S5E4: Why We Just Want to Be Trusted: Narcolepsy, Careers, and Burnout

Liz is a speech and language therapist. Christine is a former chartered accountant. Both were diagnosed with narcolepsy type 1 — and both have had to fight, again and again, for accommodations they were legally entitled to.

In this episode, Liz and Christine sit down for an honest career chat: the university meeting where Liz was told she'd never qualify as a therapist, Christine being denied a split exam sitting and then set up to fail four exams in four days, the "breadcrumb" accommodations that never quite add up to equal footing, and the burnout that comes from constantly having to prove a disability is real. They close with why they're both now choosing to build careers on their own terms instead of waiting for workplaces to catch up.

Meet the Guests

 Liz is a sociable, creative and empathetic person who loves meeting new people and diving into their stories.  Her passion for advocating for others with needs or differences, and the skills she’s developed as a therapist, mean that she has many strengths as a narcolepsy advocate. She also has a lot of experience advocating for herself in the workplace. After meeting Kerly at a narcolepsy conference and being one of the first guests on the podcast, she quickly realized she’d love to be a cohost and get more involved in the narcolepsy community. A year and a half later, Liz has interviewed many guests on the podcast and has really benefited from meeting a variety of people with narcolepsy- feeling supported and less alone. Liz is excited to see where the future takes her and to continue on her advocacy journey.

Christine is a passionate narcolepsy advocate dedicated to raising awareness, supporting early diagnosis, and helping others feel less alone in their journey. After navigating her own path to understanding life with narcolepsy, she began sharing her experiences through her blog and creative projects, aiming to bridge the gap between medical facts and real-life experiences. With a warm, open style, Christine uses her platforms — including her vlog series and written resources — to demystify narcolepsy, highlight its impact on daily life, and inspire others to seek answers when something feels “off.” She believes that sharing honest stories can spark understanding, reduce stigma, and lead to faster, more accurate diagnoses. When she’s not advocating, Christine enjoys creating calming stationery, exploring nature, and finding beauty in the small, quiet moments of life.

Chapters
00:00
Welcome to the Podcast
01:06
Career Impact Overview
01:21
Liz's Diagnosis and Starting University
02:31
University Discrimination Story
04:28
Fighting for Adjustments
07:02
Knowing Your Rights
09:13
Christine's Uni and Exam Barriers
11:52
Workplace Culture and Buzzwords
15:09
Christine's Career Pivot Research
17:51
Liz's First Job and Napping Setup
21:55
Exam Accommodations and Fairness
27:01
Later Jobs, Burnout, and Managers
30:13
Workplace Scrutiny and Anxiety
32:19
Managing Symptoms at Work
33:46
Motivation, Naps, and Mindset
35:34
Job Search and Self-Employment
38:41
Why Diagnosis Fails So Many
40:02
Quitting the London Job
45:22
Burnout to Flexibility
53:10
Trust and Adjustments
57:32
Resources and Sign-Off
Resources Mentioned

Calibre Disability Leadership Course (NHS) · Go Succeed · Invest NI · Catalyst (Northern Ireland business hubs) · The Equality Act

Links

Website & support group: www.napsforlife.com
Share your story: narcolepsynavigators@gmail.com

Transcript

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S5E4: Why We Just Want to Be Trusted: Narcolepsy, Careers, and Burnout

[00:00:00] 

Welcome to the Podcast

Hello, welcome. You're listening to season Five of Narcolepsy Navigators, brought to you by Naps For Life CIC. Narcolepsy Navigators is a podcast for raising awareness of these fascinating illnesses through a deep dive into the lives and individuals living with narcolepsy, idiopathic hypersomnia, and Kleine-Levin Syndrome.

I'm Kerly Bwoga, the founder of Naps For Life CIC, and welcome to our stories

[00:00:42] Liz: Welcome to Narcolepsy Navigators. My name is Liz, and I'm co-hosting today with Christine, and I have narcolepsy type 1.

[00:00:53] Christine: Hi, I'm Christine, and I also have narcolepsy type 1. 

Career Impact Overview

[00:01:06] Christine: And today we thought we [00:01:00] would talk about the impact of narcolepsy on our careers. . If you wanna, Liz, outline, what your background is and where you've kind of started.

[00:01:14] Liz: Yeah, sure. 

Liz Diagnosis and Uni Start

[00:01:21] Liz: So I'm an allied health professional, so a speech and language therapist. I was diagnosed in, 2013 with narcolepsy just before I went to uni to study this course for my, , career.

[00:01:30] Liz: And yeah, it's had quite a profound impact on my career in some ways, and in other ways, um, it hasn't. So it would be really interesting to kind of think about the similarities and differences. How about for you, Christine?

[00:01:48] Christine: Yeah. So I was diagnosed with narcolepsy 2017, but I was finished university, and I was in a post-graduate job, , in a chartered accountancy [00:02:00] training contract.

[00:02:01] Christine: It had quite an impact because I, I think I had a lot of... I had work and studying for the exams, so I couldn't ignore any symptoms. It was all kind of, you know, "I need to get it sorted."

[00:02:14] Christine: So for you, you were in university or it was before university you were diagnosed?

[00:02:20] Liz: Yeah, so I was literally diagnosed the week before I went to university.

[00:02:26] Christine: Were they able to give you any accommodations or...?

[00:02:29] Liz: They were pretty bad, actually. 

University Discrimination Story

[00:02:31] Liz: Yeah, it was, um... I had quite a shocking experience where within... I got partway through my first year, I was passing all my placements, I was passing my exams, and then it took a while for them to kind of process my diagnosis, maybe because of the paperwork or whatever.

[00:02:49] Liz: And then I had a meeting with the university, um, and my course leads, and they basically [00:03:00] said in the meeting... I thought it was a meeting to kind of talk about my reasonable adjustments and how they could support me, but they just turned around in the meeting without any discussion about that, and they were like, "Yeah, so we don't think we're gonna support you on the course."

[00:03:14] Liz: Um, and then I got really upset in the meeting 'cause it was such a shock, and obviously I was 18, and it was my first time away from home. Um, and so I said to my, uh... There was someone there who was meant to be, like, an advocate for me from my course, uh, one of the course leads, and I said, like, "Can I go outside?"

[00:03:32] Liz: 'Cause I was really upset. Um, and then I went to the other course lead after the meeting to complain about how the meeting had been conducted, and she basically just lay into me and was like You know, you were so immature and naive and, like, it's so unprofessional to start crying in a meeting, and now I'm questioning your ability to be a speech therapist even more.

[00:03:59] Liz: [00:04:00] Um-

[00:04:00] Christine: You were only 18. You only started-

[00:04:02] Liz: I know. I know, and I wasn't even a year into having the disability diagnosis.

[00:04:08] Christine: That hurts my heart that they spoke to you like that.

