Navigating the workplace with narcolepsy? Narcolepsy Nerd Alert: Narcolepsy at Work discusses gaining accommodations and practical tips for success.
The Narcolepsy Nerd Alert series invites listeners to dive deeper into specific topics relevant to living with narcolepsy. To explore more topics related to living with narcolepsy, visit our Narcolepsy Nerd Alert page and check out corresponding toolkits available to download for free.
Transcription by Mirela Starlight
Julie Flygare, JD is the President & CEO of Project Sleep, a leading narcolepsy advocate, speaker, published author, and Stanford Medicine X ePatient Scholar diagnosed with narcolepsy and cataplexy in 2007. She received her B.A. from Brown University in 2005 and her J.D. from Boston College Law School in 2009.
Tre Burge is a proud Iowa native, diagnosed with narcolepsy with cataplexy at age 18. Tre works with elementary school students with disabilities as a paraprofessional and spreads awareness of narcolepsy through content creation and his clothing brand, SLEpPY. Tre is a trained speaker with Rising Voices.
Lindsey Kizer is from Belmont, NC and leads her workplace’s Chronic Illness and Disabilities employee group. After living with symptoms for over 15 years, she was diagnosed with type 1 narcolepsy with cataplexy at age 29. She enjoys gardening, baking and spending time with her husband and dog. Lindsey is a trained speaker with Project Sleep’s Rising Voices program.
Nicole Zamary is a Human Resources professional at the University of West Florida. She was diagnosed with type 2 narcolepsy without cataplexy at the age of 44, after 15 years of struggling with unexplained sleepiness. Nicole is also a trained speaker with the Rising Voices program, as well as a grandmother and crafty person.
In today’s episode, Julie talks with three guests spanning a variety of career fields about the process for getting accommodations at work and how long it can take, what accommodations to consider asking for, finding work that matches individual energy levels and the ways in which colleagues or coworkers can help provide stimulation or understanding in the workplace as well.
The Narcolepsy Nerd Alert series invites listeners to dive deeper into specific topics relevant to living with Narcolepsy. This is a written transcription of the podcast “Narcolepsy Road Map” (Season 1, Episode 1) from Project Sleep.
Project Sleep is a 501(c)3 Nonprofit Organization, dedicated to raising awareness and advocating for sleep health, sleep equity and sleep disorders.
All guests and speakers express their own opinions. While medical diagnoses and treatment options are discussed for educational purposes, this information should not be taken as medical advice. Each person’s experience is so unique, which is why it’s so important to always consult your own medical team when making decisions about your own health.
Julie in intro: Navigating the workplace with narcolepsy can be intimidating. When should you bring up narcolepsy? And what kind of accommodations are helpful and also reasonable to ask for? In this podcast, we’ve brought together an amazing panel to discuss working in a variety of settings while living with narcolepsy. Tre Burge is a proud Iowa native and a paraprofessional working with elementary students with disabilities. He was diagnosed with narcolepsy type 1 at age 18 and is a trained speaker with Project Sleep’s Rising Voices program. Lindsey Kizer is from Belmont, North Carolina and leads her workplace’s chronic illness and disabilities employee group. She was diagnosed with narcolepsy type 1 at age 29 and is a trained speaker with Rising Voices. Nicole Zamary is a human resources professional at the University of West Florida. She was diagnosed with narcolepsy type 2 at the age of 44 and is a trained speaker with Rising Voices.
Julie: Hello! Good morning, good afternoon! Good evening, wherever you are! Really excited today to talk about narcolepsy at work! Such an important topic and we’re really excited to get to this topic. We have Nicole, hey Nicole!
Nicole: Hello!
Julie: And we have Lindsey, hey Lindsey!
Lindsey: Hey!
Julie: We hope to have Tre joining us shortly, and just to talk about what we’re going to go over, we’re going to talk about like, when you’re in the workplace, what accommodations should you be asking for? We’re going to start there ’cause we think that’s actually some of the burning questions you might have, and so we’re excited to hear from our panel about what accommodations they’ve had, and then we’re going to go through some other things— does the ADA protect people with narcolepsy? Spoiler alert, yes it definitely can. And when you should disclose a disability in the workplace, how to work with HR, supervisors and colleagues, and finding roles that might maximize your energy. So that’s a little bit of how we plan the discussion to go today. I just want to ask, Nicole and Lindsey, what kind of accommodations have helped you guys succeed?
