, what's going to happen in the future? Am I going to get worse, am I gonna stay the same? are certain things gonna get better? Like with my gastro precice there's so much uncertainty and what I spend a while focusing on it some days, you know, it's a lot easier for my mind to start slipping into a scary space when thinking about the future. I allow myself to think those thoughts, but I also tried to take a step back and reflect and tell myself, you know, like, it is what it is, I'm doing okay, right now, and this is what I want to focus on. And maybe a few weeks later, I even say, hey, maybe I can make a video on what I was thinking about for last week for a few days, it was just on my mind, it was difficult for me to process. Maybe I should talk about it. So I think that honestly, YouTube plays kind of a little bit of a therapy role for me, too, it feels really nice to tell others and connect with others who have felt the same things. Yeah.
27:24
And friendships like in your personal life over this long period of time. You've made friends with other people through the internet and those conditions. But what has been your journey in your relationships with friends say from high school up until now? Yeah.
27:44
So there have been some friendships where chronic illness has not come in the way of at all. In some ways, it's
27:51
made,
27:51
you know, my relationship stronger, or it's assured me that I can really trust that person, I have a really good friend Renata, from all the way from elementary school. She's one of my best friends, we're so different, but she respects me and all the different things I need to do for my life. So well, I went to her concert before COVID. And onstage she like comes down and whispers right people are, do you need a chair, I have someone who can give you a chair. And I didn't, because it wasn't long anyway. But it's just so nice that she thought of those things for me. And so I have some really good friends like that. I also have some friends who don't care, truthfully don't care as much as I would like for them to. And there have also been friends who
28:37
I've lost
28:38
because of my illness. And oftentimes it's because, you know, they just don't understand it at all. They think it's my fault. They think that you know, the things I can't attend, I have some you know, control, like over which I don't. And it's hard for me to, I think the best kind of friends are the ones who can understand that you need to cancel as hard for you as well. And to have sympathy over that, and no anger. And also the ones who are very, very willing to make accommodations. I know for example, I love going out to the club, for example, I can't do it for long, but I love going out with a friend who just wants to go out for an hour. And a friend who's so willing for me to be like, Hey, can we just scoot over to the chair section and I'll sit down and dance from the chair. Any friend that is cool with that is great.
29:27
And that
29:28
but like I said there are some friends of mine who I think are great friends in so many ways but who are not that great when it comes to my chronic illness. Sometimes that means I want to end that relationship and other times that means I actually get more of a benefit out of the relationship just by being their friend and just not really bringing up that side of my life. Too much controversial but in the end, I do think that that's actually best for me.
29:53
Yeah, I think this thing you've really hit on no matter where you are in terms of age or what your condition is. There were a number of years, and it still happens. But there were a number of years where everybody was getting married in my circle, and I could not hop on a flight, and go to the wedding, Australia is a very big country and you visited it. So it takes time to actually you have to fly somewhere. And that was super hard. But friendships ended over the fact that I had to phone and say, Actually, I'm really sorry, but I just don't have permission from my clinicians to fly. And I know that this is super important to you. But I actually can't be there. And I found this, for me, was more accommodated by my women friends than some of my male friends. And I think the reason was that, certainly men have smaller friendship groups. So when you're a woman who's friends with a man, that is a really big impact on them, when you're not available for the thing that they have asked you to be there for. And I'm wondering, have you found like, we're very different ends of the age spectrum, but have you found any differences between the men in your life and the women in your life?
31:20
That's such an interesting question. You know, I will say that most of my friends are women. So I don't think that my perspective is going to be that great. So I'm going to say no, I don't think so. And I also wonder if that's a generational thing. And if so, well, that'd be fantastic. Hopefully, that means that we're making a lot of progress. But it is really interesting to hear that.
31:46
Yeah, it's interesting to see people's reactions and what's important to them. And there are times where you come to that choice point of, I just don't have the emotional bandwidth to keep having discussions or feeling emotionally ashamed that I cannot do and meet the needs of my friend. And then I have to make a call here.
32:13
Yeah, yeah, 100 years, I've had been through that a few different times, it's so hard. I think that everybody with their chronic illness has probably gone through it at least once. I also think that going through it you, I've learned about myself, I've learned boundaries a lot better because of that. And I've also, I've learned how to better be there for a friend in ways that don't take as much energy or in ways that let them know I'm there for you. Right now. I'm also going through something or I'm not feeling the best, I want to know I'm there for you. And can we check in on this date, or maybe just you know, on a day where you're feeling really good, quickly check in on them. I just like to assure my friends that I'm there for them. And I think that also helps me get through it when I feel like I'm a bad friend, which I'm not and I shouldn't be made to feel that way. But sometimes I am made to feel that way. But it makes me feel better when I know that I've checked in on them and let them know that I'm there for them during the times where I feel a bit better.