[00:04:10] Liz: Yeah, it was, um, it was really bad actually. And yeah, she, she just ... It was just an awful approach from them.

[00:04:21] Liz: Um, and then eventually they did decide that I could stay on the course. 

Fighting for Adjustments

[00:04:28] Liz: Um, but I did ask for help around having a room to nap in, 'cause the university gave me a, a disability advisor. Um, and I had a room to nap in in a certain building in the first year, and then that building got, I think, either knocked down or changed into something else.

[00:04:45] Liz: Mm. And so I reached out to my course leads to say, like, "Is there somewhere in the building that I could nap in?" 'Cause there was, like, loads of little rooms at the top that would've been fine for me to stick a yoga mat on the floor and have a nap. Um, [00:05:00] and they were just like, "No," like, "We don't know the schedule of the building.

[00:05:04] Liz: That's kind of not our responsibility to sort." Um, I asked for them to support me with, like, disclosing my disability to placements, and they didn't do any of that either. Um, so yeah, I basically just felt the whole way through university that I couldn't, I couldn't ask for help, and I had to be better than everyone else.

[00:05:26] Liz: Um, 'cause one thing they said to me when they finally said like, "We're gonna keep you on the course," um, they said, "It's a good job that you're getting good grades." As in, like, if I was struggling in any way, they would've just got rid of me because I had a disability.

[00:05:44] Christine: That's straight up, like, disability discrimination.

[00:05:48] Liz: I know. What? It's so bad. And at the end of the four years, I went to a disability, um, an advocate from the, I guess there was, [00:06:00] like, a student union. Um, and the person said, like, "This is the worst case of disability discrimination I've heard of in the uni." And I went back to the, one of the course leads at the end of the four years, it was a different one by that point, to say, like, this is, this was my experience.

[00:06:19] Liz: And it took a lot of, like, guts and bravery to explain everything to her and basically, like, pour my heart out. And she turned around and she was like, "Oh, well, you know, are you sure that's actually what happened or was that just your perception?"

[00:06:41] Christine: , I can see how important it is to document everything?

[00:06:41] Liz: Yeah.

[00:06:41] Christine: . That's shocking gaslighting. I know. Like, so bad.

-

[00:06:46] Liz: Yeah ...

[00:06:47] Christine: that's so bad. Because you had the diagnosis as well, so they should have been jumping through hoops to get you accommodated

[00:06:59] Liz: Yeah, [00:07:00] I know.

[00:07:00] Liz: It's just, it went really wrong. 

Knowing Your Rights

[00:07:02] Liz: And obviously at the time I kind of thought like, oh, well, i- in some ways, like, is it my fault 'cause I have a disability and I just need to keep my head down and I just need to, like, do the work and not make a fuss? But looking back, it is really shocking. You know, with the information and the knowledge I have now about, you know, discrimination and the Equality Act, I'm like, gosh, they really messed up there.

[00:07:31] Liz: And they had no empathy either, which is really shocking for a healthcare degree.

[00:07:38] Christine: I know. That's, yeah, that is shocking because there is that sadness you have for your past self where you're like, if I had known b- back then. 'Cause I remember going to a narcolepsy conference in Manchester and they had said they had, like, a uni student, and they had basically laid out what their uni [00:08:00] did for them.

[00:08:01] Christine: And it was so lovely that they were getting that support. But I couldn't help but feel sad for m- myself struggling and not getting any help. Like, they were basically saying that you should, you know, have a place to nap, but if you're doing exams, they should give you, like, basically someone who's gonna be there, and if they have to be there for 12 hours and you stop the clock and nap, then so be it.

[00:08:27] Christine: Like, that's how they were doing their exams. And I was like, I was shook by this. I couldn't believe that, like, I couldn't even get, like, I think the most I got for my chartered accountancy was, like, 15 minutes extra, and, like, what's that doing for you? Nothing.

[00:08:43] Liz: Yeah. Yeah. It's wow.

[00:08:46] Christine: Yeah. You're, you're not gonna get much further. It's so important - to actually get diagnosed but also to, like, really push for, that help. But then back then, what, you're saying 2013? Mm. [00:09:00] Yeah. I, I, I think I was at uni to 2014. We must be similar ages. I was just thinking- I'm just about to turn 31.

[00:09:09] Christine: Okay. I'm turn- I, I'm 34, but then I took a year. Yeah. Okay. 

Christine Uni and Exam Barriers

[00:09:13] Christine: But I was like, I was at uni until 2014, and I think I w- in my last year I went to disability services and they basically said, "You don't have a diagnosis." So even though you have this letter from your consultant saying, "Please," like, I think it just said, you know, "Can you give her any accommodations, any help?

[00:09:35] Christine: We're investigating her for a sleep disorder." Didn't matter because my diagnosis wasn't fully in place. They just were like, "There's nothing we can do for you."

[00:09:45] Liz: Oh my gosh.

[00:09:46] Christine: So again, like, kinda like, "Good luck." Not even a discussion. I think it was maybe 10 minutes I was in there., And yeah, "There's nothing we can do."

[00:09:56] Christine: So it's, it's tough because [00:10:00] even then, whenever you have the diagnosis, it's like, are the accommodations correct or even in any way adequate? Like, that's another struggle. It's kinda like nearly feeling like, oh, I have to be grateful for like this breadcrumb- ... that you're giving me, even though it's, you know, it's no skin off their nose to give you-

[00:10:18] Christine: , Extra time or a separate room because... In those big university buildings, there's so many rooms that are sitting vacant.

[00:10:26] Liz: Yeah. Especially at lunch times when, you know, the school staff or the students are out and about themselves.

[00:10:34] Christine: Yeah. The situation as well, like, when I got diagnosed was that I was offered a meeting room which was half frosted glass, half clear.

[00:10:43] Liz: Oh, no

[00:10:44] Christine: , You could hear conference calls and things like, you know, it was very thin, these little meeting rooms, which weren't even proper rooms.

[00:10:51] Liz: Yeah.

[00:10:51] Christine: And I was like, "No, thank you." But then I didn't, like, demand anything better. Mm-hmm. I just kind of was like, "This place doesn't suit me.

[00:10:59] Christine: I'm [00:11:00] just gonna leave."

[00:11:01] Liz: Yeah.

[00:11:02] Christine: But when I look back, I'm like, you know, should you have had to leave because of that? Mm-hmm. Probably not. You know?

[00:11:07] Liz: Yeah, they should have just done better to find something that actually is suitable for you.

[00:11:12] Christine: Yeah. And it's like there's a real, um, you know, there's what's written in the law and the Disability Act and the Equality Act and things, but then what actually translates into practice-

[00:11:26] Liz: Mm-hmm

[00:11:27] Christine: is about 20 years behind. So it's, it's hard that way to kind of d- like, you don't, as you say, you were keeping your head down. Like, you don't wanna be like, oh, like, you know, you're not asking for anything crazy, but they make you feel like you're, asking for something additional or some special treatment.