Lindsey: I guess I’ll start. For me it’s kind of, you know dependent on the role, I have changed roles a couple times within my company as well as you know the different phases, we know narcolepsy’s obviously not always consistent. One of the biggest things for me is I do have flexible time. So I have a frame of time that I can start and end work. And, you know days that I’m feeling better I may start earlier than some of those rougher days. I do have additional breaks, and I also have a flexible lunch time. So if I have a day where the sleepiness hits me out of nowhere, I am able to log off, go take a nap, and then come back. And, you know I either make up the time later on that day, other days that week, or you know I do utilize FMLA sometimes when you know it just is not possible. A lot of the meetings and conversations I have and you know any kind of policy change, I actually get in writing. Just having the things in writing helps me be able to remember them, I have a ton of sticky notes on my desktop that I put those so that I remember, you know, things that have changed, and a lot of it has been just you know me communicating directly with my supervisor what I need. So that’s—
Julie: That was a lot right there! And what kind of role are you in, currently?
Lindsey: So, right now I’m in customer retention so a lot of you know kind of sales, and customer service, employment together. But I am at a desk and when I am in the office we do— I do have one that goes up and down, that allows me to both sit and stand which also helps.
Julie: Oh, wow! Cool! I’ve never had one of those. Do you actually use it?
Lindsey: Yeah, I do. And at home you know it’s just me having to actually get up, but having that change in— not just sitting you know, for hours at a time, really does help me with my wakefulness.
Julie: Awesome. Nicole, what kind of accommodations have helped you?
Nicole: So, I have a very similar kind of accommodations set up right now as Lindsey does. You know if I have a rough start in the morning, which I sometimes do, I do have the option to just notify my supervisor that I’m taking additional time, and just you know depending on how long that is, sometimes because I work over in the evening I don’t have to take leave or anything like that, we just kind of work together to make sure that it works for me and for our department. And then, you know whenever I am up and moving and come in, we just address it at that point. I also have some modified break schedules, so if I’m having a rough day I can just let them know, hey I need to shut my door for 15 minutes, take a power nap— nobody can disturb, that kind of thing. And I also have, during lunch time, I have a cot in my office. So I can take naps if I need to. [laughs] We often joke that you know, with the long hours that I work, that that is there so I can just stay overnight if I needed to you know, just crash at work! I also, we have meetings with supervisor or staff in the office I always have a follow up with my supervisor where she’ll— either she or I, will prepare notes from that meeting and then send them out to one another just so we can recap and make sure that we were on the same page. There’s often times I’m sitting in those meetings and not absorbing everything and she knows that, so she works with me on that. And she is okay for me to record a lot of our meetings, that way whenever, you know, we’re sitting and discussing things I can go back and listen to it. And the recorder I have, I can actually plug into my computer and it will download the recording and put it in a— like transcribe it for me. Which has been very helpful, and that’s pretty much just used whenever it’s she and I meeting one on one. So, but I do work in front of a desk all day, I actually work in human resources. So I am behind the desk most of my day, except for when I’m getting up and meeting with an employee or a new hire, but essentially I’m in front of that computer most of my day. Which does make some days very difficult.
Julie: Yeah. Well you know it’s funny when you talk about having the meeting of the minds after a meeting you know by sending the notes, I wonder— I feel like everyone should do that, like wouldn’t that be helpful for everyone? [laughs] I feel like, there always can be a lot lost in translation, sometimes, in meetings. So I think that’s probably a really good thing to do anyway. [laughing]
Nicole: Yeah, I feel like just writing it down again after we’ve talked a lot of times helps me remember some of the things we discussed, and kind of spur new memories of that conversation and, it’s been very helpful to do that.
Julie: Yeah, that’s a great tip for anybody. So, I was going to add too a little bit of my experience. I now run Project Sleep, so I have a pretty great employer— [laughing] but I did work two full time jobs before starting full time for Project Sleep. And so I was in an office in Los Angeles. The commute was one of the major challenges, for me. And so, especially the second job where I was driving about an hour there and about two hours home, one of the accommodations I asked for was to be able to work from home, one day a week, just to minimize that a little bit. And, that accommodation wasn’t fully secured, ever. But the one thing I did secure, working with HR and my supervisor to create a wellness room. That they actually ended up creating two wellness rooms. For me, but also because other people were using it to rest. And a room with a lock on it and a bench that was kind of like a comfortable bench, sort of? And I would bring in a blanket and a pillow in a backpack and I would put that down so I didn’t feel like I was sleeping right on the bench, and nap there. And made sure the door had a lock so I didn’t have too many hallucinations about people coming in, although I still did. So that was a really important accommodation process for me, at one of my jobs. And so— to go over some of those different accommodation ideas for people, an idea could be the ability to take a nap break, providing space for the nap, that was what was really important for me in that last job.
