Getting an Autism Diagnosis | Imogen Varle

In this months episode we are joined by Mental Health nurse Imogen Varle, who shares her experience of getting an Autism diagnosis and living with chronic illness. We explore the impact of a late diagnosis, the impact being autistic and chronically ill has on navigating work and life, and the importance of finding your tribe.

Learn more about Imy here: ⁠⁠linktr.ee/the_gratitude_gal

Please note this Podcast is provided for general information only, it does not constitute as medical or professional advice. The views expressed by guests on this Podcast are their own, their inclusion in this Podcast is not an endorsement.

Intro and outro audio by podcast.co.

[Image description: The image has a light cream background with the Disability Arts Online logo. To the right, bold black text reads “Accessibility in the Arts” with the guest organisation's name, “Disability Arts Online” written below[Image description: The image has a light cream background with a image of Imogen Varle smiling at the camera. To the right, bold black text reads “Getting an Autism Diagnosis” with the guests name, “Imogen Varle ” written below in soft teal. Under the text is a teal play button and a horizontal soundwave graphic. At the bottom, a circular logo shows a sky-and-trees scene with the words “Alive with Chronic Illness” around the edge.] in soft teal. Under the text is a teal play button and a horizontal soundwave graphic. At the bottom, a circular logo shows a sky-and-trees scene with the words “Alive with Chronic Illness” around the edge.]

Transcript

Elizabeth 

In today's episode, we're joined by Imogen Vile to talk about her experience of getting an autism diagnosis. Thank you so much for joining me today, Imy. I'd love to hear a little bit about you and your journey. 

Imy 

Thank you for inviting me. Well, my journey has been an interesting one, to say the least. So I suppose when I'm thinking about my chronic illness journey, You could even say sorry when I was born, but I didn't know until much, much later. I'm diagnosed with ASD and Ehlers-Danlos syndrome and also essential tremors, but that came much more recently. The big ones that impact me the most, obviously, are my autism and my ASD. So when thinking about my journey, with the ASD, I didn't get diagnosed until much later on in life. It wasn't until I was 28 where I got diagnosed. Unlike my, I've got full consent to say this, unlike my brother who got diagnosed with his neurodivergence when he was about eight. So huge difference. And I didn't start reflecting on, you know, what it meant to me and how it showed up in my life until I was much older. And a lot of that can be backed up by research of how women are diagnosed much later on. in life. So my story is quite similar in that regard. When I think of my physical health journey, that's been a wild ride. And obviously so much research indicates that overlap between ASC and physical health comorbidities, particularly Ehlers-Danlos syndrome. It's fascinating if you're bored and have five minutes and want to look into it, or the research around how the brain is obviously completely different with neurodivergence and how that overlaps with Ehlers-Danlos. But so how my physical health started was that I joined my new workplace and it was almost as if my body waited until I was in a stable, calm environment to flare up everything that had been underlining for years that in retrospect, you can look back and be like, how did I not notice this sooner? Or how was I not tested? Because For me, Ellis-Danlos runs massively in my family. I have multiple family members with particularly hypermobile Ellis-Danlos. And it was just that when I went from a very sort of physically active job of being that senior nurse on ward running around all the time on my feet to quite sedatory and office based, my body was like, okay, you're relaxed now. Here's all your problems because you're now safe enough to deal with it. So What happened was in 2022, I had what I like to call my big flare up. And that was, I ended up having my second acute kidney infection of the month. I had a slip disc and I had a popped, or I can never pronounce, so I popped ulcer basically all at the same time. It was excruciating. And I was in hospital for about two weeks and it was then that they rushed forward all these assessments I've been having. So like, this is not, I don't like this term, but not normal. Like this is quite excessive. And then obviously it all come to light and they were like, this makes so much sense. 

Elizabeth 

Yeah, I think it does happen like that, doesn't it? Unfortunately, sometimes when you've been waiting for things to be done and then things rapidly deteriorate and then the upside is you get the test. But really, if you'd have had them sooner, maybe you could have then avoided that deterioration. 

Imy 

Yeah, precisely. I think it's actually something I talk about in my book in relation to the ASD diagnosis, but it does also link to the physical health side too, is that you go through a bit of a grieving process for the life you could have had if you'd known much sooner. Because it, like I said, it's unfortunate that it has to get to that point of escalation where things are taken seriously and it really shouldn't be like that, should it? 