[00:11:46] Christine: . And you're like, I'm just trying to have enough energy to do my job.

[00:11:51] Liz: Yeah. 

Workplace Culture and Buzzwords

[00:11:52] Liz: It's- That's so true, and I think that's what I have struggled with throughout my career because even though [00:12:00] I am proud of my career, and I have worked hard, and I'm getting better at advocating for myself, it is really tricky when the people that you're talking to are maybe not educated in how to support people with disabilities or even talk about disabilities.

[00:12:19] Liz: And the attitude from them is like, "Oh, well, this is a big ask," and, "Oh, it's such a burden." Even if they don't say those words, it's like the way they communicate. You can just tell it, they basically feel like it's a problem to fix, and like it's a big palava and, you know, kind of making you feel guilty for asking for reasonable adjustments or like you're doing something wrong or trying to just get one up on them and using it as an excuse.

[00:12:51] Liz: I've definitely had all of these attitudes coming- Yeah ... through from other people. Have you kind of had that as well?

[00:12:58] Christine: Yeah. Yeah. [00:13:00] Even like before I had to ever advocate for myself, the attitude that they have towards people with, like, disabilities as asking for something, like that's, that they shouldn't be getting.

[00:13:15] Christine: The attitude was kinda bad. , I've always felt that throughout even like school and uni, that, oh, people are just asking for extra time like for the craic- ... for fun. So it's, it's those attitudes that make you then reflect on yourself going, "Oh, I don't wanna be that person."

[00:13:29] Liz: Mm-hmm.

[00:13:29] Christine: "I don't wanna be like the person being dramatic." And those people aren't being dramatic, it's just that societal view is so entrenched in everything from like your university education to workplaces. It's really, like there's a real cultural problem, and even now they're kinda trying to be like, "Oh," like, "we're inclusive.

[00:13:53] Christine: We have a, , disabled and inclusion, , initiative." But it's a buzzword. , It's kinda lip service to [00:14:00] look like they're really doing a good job. But in the actual practice, they're still having those old school views, and they're just using it as a buzzword and, and all know, reality, they probably just want those neurodiverse types that are like geniuses.

[00:14:17] Liz: Mm-hmm. Yeah. Like they're- Who don't need any adjustments.

[00:14:21] Christine: They're like, "Oh, we could do with a Rain Man, actually. We're really needing that for statistics or something." But like they're not really wanting to accommodate and like there's probably so many, , people just sitting in the job, but they aren't productive.

[00:14:37] Christine: I think that we are very conscious of, , the impact on our concentration and productivity. Mm-hmm. Whereas there's probably people just sailing along, and they are in their seat physically, but they're not actually contributing anything meaningful. But then when we try and be like, "We just wanna be 100%," and they're like- Yeah

[00:14:59] Christine: [00:15:00] "No." So it's, you know, it is, it is crazy.

Christine Career Pivot Research

[00:15:09] Christine: And, I did a post-grad module there. I suppose to pull back a step, I was in chartered accountancy. I left it at that point where they were like, "Here's the half frosted glass." Mm. Like, that's not really gonna work. And then worked for my brother-in-law for eight years, but then got kind of a little bit demotivated because it wasn't the career I'd chosen, it's hard because you do all this studying, but then you become chronically ill and have narcolepsy, but you're still the person that was super ambitious and wanted to get good grades.

[00:15:44] Christine: You were mentioning this as well,, you had to be the best. You had to almost not let them have any space to criticize you because-

[00:15:53] Liz: Mm-hmm ...

[00:15:54] Christine: there was already this overarching thing. So I basically went to work for him for about eight [00:16:00] years, and then I just had burnout really bad.

[00:16:03] Christine: And then I just was like, "I don't know what I want to do." , I was off sick for a while, and then I'd started doing this post-graduate. And in the research that I was doing, I thought, "I'm gonna use this time to really look into how bad narcolepsy support is post-diagnosis." It was in the form of, like, a business analysis, so it was, like, industry reports and then, like, problem-solving - business analysis tools.

[00:16:30] Christine: But what was so apparent was there was no knowledge. , There was no industry report for sleep. When you went to look at the specialized medical services, it was like, okay, they fall within that, but it was like a weird Where's Waldo. Like, you were, like, looking between the gaps thinking, "Right, okay

[00:16:50] Christine: there's actually nothing." So when you look up even for the General Medical Council, they don't have a specialty for sleep. You're either a, a [00:17:00] neurologist or a respiratory consultant, and , they said they don't want any more subspecialties being added to it, which means it's gonna freeze the expansion of services like sleep and narcolepsy.

[00:17:13] Christine: So- ... there's such a huge problem in terms of- how we get treated. Sorry, I'll summarize this very quickly, but basically I was reading about, like, how people with narcolepsy have poor employment outcomes, lower income, higher, , comorbidities. But, like, there was just a real, "Wow, this is kinda sad.

[00:17:35] Christine: We're really being underserved here."

[00:17:38] Liz: Yeah.

[00:17:39] Christine: So it's, it's difficult to navigate in that way. But for you, , you were in university, they weren't great. And then what about your first job post that?

Liz First Job and Napping Setup

[00:17:51] Liz: So my first job was in an independent neuro rehab hospital. And I would say, [00:18:00] actually They were fairly receptive, and I would say they didn't make it feel like a big deal, which was really nice actually.

[00:18:10] Liz: And so I had... I think I used to sleep in the office room at lunchtime, but it wasn't the best space because it used to be a small room, which was better, and then we moved into this almost, like, conservatory type room that had 360 windows.

[00:18:36] Christine: Perfect.

[00:18:37] Liz: Yeah. Love it. Like a little exhibition for everyone.

[00:18:40] Christine: - Here is our employee with narcolepsy.

[00:18:43] Liz: Yeah. We're so good at hiring disabled employees. Meeting our quota. Come and have a look.

[00:18:53] Christine: It's like that hotel in Ibiza where you can stay in it for free, but the room is completely glass.

[00:18:58] Liz: Oh my God.. I've not heard of that

[00:18:59] Christine: [00:19:00] Is it the Paradiso or something? But yeah, it's like...

[00:19:02] Christine: And there is somebody in the room. I rem- I remember seeing it being like, "That's so weird." But this was during the day. But I was like, "Imagine at nighttime. That's so bizarre."

[00:19:10] Liz: Hopefully the bathroom isn't also glass. That would be awkward.

[00:19:13] Christine: Oh, no. I know.

[00:19:14] Christine: Yeah. Um, so yeah, sorry. So they gave you an office or a little office cubicle?