Julie: Flexible scheduling, I think you heard Lindsey and Nicole talk about that. Working from home, that was something I tried and never fully secured, this was before the pandemic, and I do wonder now if that would be much more acceptable, now that we kind of realize that people can actually do that successfully. This was interesting— I actually, to get these ideas, I polled a bunch of people with narcolepsy and some people that worked a lot of shift work talked about actually having more consistent scheduling, like not having to work a late shift one night, and then the early morning shift the next day. And having a more consistent scheduling was helpful for them, to keep their schedule consistent. Addressing cognitive issues— so, at one of my jobs I had a smart pen that could record the audio of a conversation with the people’s permission to do that. And that was really great, it actually wasn’t an accommodation for me it was just because the nature of my job, of interviewing doctors, and then having to write up about their science, all of us writers had that smart pen but— especially for my brain fog, and sometimes I would get really tired, that was really helpful. I know Nicole you talked about recording some meetings with permission as well. I know Tre— hopefully Tre will be able to join us, he has talked about speech to text technology which I think sounds really cool. And then reviewing tasks with supervisors. So, I just had this little point too, from Danielle Brooks who— but uh, Danielle talked about planning accommodations while thinking about your worst days. And I think that’s really a powerful statement for work as well as, you know we all want to be positively spirited, we want to think we can do the best but, it’s probably important to put things in place, like maybe don’t need a flexible schedule every day— but maybe a few times a month, and so having that in place is important. So do any of these accommodation ideas spark any additional thoughts from Lindsey or Nicole?
Nicole: And I should have added this, I do have work from home, as well. They like us to go in you know about two days a week, but weeks that I’ve had you know very rough days I am able to work from home as needed. So I just have to let my boss know that I’ll be working from home that day, but I do have the set up at home as well as in the office.
Julie: Good.
Lindsey: Yeah, and I’ve actually been discussing with my supervisor as of recently about options of maybe one day a week working from home, there’s certain tasks that I do, certain times of the pay period, that I could completely work from home and not— I mean, we did that during the pandemic, and it— it was— it worked. So we’ve been discussing scheduling a particular day that I could be at home on that day and know that every other Monday or something, I will be working from the house.
Julie: Yeah, I think just with limited spoons it’s nice just to be able to be in your slippers and— [laughs] and just be in your own space. I know, working from home all the time now, it does have advantages and disadvantages. [laughing] It can be a little lonely at times, but it can be really helpful for balance.
Julie: So I just wanted to give a quick overview— we will likely go into a lot more depth on this topic in the toolkit. I just want to— if you think about at least, definitely in the U.S., and hopefully in other parts of the world, but I know as far as U.S. law, that many employers are obligated to make reasonable accommodations for a disability under The Americans with Disabilities Act, ADA— to help employees meet their essential job duties. And so, does narcolepsy qualify as, you know, a disability under the ADA. Well it’s important to know that it’s always, and— supposed to be, a really individualized process, there’s not one list of diseases and disorders that qualify or don’t qualify, it’s always about your experience with the condition. As we know, narcolepsy isn’t the same for everybody. For some people it could be more impactful on your day than other people so it’s supposed to always be somewhat of an individualized determination. So in order to have a disability under the ADA, it’s a physical or mental impairment, must substantially limit one or more major life activities. And so, sleep was added as a major life activity, in 2008. And that really helped a lot of people with different sleep disorders to be able to show that they had a condition that should qualify as a disability, under the ADA. So, I think I want to go ahead and just ask about the process, and ask Nicole and Lindsey, when did you guys disclose? And ask for accommodations at work.