Elizabeth 

No, and it often is the case, isn't it, that we get to a crisis point almost, and in some situations, a crisis point, before the actually start to happen. And I know you said there that you had to wait till 28 to be diagnosed, whereas your brother was diagnosed at 8. And I wonder from your perspective, how do you feel like your journeys have been different? Do you think him having that earlier diagnosis was a positive thing? 

Imy 

Yeah, for sure. I think my brother having had that early diagnosis, excelled with the support that he then got because of it. And I'm so proud of him now. I know that sounds very, very cliche, but like he's achieved so much. He's amazing. And you can really see that because of that early diagnosis, he was guided and molded in a way that fit his brain and fit his needs. Whereas for me, I've always kind of had to mask and just know I was maybe a little bit different from everybody else, but not have a word for it or a label and just have to tweak my world to fit theirs almost. I say it quite a lot when I'm talking on like Instagram and stuff. It's being neurodivergent in a neurotypical world I had to mould to fit their normal and I really did not succeed for most of it throughout my whole school life. It wasn't until I hit university that I actually flourished and I think we all joke about it on retrospect it's because a lot of my friends are also neurodivergent birds of a feather flock together and all that and yeah that's when I finally felt like I could really sort of let go a bit. 

Elizabeth 

Yeah because you had people around you who understood you and I guess it was well that you could relate to. 

Imy 

Yeah precisely it's and obviously even back then I didn't know I was autistic or didn't know I had like the health conditions I have now. A lot of it was still just oh it's just Imy. It's just Imy and her quirks and that was just loved and appreciated because all my friends were just who they were with their own little quirks. But yeah it's on retrospect now more and more it was a recognizing and have been diagnosed. And we're like, oh, this makes sense. 

Elizabeth 

It finally all comes together and you can sort of see that pattern. Yeah. And I think that's nice, isn't it? Because I think sometimes people feel like they're loved despite their quirks. But I think a lot of times we love people because of them. 

Imy 

Very, very true. It's and the thing is, it's so important. Like when I actually did get diagnosed as autistic, it was so lovely because I remember my assessor. She was really, really sweet. And she said to me, Imogen, I want you to remember that you've got a great personality. You're hilarious. Please don't change. And I was like, that's so lovely. I didn't have to say that at the end of my assessment. It was just like, oh, that's really sweet. 

Elizabeth 

Yeah, that is nice. So do you think that maybe there was an assumption that people might, after getting diagnosed, actually try to change elements of their personality? 

Imy 

Potentially. I mean, I suppose it leads back to that bigger question of masking, doesn't it? And a lot of research indicates that women mask significantly more than men. And some of that could be due to gender stereotypes, could just be again due to the late diagnosis and unintentionally having masked for many years, find it hard to take it off almost. But I wonder perhaps if she said that because obviously growing up, I was relentlessly bullied throughout high school. So it was maybe her way of saying like, look, Imogen, you're not weird. I mean, probably I am a little bit, but it's like you're not different to a point of you deserve to be treated how you did. Actually, you're neurodivergent. Your brain is literally wired differently and you deserve to embrace your personality and you'll find people that love you for the authentic you, not the mask. 

Elizabeth 

And I think that is powerful to remember that, because like you said, a lot of people do masks, particularly women, and you can kind of try and adapt yourself to what you think other people will want, because there's a fear, I think, sometimes that, will people accept me for who I am? And will I be able to find those connections, especially if you've had not been felt as welcome in the past as well. But I think there's a power in knowing that you will find your people, and you won't have to pretend to be anyone else, because they will accept you as you are. 

Imy 

A hundred percent. I mean, how do I word this? So I don't have to speak freely. I've had nothing but beauty since my diagnosis, because it's almost like I've given myself permission to be authentically myself. And because I'm putting that authentic energy into the universe, the universe has given it me back tenfold. And I cannot honestly, obviously, I suppose no one chooses to be diagnosed with like these conditions, be it in my LSD loss, my tremors, or my ASD. But by embracing it, I've made connections and friends that I never would've had if I hadn't been almost thrust into this life of being like, okay, I have a choice here. I can be sad and try and continue to mask and hide these traits and hide, you know, my struggles, what makes me me, or I can just lean into it and recognise this is me, and actually push for advocacy, push for these sort of conversations. And because of that, I've made lifelong friends, I've made work connections, everything's just kind of been lovely because I've just embraced it. 