[00:19:20] Liz: So I slept in the office, yeah, to sleep in. , And that was back in the day when I was just taking modafinil, so actually it was a lot easier for me to fall asleep. Um, so I wasn't taking sodium oxybate then, so I was obviously very sleep deprived, just using stimulants to get by.

[00:19:40] Liz: And so my lunchtime nap probably did happen, like, fairly easily. Compared to now anyway, where I need a very specific environment for me to be able to nap restfully now. , So yeah, the first job I actually felt like it was okay. And I, but to be honest, I was so traumatized from my [00:20:00] university experience that I would have accepted anything that they would have given me because I was just grateful to be able to work.

[00:20:09] Liz: Yeah. And to be, like, accepted. Um, and I just remember that overall feeling of like, "Oh, I actually made it to the workplace," because my university literally told me I would never be a speech and language therapist, and no one would ever make reasonable adjustments for me that I needed. So the fact that I had done it, you know, made me feel good.

[00:20:33] Liz: But, looking back, I definitely could have- - advocated for myself in a better way, but I'm not surprised I didn't because I just didn't have the tools back then.

[00:20:43] Christine: I think you're so young as well.

[00:20:46] Liz: Yeah.

[00:20:47] Christine: Like, you nearly have to have sympathy for your younger self doing what they could do because , you're made to feel like an outlier- Mm-hmm

[00:20:55] Christine: and you kinda have to fight for yourself. So for me, when I look back as [00:21:00] well, I'd be like, "Oh, I could have done this, could have done that," but at the same time, you're fighting for yourself, and no one else around you understood, so you know, it, it's actually brave that you did it in the first place.

[00:21:11] Liz: Yeah. And we're literally, you know, when you have your first job, you're, like, 22, so you don't really have that much life experience. I hope Gen Z is better at advocating for themselves and putting boundaries in place because I feel like that is more talked about now, and, you know, discrimination and things is more talked about now.

[00:21:32] Liz: But, you know, even 10 years ago it really wasn't on people's radar.

[00:21:39] Christine: No. Oh, it's, asking for something like that felt so outlandish.

[00:21:45] Liz: Mm-hmm.

[00:21:45] Christine: Whereas now I see on job applications, "Do you need reasonable adjustments for your interview?" Yeah. Which is crazy to me because that's just so different. 

Exam Accommodations and Fairness

[00:21:55] Christine: Like, when I failed out of my, [00:22:00] basically, chances of doing the chartered accountants exams in the first job, they had a really strict policy that they wanted you through three and a half years, um, including repeats.

[00:22:14] Christine: So- ... I was a non-relevant background, so they wanted me, basically, I, because I was non-relevant, I did need to do about three years, so I had the CAP 1s, CAP 2s, FEs, autumn, summer to do for, like, in the entirety. Whereas people could have come in from university, done a master's, and had the three and a half years to pass one set of exams.

[00:22:38] Liz: Wow.

[00:22:38] Christine: So there was no, there was no wiggle room for me in the first place, but then when I went to the partners in Dublin, and I will never forget this woman, I said to her, "You know, the actual chartered institute allows you to have, a separation of exams, so you could do two in the autumn and two in the summer.

[00:22:59] Christine: , [00:23:00] Could I please do that?" And she was like, "No. Well, that would be opening the floodgates." And I'm like, "Floodgates? How many people with narcolepsy?" You know, do you really think... Like, in Ireland and Northern Ireland in general, never mind within this firm- ... so it's kinda like that attitude of, you know.

[00:23:20] Christine: Only there was a man, uh, on the board too who said his brother-in-law had sleep apnea and that he saw how it really impacted his life, that I was allowed another chance to do the exams, but set up for failure because I had to do all four within four days.

[00:23:36] Liz: Mm-hmm.

[00:23:37] Christine: And I did fail them.

[00:23:37] Liz: Oh, my God.

[00:23:38] Christine: I passed two of them, failed the other two.

[00:23:40] Christine: And I'm like, "If only you'd allowed me to do that next two in the next sitting, it would've made all the difference." But that kind of like fear almost of, um, giving someone accommodations is wild. Like, really, really crazy. Yeah. And you know what the funniest thing is now? [00:24:00] It's like Gen Z are gonna be coming in with all their demands.

[00:24:05] Liz: Mm-hmm.

[00:24:05] Christine: Like, they're gonna be coming in guns blazing, and it's like you've no option but to open those floodgates.

[00:24:11] Liz: Yeah. And it's not 'cause of us.

[00:24:14] Christine: Yeah, exactly.

[00:24:16] Liz: It's actually- ... so interesting you say that because I've really come across that attitude in the workplace, specifically around asking for things like working from home, which obviously I'm in a face-to-face role, so it is tricky, but we do have a lot of admin report, et cetera, and meetings which can be done remotely.

[00:24:41] Liz: But I've really found that when I've asked for reasonable adjustments, oh, it's my pet peeve when the manager comes back and they're like, "Well, we need to think about whether that's fair for the team." It's just so [00:25:00] silly

[00:25:01] Christine: This has got nothing to do with the team.

[00:25:03] Liz: I know, exactly. And it's like reasonable adjustments are, you know, individual adjustments for a specific need.

[00:25:11] Liz: It's not about someone else. And also, it is that fear around, well, if we let you do that, everyone else is going to expect to do that.

[00:25:23] Christine: , It's really about leveling the playing field, if anything.

[00:25:26] Liz: Mm-hmm.

[00:25:27] Christine: Because surely you're a more, you know, productive team member by getting those accommodations than without them.

[00:25:35] Liz: Exactly. And that's what people don't realize, I think, who don't have disabilities, is that the playing field is inherently biased or inherently unfair already because everyone else can get to work and can stay and work all day. And, um, you know, they might have childcare needs. That's obviously a whole different thing, but having a [00:26:00] disability already makes getting to work and staying in work the whole day so much harder.

[00:26:05] Liz: We're already working, you know, probably 100 times harder than the average non-disabled person just to get through the day, let alone do all our work tasks. And so by giving us these, like, little adjustments, it's not giving us a one-up on everyone else. It's actually just making our lives a little bit more equal to other people in the team.

[00:26:28] Christine: Yeah. That's something that really needs to be understood by a lot of corporations and workplaces. It's like, I think that there's just that fear all the time of employees not being, um, they're not being productive enough versus- ... what they pay them, and that's just, that's a, that distrust is just, it's an ick.

[00:26:56] Liz: Yeah. A big [00:27:00] ick.

[00:27:01] Christine: . 

Later Jobs Burnout and Managers

[00:27:01] Christine: So the first place, and then you moved to another. Have you, did you move to a similar job for your second one, or was there anything that prompted that?