33:16
And through all of this process, what do you think you have developed personally through living with chronic illness, either in your relationship with yourself and with others? Yeah.
33:31
A few different things, I've definitely gained a lot of compassion. I think that's a very common thing. Go here, among people who've dealt with chronic health issues. You really learn how to think about what somebody is going through and how that might influence their actions. It makes me want to listen really does. And I feel very comfortable now talking to people who are going through difficult circumstances, even if it's nothing to do with chronic illness just because I've had those conversations about myself and with others about their journey. So it's made me pretty empathetic but in a healthy way. I don't get as you know, I don't get exhausted talking about it in the same way that it used to. It doesn't scare me. Something else I think that's important to talk about that I've gained over the years dealing with illness is like so much respect for my body. And I think that it's an interesting thing to talk about because I think that is a huge concept that has many different sides to it. But what I'm I guess referring to is I I almost separate myself and my body. And I don't I don't know why but I'm pretty sure it's influenced by the way you know, by my chronic illness, and I want to do something my body doesn't. I want to do that thing really badly. But I say you know what, I'm going to protect you and I'm not going to do it and you Feels like a loving relationship that I have with my body that I've gained over time, as opposed to this hatred that it is doing this to me, I don't think that I think it's trying its hardest. And I need to try my hardest to be there for it as well. So for example, like, let me think I could, I don't know, I'm trying to think of a good example. Maybe for just eating healthier, for example, I have a huge sweet tooth. Huge really do. So yeah, like, maybe I won't have you know, let me try to eat candy four days a week instead of seven. Which, because my body deserves to, you know, have a bit better nutrition, even if it doesn't affect my energy levels, I know that my body like deserve something a little bit more nutritious. I feel like I owe it.
35:55
What about fatigue? Like, that's the place where I really come to it's like, Okay, look, fatigue is just part of the process, it means that I have so much energy, and there's all of that Spoon Theory that I only have so many spoons of energy to spend during the day. And it takes two spoons for me to get up and have a shower. And that leaves three spoons left of energy for the day. And for me, fatigue is something that I'll go one of two ways where I'll respect it, and I'll know how far I can push it. And then there are other days where our calculator go, okay, the consequences of doing this means I'm going to be in bed all of tomorrow. But I'm gonna do this because it's important for my sense of emotional, and just whole identity sense of well being, I really want to do it, but I'm calculating the price.
36:51
Totally. And I think that comes down to that. It's like I have a relationship with my body. And sometimes, you know, I'll say, you know, you're right, I'm not going to do that. I'll do that for you. You know, I'm the stay back, or I'm going to shorten it. You know, I said I was gonna go do this for an hour. Hey, we've 20 minutes earlier, I got you. And sometimes that means my body, you know, yeah, I'm going to sacrifice, you know, maybe tomorrow's like, maybe tomorrow would not have been a high pain day. But I say, you know, I'm going to do this. Yes, I'm going to feel fatigued tonight and tomorrow. But I think that's okay, because I have this respect for my body. That makes me feel okay. And I don't feel guilty. I used to feel guilty. When I did the, I felt this guilt towards my body. Like, I'm so sorry, I did this to you. I don't really anymore. Because I've like developed a relationship, I'm sure to anybody who doesn't have a chronic illness. This might sound very foreign and kind of weird. But it's the way that I think about it. And I think it's the way that's really helped me.
37:48
I think this is amazing is a it's certainly something I've probably intuitively done. But I have also treated my body badly at times. And I hadn't thought about it in this way. So I really want to in this moment say to you, that is super helpful. it lands in my heart. And it's a place in which I think, Okay, this is something I could work with. And I can see in you. Something that resonates me is you want to get great grades, and you want to get on with the life that you really know is in your heart. So where are you going? And what do you hope to do for yourself in your career.
38:35
So right now, I just applied to Master's programmes in human genetics and genetic counselling. At the moment, I'm just waiting to hear back from interviews, which is very exciting, but very scary. compositive that my journey going through chronic illness is what led me here. I don't know how else I could have possibly been brought to this career that really just seems so perfect for me. I know that I'm gonna be taking some of the research I used to do
39:03
with
39:04
Ehlers danlos Syndrome, and I still do it as well as a lot of the compassion that I've learned and this interest that I have in talking with people through YouTube and expressing my thoughts and, you know, having So, so many years being spent, not supported by doctors not given the proper accommodations. I'm very excited to pull from all of that and, you know, fill some of the gaps that I think were illuminated very clearly from my journey and fill some of them as a genetic counsellor.