Elizabeth 

That is a very powerful message. And I think it can be quite scary sometimes as well. I know certainly for me when I started doing this podcast, I thought I feel very vulnerable just like telling people about my life and my health conditions and speaking freely. But I realized that through that journey of speaking freely, not only does it mean that maybe it challenges the perceptions that other people have, disabled people, and maybe someone can look at me and see something that maybe they could do. Because I wish when I was a kid, I'd have to look up to more people and saw all these things that I could do rather than just wondering, am I going to, what kind of future am I going to have? But it's also allowed so many connections. And like our conversation today, we probably wouldn't be having this. We wouldn't be. Literally. 

Imy 

Literally, like, it's, yeah, we're not underplaying how hard it is to struggle with the conditions we have. What we're saying is actually, there's beauty in the connections you can find when you recognise, let me find my community. Let me find my people because they exist. 

Elizabeth 

Yeah, and I think there's so much compassion within the community as well. And I've always found that there's just so many people that I have a connection with really quickly. And I think maybe there's a lot of really difficult things about having a chronic illness or disability. But my favorite thing is being part of this community and being part of such a group of empathetic and loving people. And I feel like it's a very special thing to be part of, a very beautiful thing to be part of. And it's difficult to really put it into words, what it's like and maybe people who don't have that to understand, but I just feel like you can be taken into so many different situations and you're just met with such warmth and love and acceptance. And I haven't really felt that anywhere really to the same level as I have within the community. So yeah, I think it is something, it's an upside. I think we all understand how hard it is. And we're all there to support each other in our difficult times and to celebrate in the good times as well. I think it's a very empowering thing to be part of. 

Imy 

I don't think I could have said that better exactly. It's that word, isn't it? Empowerment of. We've been given these cards that we've been dealt. What can we do with them to live the best life we can? And if we want to, because obviously not everybody wants to, what can we do to also help empower others? show people like that. That's one of the reasons why I started the gratitude gal, my blog, because it's I want to show people that despite obviously the realities of chronic illness, it's so important to find little things to be grateful for every day, because actually in chronic illness, every day could be so different. So actually, if one day I am just happy for a monster and a really nice meal deal, that's what I'm happy for that day. And that's valid. 

Elizabeth 

Yeah, absolutely. And it's finding those little things, isn't it? And little joys look different every single day. But yeah, I think it's important to, I think gratitude is really important and to be appreciative of the life that we have. And because we are still alive, we're still living a life, even if it looks different to what we might have expected or what society might expect for us, it's still just as good and it's just as valid. 

Imy 

Exactly. Like if I was to think back to when I was, I don't know, even in my A-levels, like, I don't know if I'd believe me, even if future me went and talked to me and said, Hey, by the way, things are going to get really hard. You're going to get this, this, this, but it's going to open up so much beauty. You're going to find amazing conversational opportunities. You're going to find job opportunities, places for advocacy, places for talks. You're going to write books like it. I'd be like, no way. No, it what I'd be so shocked. But yeah, it's a really lovely thing to reflect on, even if it's painful at points. 

Elizabeth 

Yeah, I think that's like what you said there was very powerful, all the things that you have achieved and how much they tie in and the opportunities that you've got that you might not have had otherwise. 

Imy 

Precisely. 

Elizabeth 

So yeah, that's definitely the beauty, isn't it? And one of those, well, one of those opportunities is that you also, you are a writer. So did you want to have a talk about some, about your two books? 

Imy 

Yeah, fabulous. Quiz me, queen. Feel free to ask anything you want or I can let rip myself as well. 

Elizabeth 

When did you first start writing? 