[00:27:12] Liz: So in my second job, oh, I actually then went to work in a general hospital, and they did find a room for me to nap in at lunchtime, which was, like, slightly off the site. ... But I really, didn't like the job at all, actually. And I think I was in quite a bad place mentally because I'd just started sodium oxybate, like, the year before, and it had triggered quite intense anxiety in me.

[00:27:39] Liz: , I was actually so anxious in the job in the hospital that- I wasn't even napping at lunch times, and I wasn't taking my stimulants. Like, that's how strong the anxiety was. It was just keeping me awake all day.

[00:27:51] Christine: Yeah. Oh, wow.

[00:27:53] Liz: So I ended up quitting that job, and then I went to work with children, which I really enjoyed.

[00:27:59] Liz: [00:28:00] Um, and again, looking back, the reasonable adjustments weren't great. I mean, I was working five days a week. I wasn't working from home at all. It was slightly before COVID, when working from home, like, wasn't really talked about. And I was having my nap in this little room, but the room... There wasn't, like, a way to book out the room, and the room was also used by people who had, kind of religious needs.

[00:28:28] Liz: So they would, pray at certain times, and sometimes we'd both be needing the room. And so yeah, that was a bit tricky. I eventually moved into... Well, I've had, like, two other roles since then. Um, and I would say, to be honest, I'm, I am a bit burnt out from advocating for myself. , And in my last job, I had one really supportive manager who [00:29:00] as soon as I started, she just got it, and she talked to me with, like, so much empathy and so much respect.

[00:29:07] Liz: And she even said things to me that no one had ever said to me before. Like, "You know, we... It's still really important for you to have a work/life balance, so, like, how can we support you with that?" And, , it just made me feel, like, really seen. And I appreciated that so much because, I don't know, it even, it kind of actually, it gave me more confidence to say, like, "Actually, yeah, these things aren't really working for me," or, you know, "This is what I need."

[00:29:38] Liz: , But then my manager, halfway through my time there, so after the first year, my manager changed because of, restructuring. And it was like going back to square one again and having to really advocate for my needs again, having to, like, justify things. , Yeah, really having [00:30:00] to, deal with comments like, "Well, I have to think about whether that's fair for the team," or, "Well, you seem willing to adjust,

[00:30:08] Liz: something in this situation but not in that situation, so is it just that, like, you can't be bothered to?"

Workplace Scrutiny Anxiety

[00:30:13] Liz: Comments like that. And it, it just, it became, like, a real source of anxiety for me, to be honest.

[00:30:21] Christine: No wonder. I think even as well, you're put under a microscope because they're, almost in a way looking for you to fall so that they can be like, "I knew. I knew they weren't actually disabled."

[00:30:37] Christine: And you're like,

[00:30:37] Liz: Yeah. ...

[00:30:38] Christine: are you okay? Like- ... it's a real strange, not encouraging. And as you say about, , that manager having empathy, that means the world. , That really means so much. Mm-hmm. When someone can just be like, "It's okay," and you're like... 'Cause you're putting yourself under so much pressure [00:31:00] anyway.

[00:31:00] Liz: Yeah.

[00:31:01] Christine: Without all these middle management, top management putting their expectations on you, it's a horrible feeling to feel like you're trying your best and they can't even see that. We are putting, like, 200% in more, and-

[00:31:17] Liz: Yeah ...

[00:31:18] Christine: they have this poor view of you, and that's the worst thing.

[00:31:23] Liz: Mm-hmm.

[00:31:23] Christine: And that's, like, something I've had to work with, , in terms of, like, , I used to get so annoyed when people , would think certain things or react in certain ways, and recently I'm like, I know I'm a good person. Mm-hmm. I know I put my effort in, and I know I wouldn't be dishonest, or I'm not, like, trying to, you know, chance my arm.

[00:31:43] Christine: But I used to think, they would make you think that it's a you problem, when really it's a real lack of understanding on their behalf and lack of empathy.

[00:31:52] Liz: Yeah.

[00:31:53] Christine: It's shocking. So yeah, the accommodations are a hard one because it's like, as I was saying, it's like you get,, a breadcrumb [00:32:00] and then you're like, "Oh, um, that's better than nothing."

[00:32:03] Christine: And then-

[00:32:03] Liz: Yeah ...

[00:32:04] Christine: you're still not, you know, fully being catered for.

Managing Symptoms at Work

[00:32:19] Christine: , What would you say in terms of, like, your job? What would you say in terms of, like, wakefulness? Is it interest in the job, does that help your wakefulness? Or is there anything that actually helps your symptoms be, like, more, feel more managed?

[00:32:42] Liz: So for me, my symptoms are quite well managed. I'm quite lucky, um, 'cause I responded really well to sodium oxybate, and then I also take Wakix or pitolisant. So I mainly only have to nap at lunchtime to get me through the working [00:33:00] day. It is sometimes a bit difficult to nap because obviously I'm taking a stimulant in the day, so I have to really relax my mind in order to be able to do that.

[00:33:08] Christine: Yeah. 'Cause I'm only on stimulants. I know what you mean, though, when the stimulant is stimming and you're- Mm-hmm ... lying down, like, "My body's exhausted. Please, I need to nap." And yeah, it's an odd feeling when that's, like, out of sync. But anyway, sorry, go ahead.

[00:33:24] Liz: So yeah, for me, it's just the things that help are making sure I get my lunchtime nap so I'm alert in the afternoon.

[00:33:32] Liz: And then just, like, keeping on top of my meds and having, like, movement breaks every hour and stuff. .. Even if I'm not interested in something, I can usually stay awake with all of that in place. But what about for you?

Motivation Naps and Mindset

[00:33:46] Christine: Yeah, I struggle when I'm not interested in it. I think that's something that I'm really trying to work on at the minute.

[00:33:54] Christine: Because my energy is so limited, when I am [00:34:00] interested in something, it helps so much. , When I was doing that post-graduate, I was so focused, it was crazy. Like, I still had to nap. I had to really, um, kinda break down the way I did my work. It was the first time I had done an assignment since uni where I didn't have, like, an anxious meltdown.

[00:34:20] Liz: Wow.

[00:34:22] Christine: , Because I was like, "I just want to do this well. Stay calm. You can do it, but, like, take your naps, and when you get tired, just go to sleep and start again.- There's no guilt, there's no shame." I was literally telling myself this, and it was an interesting experiment, to be honest, because before that, like, I had so many anxious meltdowns where I had fallen asleep and lost my evening and had an exam, and that was because I didn't know what was wrong with me, and I wasn't trying to manage my symptoms myself.

[00:34:55] Christine: I just didn't know what it was, and I was falling asleep randomly. . So even though I [00:35:00] haven't got the sodium oxybate, it's that kind of awareness- .. of that's enough now. You're going to bed. You're not gonna, you're not gonna go down another, another rabbit hole. That's enough work for today.