Nicole: For me, I was working at my current job for about 10 years before I had the official diagnosis of narcolepsy. So, up until that point I didn’t have any accommodation, I didn’t know that that was even an option. And I, you know, was trying to get to that diagnosis. So once I actually had the formal diagnosis from my doctor, I met with our individual in our office that handles our ADA accommodations, and got a letter from my doctor that I had to turn in and provide to them— different ideas of things that I thought would be useful, for me, as an accommodation— that was one of the things they asked is kind of, what did I think I needed in order to make my work life balance better and to accommodate for everything that I was going through. And so of course at that point I was— I had no idea what to tell them, I mean you know I had not been down this road before, I didn’t know what accommodations to ask for. And they actually referred me to the Job Accommodation Network. And so I went on that website and I ended up calling and talking to somebody and found that on the website they actually— you can put in whatever accommodation or disorder or disability you’re looking at, and it will give you back some ideas based upon either your limitations or a work related function. So I was able to then you know come up with the idea of having nap times and a flex schedule and mornings when I’m travelling to work, things are not going the way I planned, maybe stepping back and— you know just if I had to pull over on the side of the road, just let them know I’m running behind or whatever. It was kind of a process you know, some of the ideas that I had they were not completely on board with. And so we had to kind of work together and come up with something. Some of my accommodations I have now such as scheduled naps is really difficult for me with everything that I do during the day. So I have a hard time actually scheduling that, so or take the route of, when I have a sleep attack— of notifying my supervisor and going through the process so that I can take, you know, 15-20 minutes. And then during lunch I, you know, put up my sign and let them know that I’m going to be “do not disturb,” kind of I’m out of pocket for a little while. And one other thing I think is important to know is that your needs may change over the course of how your narcolepsy changes, because for me, it was one thing three years ago and something totally different now. And so, working with your employer, to go— you know, if you have to adjust that accommodation, go back to them and talk to them— you know most things are not— it’s a very low cost to no cost. Like having a nap space, that doesn’t really inhibit anything for the employer, you know they don’t have to put a lot out— I’m using my own office. I can close the door and I’ve got that space so it doesn’t actually affect them any. So working with them and just knowing that as things change for me I maybe have to actually alter some of my accommodations.
Julie: I think that’s a good point, Nicole. So how has your accommodations or your experience changed over the years, do you think?
Nicole: Well, now that I feel like I’m on a more consistent medicine regimen, I don’t have as many sleep attacks. My issues are more whenever I hit my insomnia cycles and I’m not sleeping and I’ve had an exhaustive day and then I’m up all night. The next day sometimes I’m just a little later coming in. And so just knowing that I can make that phone call or send an email and say, “I need to go back to bed, I’ll update you whenever I get up.” I don’t utilize that too often just because I put a lot on myself, and— and I tend to feel like I’m disappointing the team in the office if I’m not at work. So, I try to push through it, but I’m learning that I need to have self care, and advocate for myself and when I’m having those times, don’t feel the pressure of the job— I have to take care of me first. And so you know now it’s not as bad but I still— I have those periods of times where I may need a day just to— I need to work from home, I’m not functioning enough to get in the car and be safe driving to work. So, you know, some of that is— has changed over the past few years.
Julie: Thank you Nicole. Well Lindsey, we want to get to you but we also want to say hi to Tre! Hey, Tre!
Tre: Hello, what’s going on y’all.
Julie: We’re so glad you’re here!
Tre: Yes.
Julie: Catch us up a little bit with your process, what kind of a role that you’re in and what kind of accommodations you’ve had at work and when you disclosed about having narcolepsy.