Imy 

So writing's always been a passion of mine, and ever since I was a little kid, I loved to write. I remember in school, I was published as part of like a talented poets group that my school was running, and it was only a silly little poem of a kid, but that was, it got me so excited. And it was... I almost rewriting as my first big girl hyper fixation with the ASD, but obviously didn't know it at the time. But now I reflect back on my, yeah, that's totally what it is. And it's just stuck with me. And I'm very thankful for that. I then, my next big memory of writing was that in my school, I had a homework project to write a story. And I kind of went a little bit over the top, I wrote a horror trilogy rather than a story. And my teacher loved it that much. She made me stand in front of the class and read one of the like chapters out and that felt really incredibly rewarding. Don't get me wrong, I did have the other side of the spectrum because it was at that point I thought, no, I want to do this when I was younger. Obviously it was always an additional dream to me wanting to help others and work in the mental health field like I do, but it was still a dream that I had and I remember a conversation with my head of year in one of my scores where he said, well, writing is really hard, Imogen. It's really hard to get into and set your expectations realistically. I thought that's a bit harsh, bit brutal. But yeah, coming on to now to reflect on the fact that I have, you know, published two books and got two in the works, and I write for an incredible magazine that's written by and for you know, neurodivergent and disabled people, it, it really makes my heart swell. As cringy as that might sound, it just fills me with so much like joy. And it's like, wow, I'd literally me would be beaming at Big Amy at this point. 

Elizabeth 

Yeah, I love that. And yeah, I love that you had the confidence to read it out in front of your whole class. I feel like I'd be shaking. 

Imy 

You know what? Oddly I. I'd love to know where this came from. I've never been too nervous having conversations or doing things like talking in front of others if it's something I'm passionate about. If it's not, it will feel like nails down a chalkboard or like every word is coming out via a mouth full of marshmallows. It will feel horrible, but if it's something I'm like, I'm really proud of this and I know about this and I've done this, then I actually feel quite confident. 

Elizabeth 

Yeah, I think that makes sense because when it's something you're passionate about, you've got that passion that's fueling you. So it's almost like that excitement kind of takes over the nervousness. So you feel the excitement more. Whereas if it's something that you're a little bit like maybe like unsure of and not as confident with, yeah, I can definitely see that. Yeah. 

Imy 

Precisely. 

Elizabeth 

So should we have a little chat about Through Different Eyes? Was the title something that you came up with straight away when you were planning out the book or was it something that came through the process? 

Imy 

So the title came through the process. I played around with a couple of titles and it kind of just came to me one day because I thought, I truly am looking at myself through a different lens now. I'm looking at the world through the eyes of a woman that's freshly diagnosed as autistic. And it does look different because you start to see so much just makes sense and you start to look through things of a lens of, well, actually, I'm not just being picky or I'm not just being odd and finding that smell overwhelming or that noise infuriating. It's actually, I'm looking at things through the lens of neurodiversity and I can't help it. It's just me and it's, you know, if I could control it, I would, but I can't. So yeah, it came via the writing process and when I thought of it, I just thought it just makes so much sense. 

Elizabeth 

That definitely makes sense. And I think, I love the way that we're looking at things and we're saying different now. I feel like we're moving away from, and I know it's still present in some situations, but thinking of people as being deficient and instead thinking of them as just being, as being different. I think that's such a positive move when we don't sort of, because it almost, when we say that somebody is, or see someone as deficient, it puts a kind of, it kind of impacts the way that we see the value of that person, as if somebody would have a different value just because or that as if they would be deficient because they're different. And the idea that there is this normal and then some people don't fit in the normal, I think we are starting to move away from even thinking, because what is normal? I don't even, I wouldn't even know, like what is normal? Somebody tell me. 

Imy 

Literally, precisely. It's, yeah, it's so hard, isn't it? Because I think that was such a fear for me. And I talk about it in my book of how obviously a lot of that when we look at research, there's not many autistic people actually in the workplace in comparison to non-disabled people. And there's that big fear of disclosure for fear of being judged for being, like I said, deficient or not as good just 'cause you're autistic when actually, and I love this and I say it in some of my talks, but like Hewitt Hackard, I believe HP and another really big tech company, I think it was Microsoft. They did research on neurodivergent employment initiatives and basically found that by hiring more neurodivergent staff, people with ADHD and ASD, because often if you're going into that field, it's a hyper focus. Their productivity shot up. There was more creative ways to deal with things and actually their output was like much more than they ever anticipated. And I think that's such a good thing to focus on because actually if you. I suppose going back to the title, you're just looking at things through different eyes with an autistic mind. Like mine, I just look at things differently and think, how can I do it in this way? It might be different to what my colleagues are doing, but actually if I do it successfully, it's still great. 