[00:35:11] Christine: And how I do what I do in a day is so different to what I used to do. I used to have this to-do list the length of m- I was gonna say my arm. My body.

[00:35:21] Liz: Wow.

[00:35:22] Christine: And that would be, it would be, like, constantly, like, you're not doing enough, you're not doing enough. Mm-hmm. And now it's like I've really changed the way I view it, and it's, yeah, it's changed things that way.

Job Search and Self Employment

[00:35:34] Christine: But that's where I'm at now, where I've basically, I've done that post-graduate. And I'm, I am looking at jobs, but in all likeliness, it would have to be part-time, especially, like- I think it's just, I, I can't see myself in a job working for someone that I like at the minute from what I've looked at.

[00:35:58] Christine: Now, I've done a lot of [00:36:00] things since I've been off. So I went to, a career coach. I got my CV converted to ATM, I think it is. So for anyone that doesn't know what that is, it's essentially your CV, needs to be picking... Like, include the keywords that they're looking for, because they will put it through an AI scanner often.

[00:36:22] Christine: And loads of people are getting rejected for jobs that they are more than qualified for, just because they haven't included those keywords. So did some work on that and then worked with Catalyst, which is like a business hub here. What I've discovered is there's loads of support for entrepreneurs here.

[00:36:40] Christine: So I'm really, like, trying to, take advantage of all that's available, basically, to just go, well, I'm just really gonna try and work for myself, and if I can't, then I'll go back. , I'm trying to run with it at the minute. They were really supportive. I even did a program with Go Succeed, and the actual goal of the program [00:37:00] was for people that were,

[00:37:02] Christine: economically inactive. Due to a disability. So, um- Yeah ... they were really good with, like, support and things like that. So I'm just really trying to follow- that trail for a while, and I've given myself kind of like this weird deadline of, by the end of the year, kind of like it's kinda going somewhere.

[00:37:21] Christine: And then, otherwise, I'll have to go back and work on something that I'm not that interested in.

[00:37:27] Liz: I love that for you.

[00:37:29] Christine: Yeah. It's, it's been difficult though. Like, I've had to go on Universal Credit to- support, my rent and things. I think being a student and being broke does teach you weird principles.

[00:37:40] Christine: Like, you can adjust. It's just obviously your lifestyle is a lot different, but it's, , learning how to budget and things like that just give me a wee bit of more autonomy over what I wanted to do. I kinda decided, like, I'd saved a few months', um, wage to, that I couldn't see where I [00:38:00] wanted to land when I was in the other job because I was so tired and so burnt out.

[00:38:05] Christine: I had no energy to apply for jobs or- ... to even think what was kinda like next. So I was like, "Right, I want to actually not leave here and go straight to another job." Yeah. I want to leave here and have some time, because my biggest fear is being, back in that office in a situation where you're, like, eyes are rolling, you're trying to do your best.

[00:38:28] Christine: You're trying to keep people almost off your back. Or from noticing you kinda thing. Uh, , so that's what I'm trying for now. 

Why Diagnosis Fails

[00:38:41] Christine: But who knows what it's gonna... I think that, that research on narcolepsy has really lit a fire. . And this is not good enough. Like, it's really bad.

[00:38:46] Liz: Yeah.

[00:38:46] Christine: And it's both the fault of the government deprioritizing sleep health and also medical schools.. They just do not teach them to any sort of standard. Like, one lecture in [00:39:00] seven years, and it's respiratory-focused. So how do we expect the future generation to be diagnosed and have a better time than us in terms of diagnosis process, anyway?

[00:39:11] Liz: That's crazy. So there's no, like, when you were studying, you kind of looked into what they actually teach in medicine, and it was basically nothing?

[00:39:23] Christine: Yeah. And there was a study that was, like, measuring what they did 20 years ago versus now, and there was, like, 1% improvement.

[00:39:34] Liz: Wow. Oh my God.

[00:39:36] Christine: I think it was 1%. It was very small numbers, and you're like, "This is not, you know... Is there any wonder that we're having a problem with diagnosis and things like that?"

[00:39:46] Liz: I can totally relate to you having your, was it eight-year career, you said, and then burning out.

[00:39:55] Christine: So yeah, so four years in accountancy and then eight years where I was just sort of [00:40:00] lost. Yeah.

Quitting London Job

[00:40:02] Liz: Because, so I, I had a job that I loved that I had to leave 'cause the funding ran out, earlier this year. And then I started a new job in London, and it was a speech and language therapy job in a private team.

[00:40:17] Liz: And I had so many conversations with them beforehand about narcolepsy, and I think they could tell I was quite anxious about, you know, would it work, and I'll need somewhere to nap, and I don't wanna be traveling too far. And they, they gave me a lot of kind of reassurances. And one thing I made it really clear I didn't wanna do was sleep in a school, because I was meant to be in a school for one of the days.

[00:40:41] Liz: And from experience, trying to sleep in a school is never a good idea because it's so loud, there's such limited space. You know, there's kids, like, screaming, running, crying everywhere. And when I started the job, they were having me travel across, I [00:41:00] think it was, like, four different corners of London. So I was going to, like, Greenwich one day, Stratford one day, Clapham one day, and then kind of just doing, seeing sessi- people for sessions all around London.

[00:41:14] Liz: So so much travel. And then they also had set up for me to sleep in a school, so be in a school for a whole day and nap in the school instead of just being in in the morning. And within the first two weeks I was like, "This is just not gonna work for me with the narcolepsy." And I ended up telling my manager that, and she was kind of like, "Oh, well, you know, would it work better for you to have some work from home time and to be just based in one office?

[00:41:45] Liz: Because I can try and negotiate that for you." And I was like, "Well, considering I'd said all these things would be helpful before I started, and that wasn't offered, it's kind of made me just want to leave." [00:42:00] Because, I mean, the other thing was that I was wanting to leave London anyway because my, tenancy was up, so I needed to move house as well.

[00:42:09] Liz: So it all kind of came together that I was gonna leave London in the end. But, yeah, I just thought, like, I'd had all these conversations with them beforehand, and they could have offered me a job which would have worked way better for my narcolepsy, but they just didn't because they just wanted to, like, squeeze every last drop out of me.

[00:42:29] Christine: They were chancing their arm

[00:42:30] Liz: Yeah. But then it's like, okay, well then I'm not gonna do a job that doesn't work for me. And I think I've got to that point in my career now, and it's probably being in my 30s, to be honest. And I have to add the caveat that I'm very fortunate because I do have a little bit of, you know, savings where I can not work for a certain amount of time and, like, I can go back and live at my mom's house, which is where I am now.

[00:42:55] Liz: Which I know is not an option for everyone. But I just [00:43:00] wanted to I, I knew I had to quit that job because, I mean, I just... it just wasn't gonna work with the narcolepsy. Like, they didn't have good places to sleep or, the travel was too much. And I didn't wanna jump straight into another job again.