Tre: Awesome. I think I’m going to probably work a little bit backwards. Usually, when I get hired, I disclose about my narcolepsy. Never before, never during the interview, like as soon as I get hired, I’m having that conversation with either my supervisors or whoever hired me and explaining it to them, the best way that I can— and kind of bringing up what I need. So currently I work as a paraprofessional, right I’m a special ed associate at an elementary school and also work at a Boys and Girls Club. And previous jobs that I’ve had required different things from me from an energy stand point. I had a job working as a dietary aide in a nursing home. I had a job where I was also a camp counselor, at a respite camp working with special needs individuals as well. And those different jobs required different accommodations for me. The job that I have currently, kind of like what Nicole was saying as far as, like treatment wise, my treatment wise is at a pretty good level right now, so I don’t have as many as like, I shouldn’t say allowed accommodations just like, on point accommodations. But my previous jobs that I’ve had, at the dietary aide facility, after I disclosed I had narcolepsy, one of the accommodations that I asked for is naps. Frequent naps. And it was kind of cool to work there specifically, because it was in a nursing home and they allowed me to kind of, sleep in the empty rooms on the bed, when I had my breaks and whatnot. So I got like an additional break in order to nap. The respite camp job required of me, was— a job that, I needed to be there from Friday to Sunday. So I had to stay overnight. And that interfered with the nighttime medication that I take. When I first got the job I kind of just, shrugged it off a little bit, like, “Oh I don’t need to take my night time medication,” and I quickly found out that that wasn’t the case, ’cause if I stayed up that Friday night trying to take care of my residents and I woke up the next morning without my night time medication I wasn’t able to be like, fully functioning for them, like I needed to. And that type of work it is, I’m having to be alert, literally 24/7 for them. So as I went back after the pandemic, ’cause they kind of closed down a little bit— and they’re like, okay here are our new procedures, you know wear a mask, we’re wearing shields, and I had to say to my new supervisors, I had and I was like, “Hey, I know that I worked here before and I did the nights before but it was always this conflict as far as my medications concerned,” kind of advocating for myself, right. And I’m like, “I won’t be able to do the night shift portion of this job.” However, once I brought that up, it resulted in like a significant pay decrease because I got paid, that whole time from Friday through Sunday, and including the nights. So, from that stand point and the night time medication, I always felt great waking up the next morning and taking care of them and did the best that I could do. But that was kind of like a downfall, if that makes sense, with advocating for myself.
Julie: Thank you, Tre, we’re so glad you’re here. I think it’s important to talk about finding even the right position— [laughs] given different aspects of living with narcolepsy. So Lindsey, do you want to share a little bit about when you decided to disclose? Did you disclose right away, or wait?
Lindsey: So prior to being diagnosed with narcolepsy I was working in outside sales. I made the decision that I was not able to continue with that position, so I left. Worked on medication, kind of got myself to a point that I felt like I could give to a job. So going in, this company that I work for now was the first company I’d ever worked for, while being diagnosed. So I waited until I had a job offer and had accepted, prior to disclosing. And, going in you know I had some accommodations in mind, but I didn’t know a ton of what to even ask for. I knew what my struggles were, but I didn’t know how to fix them. And someone actually pointed me in the direction of Job Accommodation Network, as well. But one thing I had to learn was that you know, they kind of morph over time. What I needed when I first started is very different than what I need now. Both with my position as well as, you know, how I’m doing. My medications when I started was very different than what I have now and I am able to be a lot more functioning. So you know I have built relationships both with my supervisors as well as some of the ones in HR, as I discovered things aren’t working as well as they were previously, you know we go back to the drawing board, we brainstorm ideas, we change things around. So that I can work the best I can and be as productive as I can with my work day.
Julie: Along those lines, you talked about working on something that’s a little bit less formal of an accommodation, but someone pinging you, can you tell us a little bit about that?
Lindsey: Yeah, so you know obviously I have my accommodations through HR but some of them rather than going through HR I would work with my supervisor directly, and one of the things that a supervisor actually recommended to me was, having someone— especially when we were in the office, if I am kind of getting in that dazing out stage, just pinging me. Early on I wasn’t very open with disclosing to my coworkers so I had a specific coworker that would ping me if she saw me just kind of dazing out. And—
Julie: What does pinging mean? Can you explain that a little bit in case someone doesn’t know the term.
Lindsey: Yeah, so we have an internal messaging system and she would send me a message and when that message gets sent there’s a little ding just like with email, and that would help me wake up. And you know, that was kind of my reminder like, hey either take time and go take your nap or you know sometimes just hearing that sound would kind of help bring me back. So, it helped me be more aware of when I was having those moments.
Julie: For other people, Nicole, or Tre, have you had any sort of informal— [laughs] —support from colleagues or supervisors like that?