Elizabeth 

Yeah, definitely. I think that's, yeah, that is really interesting. And it is, it's that different, it's equal, isn't it? It doesn't mean there's anything wrong with it. And actually those different ways of approaching things and I think I find this a lot as I support autistic students, and there's so many really interesting ways that they approach essay questions and different ways of structuring their research and different ways of things. And it's sort of helping people to feel empowered by that difference and see that the fact that you do it like this is not a bad thing. This is really interesting. What you're bringing to the table is really thought-provoking. It's looking at the question in an entirely new light. And I don't think that should ever be seen as a bad thing, but maybe because we're in a society where that is often perceived negatively, especially maybe you've gone through school, and actually being different has been seen as something really bad, you can learn to believe that ways that you approach things that don't meet the normative is actually a bad thing. And not that actually it's a really brilliant innovative thing, which might lead you down different pathways that you wouldn't have been and other people wouldn't have even thought of, which, yeah, I think it's incredible. And I think it always confuses me how, as a society, we can view something so just literally a difference, such a negative thing, just because somebody doesn't think about it. Like, surely thinking about something in a different way is a good thing. That's what I think. I mean, but then I do think differently, so maybe I'm biased. 

Imy 

Feel that same. It's okay to be biased. We think differently, but it creates beautiful new ways of thinking. So we add to the discussion rather than take away. 

Elizabeth 

Yeah, I love that. That's, yeah, very, very true. So when it came to sort of the process of writing the book, what was that like for you? Did you have an idea of what kind of structure you wanted or how you wanted it to look, or did it evolve? 

Imy 

So I was very structured with writing the book. I, whenever I'm going to write a book, I get a brand new notepad and I dedicate that to the book. And I literally make full plans of what I want to kind of include in every chapter. I'll make a storyline. I'll talk to all the appropriate people I need to and collect notes. Because obviously sometimes memory is brilliant, but sometimes it cannot best serve us. So it's always It's always good to check in definitely on important talking points. So yeah, I was extremely structured with it. I made a thorough plan of, okay, I know this is the message I want to get across. And that message was, what did I want when I was going through my ASD diagnosis? There was loads of conversations and talk about what it meant to be as autistic as a woman, but I couldn't find much about what it actually looked like going through the process from A to B to C to D etc so I thought that's what's missing here and I really want to add to it while also being informative but also talking about my own experience so I was very planned very organized I even dedicated little writing days to myself I'd be like okay this day every week I'm gonna after work I'm going to work on it and this Saturday I'm not going to see anyone I'm going to write my book obviously I embodied things like pacing and spoon series throughout that so I wouldn't just sit and write continually for like nine hours a day I'd break it up I'd be like okay I'm going to write for an hour then I'm going to play on my Nintendo switch then I'm going to write for an hour then I'm going to read a non-fiction book so I can completely tell my head off for a bit then I write for another hour but yeah it was it was very regimented is that the word regimented I had a plan and I still basically. 

Elizabeth 

Yeah, that's good. To have an idea of how you work best and that planning and having that really fixed structure helps you be creative. Because I suppose in that way, you knew when those times were coming up. So you knew when you could kind of add things to it. And you might be thinking about in the back of your mind, oh, I want to add that. And you know that time's there and protective you to get those words on paper. So I take it you enjoyed the process of writing? 

Imy 

I loved it. was really The term that's coming to my head is beautiful to see something start as simply an idea and see it take shape and become what it is now, which is a book that's helping so many other women and men, to be fair, because I've had male colleagues, for instance, read it because they were wanting to know more about my journey, but also ASD in general, just helping the community is just so fulfilling and Even on the days where I thought, I've got no energy for this, even just writing a little bit, you still wrote something that day. And it was just really beautiful. And seeing it as a while ago from the first draft to the second draft to, okay, I'm going to send this to my beta readers now. seeing that slowly progress was just amazing. It's so fulfilling because you're like, oh, I'm definitely after the beta reader phase, you're like, oh, this is real now. This is ready to go. After you've done them edits, you're like, our only person stopping me now is me. I just need to get it out there. And it's like, it's very, very exciting, very enjoyable journey. 

Elizabeth 

Yeah, it sounds brilliant. Was it a bit nerve-wracking when you got to that stage when you were getting ready to publish? 

Imy 

Yeah, I think it's always, there's always an element of I like the term you use, vulnerability in publishing something that's about your own life. It requires a level of openness and transparency because I think definitely when there's elements of memoir in it that your reader can tell if you're not being genuine normally. Do you know what I mean? Like there's no point mincing words too much or almost going back to masking. No point masking in my own book about myself and my journey and how to help others go through it. because then the reader won't connect with it. So when it was time to publish, I was that part of me that was like, oh, this is real now. It's, I've set this date, it's going live, it's going to be out there for the world. But then there was more excitement and joy than fear because I was sat there going, this could, even if it really just helped one person go through their journey, that was enough. 