[00:43:16] Liz: Like, I wanted to give myself time to think, "Okay, I have put my career first for the past, like, 10 years and I've worked really hard at it. But I have, if I'm being honest, you know, sacrificed a lot of my wellbeing and work-life balance for that, and my mental health. And actually, what do I want my life to look like going forward?"

[00:43:38] Liz: Because I don't wanna end up in another situation where I'm in a job that's, like, completely burning me out. Because, like, I think in my head I always had this idea of one day, one day I'll, you know, have a good work, work-life balance. Like, one day, um, I'll be feeling better in, in all of this. And I kind [00:44:00] of realized, like, oh, I know I'm not old in my 30s, but, like, life is actually ticking by, and I want to try and create that life for myself now.

[00:44:11] Liz: And one of the options I've also thought about, like you, is working for myself. Because I just really cannot have one more conversation with an employer about reasonable adjustments and working from home that doesn't go well. It's just so tiring and so draining. And I just... It's like, as someone who's disabled, and I'm sure, I think you touched on this earlier, it's like my biggest fear is that someone is gonna think that I'm not trying my best or I'm just trying to, like, get free, free stuff. You know, like, trying to get a free pass for stuff.

[00:44:51] Liz: And yeah, I just... That's not the case. And often when I start a new job, I feel the need to be like, [00:45:00] "Look, I know I have narcolepsy, but I'm a really hard worker, and, I'm not gonna take the piss with, you know, reasonable adjustments and all of that." And I shouldn't really have to say any of that.

[00:45:09] Liz: Like- Yeah ... that should be a given.

[00:45:11] Christine: You feel the need to prove yourself.

[00:45:13] Liz: Yeah, 100%.

Burnout to Flexibility

[00:45:22] Liz: And I say, yeah, I'm having a little bit of- distance from the career that I had and a little chance to kind of really reflect and think, like, what do I want my life to look like going forward. Um, I have actually got another job lined up, which is part-time, which I'm really looking forward to, and I've had really good conversations with them so far, so I'm feeling positive about that.

[00:45:48] Christine: Is that office based or work from home or?

[00:45:50] Liz: So it's a mixture of, like, community and working from home, but in a way where I should always be able to be back at my home af- around lunchtime [00:46:00] to nap. Perfect. Yeah. So that's great. And then I'm gonna try and build up my private caseload on the side, um, 'cause then obviously I get a bit more flexibility, and I can choose who I work with and when I work with them and how I work with them, whether it's online or, you know, in person.

[00:46:19] Liz: , So it sounds like we've kind of ended up in the same boat a little bit where we've sort of burnt out in a way from our being in a team and trying to advocate for ourselves. And actually we're like, maybe it's worth giving it a go working for ourselves now we have these skills and the knowledge.

[00:46:38] Christine: Yeah. And I think even, like, when I was completing that assignment, the most odd thing was my mind was quiet because no one was pressuring me. , I didn't feel the pressure of someone else needing things done or... It was, I was doing this for myself, and [00:47:00] I thought, you know, oh, maybe... I think in your back of your head, you worry that, , if someone's not demanding things or having deadlines, I always have this fear I'll become complacent.

[00:47:11] Christine: But I'm like, "No, I actually am a hard worker. No one's making me do this." But I am able to actually work better because my whole nervous system was starting to calm down. There was, like, nobody, like, you know, expecting anything of me, only myself, and it was, like, a weird thing where I was like, I can actually produce good work, off my own back.

[00:47:33] Christine: I actually am motivated. It's just that, you know, it's like the conditions that are in place weren't, suiting me, and I, was like, well, maybe if I set my own conditions- I can, you know, work under that. So yeah, , we've came to the same kind of place in that our, the workplace, sadly, culturally, is not fit [00:48:00] to really embrace what it takes to provide accommodations that are suitable for each individual.

[00:48:08] Christine: It's almost like they would nearly need, like, a disability-- I think they might exist already, these, like, disability consultants, where they, like, come in and they talk to the employer for you. It's like there would nearly need to be, like, a narcolepsy person saying like, "Listen here," you know, so that they can almost bat off.

[00:48:30] Christine: Because, you know that lack of empathy? That can really impact your confidence. And then you get really nervous about starting something. So it's like y-

[00:48:39] Liz: Yeah ...

[00:48:39] Christine: almost like you would need another person to, to go, "This is the terms. This is non-negotiable, actually. And, you know, if you don't really, you need to educate yourself.

[00:48:49] Christine: This is nothing to do with the person."

[00:48:52] Liz: Mm-hmm.

[00:48:52] Christine: Because all that projection, um, I, I fi- I found that hard. I've been, like, offloading other [00:49:00] people's views. I'm like, "I actually don't think this about myself. It was other people."

[00:49:04] Liz: Yeah.

[00:49:05] Christine: Like, were putting these kind of expectations or... You remember every little snide comment, every little, like, implication that you were not enough or you weren't doing enough, and it's, it's mad.

[00:49:18] Christine: I just want to, like, go in and protect someone else for some reason. I don't know why. It's like no one was there to protect us. It, it feels like there, there needs to be more in place there. It's interesting. I would just hope that, like, by us talking and having our conversation, that other people feel empowered and don't feel as alone.

[00:49:39] Christine: 'Cause a lot of people with narcolepsy feel alone anyway, but then they feel alone, even more alone in a workplace. And I asked my consultant at one time, pure desperate, like, "What does your other patients do for work?" And he was like, "Well, there's no chartered accountants and there's no doctors."

[00:49:57] Christine: And I'm like, "Is that good enough? I don't [00:50:00] know." I know there's limitations on, on your energy and whatever, but I'm like, "I just don't think that's good enough." I don't know.

[00:50:07] Liz: No. That's actually a really good point, because it's like, well, it's not because we don't have the motivation and the ambition and the intellect to do those roles.

[00:50:20] Liz: It's actually because society doesn't support us to get to those points.

[00:50:26] Christine: No. Both government and medical schools, and it's like, without them doing anything, how, how are you meant to go into, like, an average workplace and have them understand? It's hard to know where to begin.

[00:50:41] Liz: Yeah. . One thing I often think back to is how the course leader at the university literally said to me- You know, "We don't think you'll ever be a speech and language therapist."

[00:50:53] Liz: And they were trying to convince me to study to be a librarian or something. And, , I think about all [00:51:00] the patients-

[00:51:00] Christine: That would be the worst place. You'd be asleep all the time.

[00:51:02] Liz: I know. Be so quiet in there.

[00:51:05] Christine: Oh, it's so quiet.

[00:51:06] Liz: It's so cozy. And I think back to all the clients that I've worked with, and all the clients that I've actually made a difference for, and if I had listened to them and let society's stigma, you know, bring me down and not achieve my goals with my career, then they would, the NHS would have had one less speech and language therapist.