Tre: Yes. So when I worked at the dietary aide facility I kind of realized, I also have like a dual diagnosis of ADHD as well— so there’s this weird thing of, when I’m experiencing my symptoms, specifically like the excessive daytime sleepiness— sometimes all I need is like maybe some extra stimuli, right, like, if the room is kind of low, maybe low light, there’s not a whole lot happening there— maybe all I have to do is wash dishes, right. And there’s just nothing happening, I think that’s more susceptible for my symptoms to come on, right. So, I think I tried to speak to my HR at the time, and I found it so weird to tell her like, hey I just need somebody to talk to me. I just need somebody to be there, right. And to engage in a conversation with me or— ask me to do something different, these things that like, you can’t really put on paper, I guess? Like, how do you ask somebody to be— [laughs] — just like a friend to you at that moment in time. It’s like, I understand you’ve got a job as well, you’ve got some residents to take care of, but please talk to me. Like this is— [laughs] I’m kind of struggling here. Talk to me, tell me anything. Tell me anything. Random, I need it. Kind of, there’s also a phenomenon called like body doubling which I think is an attention deficit term as well, it’s just like being able to focus on the thing you need to do, with somebody else in the room. So I think that one thing, just having somebody else there— is extremely, extremely helpful.
Nicole: I do— I have the same kind of thing, there was an individual I had working with me that recently retired, and sometimes I would just get up and go in her office and be like, “Just talk to me.”
[Tre laughing]
Nicole: Just, be here. Just, you know. I mean, chat five minutes, whatever. Let’s lock the building, you know so— walk outside, get some fresh air, come back in and be like, okay. I got this. Let’s get back to work.
Tre: Yes.
Nicole: It was nice having that sort of somebody who was, you know, a coworker and a friend who understood and saw me every day and knew that I wasn’t just tired because I’d been out late the night before or something, I was, you know— it was legitimate. and it was just nice knowing you could go to somebody who got it, you know and didn’t say, well just go get— go home tonight and get some rest. ‘Cause none of us want to hear that when we’re experiencing what we experience, so. It’s just nice to know somebody was understanding, and helped me.
Tre: Yes. I think when it comes to that accommodation conversation, that specifically, I think is really hard to ask for. ‘Cause it doesn’t feel so— just like Julie said, it’s informal. I like this facet of the conversation, a lot, ’cause it feels more— based around empathy, right. If we think about anybody else who has some type of disability or like something that is preventing them from doing what they need to do, some type of boundary of some sort— a lot of it, especially when I work with special needs individuals— it really is like empathy first. Like I get when my students are going through something or, having a moment, instead of just being like, yo, knock it off. I need to understand what’s wrong with them. And accommodate them accordingly. And a lot of times in the work place depending on your job, that softness, that empathy is not always guaranteed. Because of the focus on the work part. That you’re here to do a job, and—
Nicole: Yeah, not so text book, in writing, this is your accommodation. It’s x,y,z you know like, some leeway to understand that we’re people and we don’t know from moment to moment exactly how we’re going to feel and what we’re going to need and we can’t always document every aspect of it. And know that, okay does this fit into the accommodation? Can I do this, am I okay to go this direction? You know, it just, being there in that moment and turning to somebody and being like, this is what I’m experiencing right now. Can you help me?
Lindsey: I know for me, our process involves you know forms that I have to go to my doctor, sit down with. So some of these accommodations— that process does take time. And sometimes I don’t have that time to wait to get these. So working one on one with a supervisor has allowed me that flexibility, to even see if this accommodation would work, prior to going through all that, as well. And some of these, you know, I don’t want to go through that whole process if it’s something that is not going to work for me. So that you know I think learning the difference between those formal accommodations as well as, you know, kind of these one-offs you know just working with our supervisor directly, I didn’t realize, you know, you could have both. And that was a really big learning moment I think, for me.
Julie: I think that really highlights why this discussion is so important! Because, every job is different, and it is— kind of even sounds like a multi-layered process of finding ways to work and every person with narcolepsy is different. So, when you guys were talking about the stimulation I can both really understand that, but then there’s also a tired I have— which is so tired that I’m on the verge of having cataplexy, and so when I would be walking to my car and I’m in that zone, all I would think is, please no one talk to me. No one talk to me. ‘Cause any— especially a friend, if I saw a friend on the way to the car, I felt like I was going to collapse. And so, you know, it’s— but I also know that tired where it’s just like, could actually be turned around, by talking to someone. But then there’s also a tired where I’d be like, “Oh gosh I hope I don’t see anyone I like,” [laughing] because I just need to go nap and I need to nap now. Before it turns into cataplexy. So it’s just really, really interesting from person to person. So as much as we’d love to like, you know, say there’s one frame work for just getting the job and the accommodations and it’s all going to work out, like— so much of it is more individual.