Elizabeth 

Yeah, and I think that's what you said that, I'm sure you've helped more than one person with their journey. And I think that's a good motivation, isn't it, when you've got that anxiety to think this is going to do so much good for other people as well. And I think that helps me when I'm feeling anxious about something, particularly if I've been quite vulnerable, thinking if one person gains from this, then the vulnerability is worth it, even when it's difficult, because I've often myself, I feel like I've benefited from other people's vulnerability, because going from my journey, I love to listen to what other people are saying and read different things that people share. And then those vulnerable posts, those ones where you talk about things that maybe you're anxious to share. And like, definitely, I've been there. But talking about them takes away the stigma and helps to normalise things. So you feel less alone because you think, oh, I'm not the only one who's experienced this. This person has as well. And they've been okay. And I'm going to be okay, too. 

Imy 

Precisely. It's almost giving back hope, isn't it, when things can feel hopeless. particularly in the early days like I said when you might be going through that grieving process of no what could have my life been like before or no I'm not autistic surely not and then it all just starts to click and you're like oh okay and then the more you look into it you're like oh actually it's actually like I said I'm not alone in this it's I won't be the first and I most definitely won't be the last so it's going back to that community isn't it you you really do find your tribe once you start to, I don't want to say embrace, but almost empower yourself to recognise I can do this despite and I will thrive no matter what. 

Elizabeth 

Yeah, I think that is a really powerful message. So with this book compared to your earlier one, so you also wrote Dear Little Lost One, I know this was your first book. So what was the process like? Was it similar? You wanted to go for a structure with that one as well. 

Imy 

Yeah, it was very similar. It So I wrote that when I actually worked on wards and published it once I'd moved to be out of wards. But it was very similar in that I had a clear plan that I followed and I did stick to it, pretty regimated. Suppose that is my ASD. But I would try and find little, because it was shift work I was doing for the predominant period of writing that book. It was a little harder to be as planned, if you will, because obviously my shifts could change every week I might be on. nights one week and then day is the next and early is the next. So I had to be a little bit more flexible. But it's almost like I planned for knowing there might not be a plan with it. I planned for knowing I'd have to be more flexible. But yeah, the writing process, I would say, was probably a little. The time that comes to my head is almost a little harder, just because it was a very sensitive area, because it was about all my life leading up to choosing to study nursing and what made me want to work in mental health. And obviously I always used to say it on wards and I say it now that no one usually wakes up one day and goes, I want to work in psychiatry. It usually comes from either having had experiences of mental health struggles yourself or having known someone that does. And obviously having to go back to the very raw emotional times is quite hard. I had to have a few more breaks writing that one because that one is purely memoir, whereas the Three Different Eyes has over 100 references to back up what I'm saying. But my first one, because it's purely memoir about everything I went through, it was quite hard and it led to some quite interesting conversations as well, because again, things were fact checked, so I had to checking with my mum, checking with my dad at points, but look, is this accurate? Did this happen? Am I remembering this accurately? And more often than not, I was, but then more often than not, they'd add elements. So it was, it was definitely a more harrowing journey, if you will, because it wasn't as, I suppose, I don't know what the term is. It was more sensitive of topics, obviously linked to a lot of trauma and abuse and pain, but just as enjoyable and I suppose term gratifying, if you will, when it, got published because again, the message was similar in that, again, if I could help one of the women that had been through what I had to find a little bit of hope, then I've done my job. 

Elizabeth 

Yeah, and I can imagine that would be quite, like I said, very challenging from an emotional standpoint, all these things coming up and then also talking to your family about it. And did you find your family were really supportive during the writing process? 

Imy 

Yeah, believe it or not, like, I don't know why I said believe it or not, but because obviously it was quite upsetting for them at points 'cause there was some elements of my trauma that I hadn't necessarily spoken about with them. So for instance, I know that when it was published, my mum read it front to back and she's been nothing but incredibly supportive throughout both writing journeys, but she found it a really hard read and had to take time and get upset over it. I know my stepmum's read it front to back, but I know my dad hasn't yet. And that's purely just because he said it might be too painful at the moment. And I think that's valid. But overall, yeah, they were incredibly supportive and they've done nothing but sort of, I don't want to say promote if that's not the right word, but they've embraced my writing journeys. I've known I'm passionate about writing and they're just so proud of me. And that is clear through all their communications. 