[00:51:32] Liz: And, you know, 300 families I've worked with over the past 10 years would, yeah, they'd have had someone else. But they wouldn't have had me. And I like to think-

[00:51:42] Christine: That's so true ...

[00:51:42] Liz: i've made a difference.

[00:51:44] Christine: And like the government is always harping on about, you know, people on, like, disability benefits, and it's like, well, uh, there is no one meeting people with chronic illness in the middle.

[00:51:56] Liz: Yeah.

[00:51:56] Christine: So you are for- yous are actually forcing [00:52:00] taxpayers out of the system because you won't make accommodations for it. So, you know, I always think that's crazy because you're like, well, you probably, in certain cases, wouldn't have to spend so much money in terms of, like, even just the aftercare of being neglected from not being diagnosed.

[00:52:23] Christine: There's a lot of, like, comorbidities if you're not diagnosed in time. And you're just like, there's just, the approach is so backwards.

[00:52:31] Liz: Yeah, it really is. And I hope, I know our conversation, uh, maybe it is a bit doom and gloom about careers, but I feel like Yeah, hopefully it will make people feel less crazy if they're also going through something similar in their workplace

[00:52:51] Christine: This conversation is going on in i- in a lot of workplaces across the country.

[00:52:57] Christine: But they aren't getting what they [00:53:00] need, and because they're in the smaller numbers, they're not getting the support. So, yeah, start a movement.

[00:53:07] Liz: Yeah. Rebellion, here we go. Yeah.

Trust and Adjustments

[00:53:10] Christine: Is there anything else do you think we haven't touched on?

[00:53:14] Christine: I think just to say, and this is one of the notes I made for myself, is that we, as people with disabilities, I think we just wanna be trusted by employers.

[00:53:28] Christine: That when we say, "This thing is hard for us," that we're believed, even if they can't see our disability, which is obviously the barrier to a hidden disability. , And when we ask for reasonable adjustments, it's because we actually need them, not because we're trying to play the system or we just can't be bothered to do things.

[00:53:49] Christine: It's because, like, actually, you know, I'm a hard worker, but in order to be the most efficient worker, this is what I need from my employer. So just trust, I think, [00:54:00] makes a huge difference. And maybe that comes with time, but I wish that more managers and workplaces would give that trust a bit earlier on in the process.

[00:54:12] Christine: 1,000%, and I think even for something like narcolepsy, you don't just get a narcolepsy diagnosis handed to you. It's, you know, an overnight sleep study. Like, when you have a diagnosis by a medical professional, why do they think they know better-

[00:54:28] Liz: Mm-hmm ...

[00:54:29] Christine: than the medical professional? It's, that's, there's a lot of things, even when it comes to getting, like, disability benefits and things, it always blows my mind that even if you have a diagnosis, it's not enough.

[00:54:43] Christine: Even, like, saying, "Oh, what's a good day? What's a bad day?" It's like, well, someone with, someone with narcolepsy, even if it's well-controlled, they're still having a very different day than someone- who doesn't have narcolepsy, and they are definitely disadvantaged in [00:55:00] the workplace.

[00:55:00] Christine: So, you know, it's, I don't know. It's hard to know how to solve it. It's a cultural thing and the awareness piece that needs to really catch up on

[00:55:10] Liz: And I think the tiring thing that I found, and maybe you've experienced, is like when you're the person who has to educate others in the workplace instead of those people doing the work themselves, even just about general disability or the Equality Act or reasonable adjustments and the law, it, yeah, when the burden is on you to do that, it becomes like another task on your to-do list that you don't have the time and energy for.

[00:55:38] Liz: Um so if there are any employers listening, I think it's just about looking up the Equality Act, yeah, knowing the reasonable adjustments law and policies, and actually doing the work themselves instead of expecting us to educate them.

[00:55:56] Christine: Yeah. And if they do have disability and inclusion [00:56:00] initiatives, you know, have a team that are well-rounded in terms of conditions, I would say.

[00:56:07] Christine: And knowing when to ask someone else when you don't know the answer. I think sometimes people are too proud to say, "Oh, I don't know."

[00:56:15] Liz: Mm-hmm.

[00:56:16] Christine: Please just ask someone else that knows a little bit better and can kinda translate the language for you if it's, you know, something that you don't understand, because they don't understand because they don't have it,

[00:56:30] Christine: But you don't have to have the condition to have empathy. You just have to have a willingness to, to trust. And another thing I would add is the amount of people with narcolepsy that I have connected with in the past, whatever, nine years since I've been diagnosed, so many intelligent, really smart people, like crazy creative, like they are missing out

[00:56:56] Christine: even just the disabled community and chronic illness people in general, [00:57:00] there are so many intelligent individuals that they're essentially missing out on because they won't, you know, adjust. So yeah.

[00:57:10] Liz: They won't be flexible, but they expect us to be flexible, which really means not having needs, not having reasonable adjustments.

[00:57:19] Christine: Yeah. That might be, um, a good place for us to kinda finish, I think.

[00:57:26] Liz: Yeah, sounds good. 

Resources and Sign Off

[00:57:32] Liz: I do wanna do one shout-out. Um, I did a course in the NHS called the Calibre Disability Leadership Course, and it's a course for people who work in the NHS who have disability, uh, disabilities to develop leadership skills, and I found that so empowering.

[00:57:50] Liz: It talks a lot about, you know, your rights, how to communicate to managers, and one of the things the lead guy said was, "People would rather you change [00:58:00] your body than they change their rules." And that always stuck with me, and there's lit a little fire in my belly of advocating for myself. So if anyone else works in the NHS and has a disability, I highly recommend looking out for that course.

[00:58:14] Christine: And then I think I would just add to that, if you are in Northern Ireland or England, the business hubs are so good. Here, Go Succeed, Invest NI, Catalyst. There are so many resources out there, and it's until you really have time to explore it, so do look into it. There will be something for you.

[00:58:36] Liz: Nice.

[00:58:36] Liz: Should we end with happy napping?

[00:58:38] Christine: Yeah. Okay.

[00:58:40] Liz: After three. One, two, three. Happy napping, everyone. Love that. It's so cheesy, but it's the best.

Patreon and Community Plug

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Thank you very much for your support

Narcolepsy Navigators is produced by a team of volunteers working for the Naps For Life CIC, which is a [01:00:00] nonprofit group dedicated to improving the lives of people with sleep disorders through community action. You can help grow our podcast and join our sleep disorder support group by visiting the website www.napsforlife.com.

If you or someone you know has a sleep disorder and would like to share your story on Narcolepsy Navigators, please email us at narcolepsynavigators@gmail.com. You can also support us by donating at the website. Happy napping everyone