39:38
And what you've done is find a way to clearly communicate, and we can't underestimate like communication, in the friendships in the doctor relationship in the family relationship, finding a way to make the complex clear, and a way to say what our symptoms are in a way that can be heard. I mean, this is essential for having a more holistic and better relationship, not just with ourselves but with others. Yeah, this is what you've done, you have worked at being a clear communicator, and finding ways for the information to land in people.
40:20
Yeah, that's, I love I love hearing that, that makes me so happy. And I also love the way that you're saying that I think that I completely agree, I love that.
40:31
It's really quite something to learn very early. And I have no doubt that it will serve you as a life skill. Is there anything else you would like us to share with our listeners, or that's important for you that you want us to all know?
40:52
I guess something that, like I needed to hear as, when I was younger is, you know, you're totally worthy of being able to do everything that you're able to do with any accommodation. That's not I think, sometimes, I used to stray away from accommodations, and I didn't even know that they existed. But that's something that I know would have changed my life for when I was younger. And I just wish I had heard that. I know that there are so many things that I can do, either in just a shorter amount of time, or in a different way that still keep me so happy that I can't really do if I were to do it for the full length or not take those accommodations, and it is totally it's great to use those accommodations and make accommodations for yourself and be active about it. It's fantastic. It's not giving in it's not cheating. It's It's fantastic. And you totally deserve it.
41:52
And I really love the way you found it. Like you went to the loop and you were like, Ooh, I'm gonna ask for a wheelchair, I'm not sure. And do you want to just share with us what that was like for you like this was a big call in your life.
42:05
That was so the video referring to that was the first time I ever used a wheelchair in a museum. I wanted to do so many things that day, and the lube and France is huge. And I didn't understand it was either I do the lube, walking, I'm out for the rest of the day. And tomorrow, I'm going to feel that pain as well. Or I say, you know what, I hear that they have wheelchairs there that you can rent. Let me just go ask for one. I was able to do so much more that day because I did that. And I'm so proud of myself for doing that. And since doing that I'd become way more comfortable doing that inside of you know, Target, for example, they have a Do you have target and Australia? Okay, I wasn't sure. You know, those motorised vehicles, those little carts, I can do so much more that day. And I even if I didn't have anything else to do, while I got through that grocery store trip without feeling nearly as many symptoms as I would have, if I didn't do that. And that's totally, that's so great.
43:02
Yeah, I'm so pleased to share that because I think it's something I wouldn't have necessarily thought of at times. And it is this very deep discussion between what is disability if one day, you're great. And the next day, you're in bed, this sort of dynamic approach to disability, when it's very conventionally we think of it as static, and structured and unmovable, and never to have recovery from. Yeah, completely. It's not like that at all. For so many people. It's very variable. And those misconceptions creep into the people who do have disabilities, and it affects the ways that we do what we want to do and the accommodations that we use, when other other situations, if we didn't have that influence, we would just be doing what makes the most sense for us. And unfortunately, you know, society doesn't, doesn't let ourselves think that that's okay. Yeah, I really want to thank you for sharing with us. You've shared a lot of your energy, a lot of your wisdom, and the real raw truth of your experience. We're gonna put in the show notes, all of the links to his socials where you can go check her out, I would highly recommend you spend some time with Izzy on YouTube. Because your heart will feel more open, your spirits will lift and you'll get some super practical advice. Thanks so much for sharing with us at Thank you so much. I absolutely loved interviewing Izzy and one of the reasons is I learned a lot from Izzy. She really showed me all the new ways in which I could come into a deeper relationship with acceptance and with my body Even now, and now you'll be able to join us live September 13 to 15 with our range of spoony panels, including talking about our stories with flick Manning, talking about how to be seen and heard with the beautiful host of an invisible podcast, Lauren Freeman, as well as Amanda Joe who runs a pay our company for women living with chronic illness. And that's just a few of our special guests. All the details are in our show notes, or just pop over to my Instagram at Michelle Irving official. You'll also be able to find easy calm blur at is a con blur on Instagram. Once again, all of those details will be in the show notes. I look forward to sharing more time with you next week. And thanks so much for subscribing. Feel free to review us and share this podcast. We want to reach as many women as we can so that we know that it's possible to experience chronic illness and be connected with community. Talk to you next week.
Transcribed by https://otter.ai