Elizabeth 

Yeah, that is lovely. That's lovely to have. And then to have them to check in with why you were writing it and say like, is this how I remembered it? I think that's really beautiful that they were there with you for that journey as well. 

Imy 

Quite blessed in that way. 

Elizabeth 

Yeah, and you spoke a little bit about your work as a mental health nurse working on the wards. And I was interested to find like, how did you find shift work in terms of like this, the different times you wouldn't really had much consistency. Did that have an impact on your symptoms and make it difficult to pace? 

Imy 

Definitely. And. I say that now with the knowledge and hindsight that I have. As that saying goes, hindsight is a beautiful thing. So at the time, on reflection, there was many times that I probably was in autistic burnout or sensory overwhelm and didn't click on and didn't realise because obviously I hadn't been diagnosed at that stage. But particularly with the shift work and working in psychiatry, it's It can be really hard 'cause ward dynamics can change quite rapidly depending on admissions, discharges, what the ward dynamic is at the time. And then the thing is with working in mental health wards, kind of no matter what level, be it acute, be it psychiatric intensive care, et cetera, you have something called like a pit alarm or we did where I worked, which it would have two very loud alarms. One would indicate this is an emergency, but I think we can manage it on board. And that would be intermittent allowed. And the other would just be nonstop allowed, saying this is an emergency. I need the whole hospital to respond to this. And if I'd had a particularly hard shift where we've had a lot of them, because it wasn't uncommon if people were really struggling to sometimes have six or seven incidents in a day, if it was really difficult, I mean. You know, you're managing 20 plus people on a ward and sometimes you can have that domino effective one person struggling and then the alarms might be sensory overwhelming for them. So that causes another person to struggle. And then if someone's accidentally seen someone struggling, that might cause them to struggle and etc., etc., the domino persists. But it was after shifts like that where I might feel really overwhelmed and really struggle to post, particularly if I'm in the next day. One example that comes to mind is when I worked in my PQ, a psychiatric intensive care ward, there was this doctor that was lovely, wonderful doctor, amazing doctor, cannot praise him enough. But I was complaining to him, not complaining, that probably doesn't feel like the right word, reflecting. I'd been put on just because of how things worked. three long day shifts back-to-back. And what that meant was seven till seven, three days in a row. But at that point, I wasn't learning to drive. I was reliant on buses or I was scooting to work on my electric scooter. And I think I'd had about 9 hours sleep over three days. And he was like, Imogen, go for a break. He was like, please go sit in the break room just for a minute and have a coffee. because I was feeling so drained. And that's where I think I struggled the most as well with the pacing, because sometimes you genuinely really couldn't, because sometimes if you had had a really busy shift, you might be on ward doing documentation even much later than your shift, because obviously, yes, it's 24-hour care, but if you've had something serious happen, you need to document it. And then you can't necessarily hand that over, particularly if you're off the next day or, you know, it was a really serious incident. You need to make sure it's on their notes. And then if, so just as an example, let's say you're on that seven till seven, you might not finish till 10 and then it takes an hour to get home. That's 11, you've still not eaten, so you have a small bite to eat. Then you're in bed by about 10, not 10, sorry, 12, and then you might be up at five to travel to work the next day. It wasn't sustainable and I realise that now for my autistic brain and my physical illness, but obviously I didn't know I had it at the time. So retrospect is a wonderful thing. 

Elizabeth 

Yeah, definitely. And I can, it's very challenging. I think we don't often appreciate how long the hours are because I think a lot of people are aware that nurses and people working in hospitals often do 12 hour shifts, but I don't think they always know that there's extra on the end of that and that you might be there even longer than those 12 hours, particularly because there are staffing issues and there's not often enough people and funding in those spaces. So you're working maybe with not all the resources you really need to be able to thrive in your role. And you're working really, really long hours in roles that are just so demanding because like you said, it's not always possible to get that break because you need to be there, hands on all of the time. And I can imagine that for a lot of people that must be, it must be a struggle for people who work in hospitals just across the board. It has to because it's a lot of to physically kind of put your body through. 

Imy 

Yeah, definitely. And yeah, I think it's like I said, it's a wider nursing issue, isn't it? It's a wider discussion around staffing levels and respecting and valuing the nursing and doctor force that we have because the NHS do incredible work. It's just very hard. And yeah, exactly. Like you said, some days you might not even get a break if you're busy and it's it's a juggle and I have mad, mad respect for anyone that stays in that field for, you know, many, many years because I did know nurses that We're almost nurse veterans that had worked in the wards for like 30, 40 years. I'm like, how? I love it, but how? So I've seen very strong boundaries and maybe not as many chronic illness conditions, but yes, lots of respect for them, but woo. 

Elizabeth 

Yeah, absolutely. Yeah, definitely. And how have you found that with the work that you do now, is it a lot more accessible to you? And when you thought about the work you would be doing, do you think about accessibility and whether it's going to work with your conditions? 

Imy 

Yeah, definitely. I'm extremely blessed with the work I do now. It provides a phenomenal work-life balance and that's partly why I've been able to embrace and write the books I have and do the things I'm doing because it allows for that flexibility more and it's a really beautiful role in that because we're not a statutory or NHS service, we're able to have sort of firmer boundaries around well, you know, it's almost after five, it's really hard for us to do much because it's, we're not equipped for that, if that makes sense. Whereas that sets a really healthy boundary as a worker to be like, I really want to support you, but I do finish now. Here's all the services you can get if you need them while we're not open, sort of thing. And for sure, I've definitely kind of, and Yeah, what I've said to myself is I would never particularly, obviously life happens, but I wouldn't particularly ever want to go back to like a full office position or a full on ward position, let's say, if I could avoid it because the beauty of hybrid working is that it really does allow for you to have them bad days, if you will. Like as a chronic illness early, like fatigue is a big part of my elder son loss and I know it for some people they're like, oh, it's only an added hour and a half in bed, but that added hour and a half can really make the difference to feeling up and ready to go versus maybe if you had a bad flare up of, let's say, insomnia the night before and you're having to work on a ward and wake up really early, it truly does add up in the long term. So yeah, I've kind of said to myself, no, I love the hybrid style because I get enough socialisation to not become a little hermit that I know I potentially could be if it was a fully remote role. But I also get the ability to rest and recharge while still helping people and doing something I love. 

Elizabeth 

Yeah, I think it is. When you find that balance that works for you, that's so important. And it is challenging in a lot of different roles. But having that flexibility, like you said, just that extra and a half in bed, it just can make such a huge difference. And I know for me, if I'm working from home, it's just so much easier on a bad day because I like the distraction from having a flower. If I'm well enough to still get things done, I'd like to try and do it just to distract myself. But being able to do that from the comfort of my sofa is quite nice and having that sort of flexibility and those options. Well, thank you so much for coming on to talk to me today. It's absolutely flown by. 

Imy 

It's flew. 

Elizabeth 

Before we finish. I was wondering if you had any advice for anyone who is considering going through the journey of getting diagnosed later on in life. Is there any advice that you would give them? 

Imy 

I suppose the advice I'd give someone looking to get diagnosed later in life is to remember that your journey is valid and self-diagnosis during the journey, particularly on online communities, is really accepted because For many, diagnosis is viewed as a gift rather than a given. And as grueling and long as the process can seem, definitely sometimes within, for instance, the NHS services, just due to the backlog, you could be waiting one to three years sometimes, it doesn't mean it's not worth it. And sometimes just having that answer can add so much validity to your struggles, your life, And it's about surrounding yourself with the right people that help you feel seen and heard during that waiting process. And just to remember that there is always things like the right to choose here in the UK with the NHS, and there's always the private route as well. But obviously that is so not accessible for many people with cost. But yeah, as a summary, the message would be it's worth it. You are valid whether you have a diagnosis or not. I know that people will love and respect you and you'll find your tribe. 

Elizabeth 

Thank you. Yeah, that's an amazing takeaway message. And thank you again for coming on today and sharing so openly with me. 

Imy 

You're more than welcome. Thank you for being a fabulous host and thank you for inviting me. 

Elizabeth 

This episode is dedicated to the memory of Amy Shaw. To learn more about Imy and her work, check out the links in the description. And as always, thanks for listening. 

Please note this transcript is automatically generated and many contain errors.