Julie: Lindsey, you’d talked about this being a process, and I think we should highlight that a little bit more, possibly— and like, how that can— you know, basically set an expectation that it is going to be a process— [laughs] and, we have Nicole here who works in HR so I don’t know if you want to give, kind of— a perspective on, why is it a process? Not that you represent all of HR professionals around the world, but— why is it a process and what goes into it on an HR perspective.
Lindsey: Right. So, you know in my role in HR I don’t— I’m not our ADA coordinator, so I have understanding of it, but I will say that it does differ across every employer. So what is the process at one place is not necessarily the exact same process elsewhere. However, it is the same basic thing of, you know you have to meet with your doctor and have some kind of documentation and the important part of it is the employer needs to have that so that they understand what’s going on and they don’t think you know, this person’s falling asleep at their desk, or— you know, of course we’re talking about narcolepsy and sleep disorders but if you’re falling asleep at your desk, are they wondering— are they doing drugs, are they, you know, drinking during the day? What’s going on with this person? You know. So, having that accommodation, it’s an open communication with your employer, and you— so that they have an understanding what you’re dealing with, what you’re going through, what you need— and that’s why that process is in place, but it also— it, you know from a personal side, not HR, it’s somewhat of a protection for me. It doesn’t mean that I can slack off at work or not do my job and then say, but I’ve got an accommodation, I can do this. I mean I still have to meet the needs of my employer. And do my job, and do it effectively, or I’m not going to have that job. Just because I have the accommodation doesn’t mean that I can do whatever I want to do. I’ve actually met some resistance with people at times where they say you know, you’ve got this accommodation so you know you can go do that and I can’t and I’m like, well—- not really how that works. And I would trade narcolepsy for anything if I— you know, I don’t want this accommodation, I don’t want to be going through all this. But it is important that you do have that on file with your HR office, and you know, if it’s to an extreme that you need something. Now, before I got to this— the point where my narcolepsy had progressed, so drastically— I didn’t have anything on file, I didn’t, you know, nobody really knew what I was dealing with. But when it got to that point that’s when I made that decision, I have to actually talk to somebody because I need to know that we’ve got documentation of this. Just so that I did not run into any problems.
Julie: Yeah, I was going to add that at my job where I— we worked on getting a wellness room, so I could take a nap— it was such a long process to find the space and it was really frustrating to me because, I needed to nap every day, you know it wasn’t like, oh in three weeks I need to nap. It’s like, I need to nap every day and— there just seemed— [laughs] —it was frustrating. And actually it took my supervisor became my best advocate, and she ended up having to escalate it to her boss and then her boss’ boss. And I’ll never forget that man came over to me and said— I didn’t know him, he was really high up at the organization and he just walked over to my desk one day and he said, I hear you’re not getting what you need. We’re going to take care of that. And— I was like, okay thank you. And by getting some urgency on our end of like my supervisors, we were able to increase the speed in which HR dealt with it and it just felt unfair to me ’cause I started to realize like, what if you just didn’t have a ‘fridgerator for someone’s like, medication that’s like life altering. Like you just can’t just not do it for three weeks while you build a fridge, you know, or pick out a fridge at Home Depot you know, that’s not how it works. And they just weren’t taking it seriously it felt like, and the urgency behind it. And then once we did get the room there was all sorts of issues with like, whether the room was locked or not, and then there was a lot of other people using the room because go figure, in a building of 600 people more than just one person was tired and wanted a quiet space. So they ended up having to create two rooms. So I think also just like the real human nature behind some of this, like finding a supervisor like I had, I had no way of knowing when I applied for that job whether or not she was really going to be so understanding as she ended up being. I just lucked out, in a way on that. But I don’t know, Tre, or Lindsey, did you guys have any other things about like, it being sort of a process? [laughing]
Lindsey: Yeah. Like I said, this was the first job I had even applied for accommodations. So, I went, I got the note from my doctor— but then my company requires a specific form, with specific questions. So then, sending that to my doctor— and them actually understanding what we spoke about, and what’s on that form. So for me I found out it was easiest to do that at appointments. So the appointments, you know when I need to do that, we actually book a longer appointment so we can go through that together. Because, some of those first attempts at that there was this back and forth. But you know us sitting down together, doing that, and then have— you know, obviously waiting on HR to come back with what they can do— it did take longer than what I was expecting going in.
Nicole: Even me being in HR I had that same experience. It was like— and I’m right there down the hall from the person, but yet— I had to wait my turn, so to speak. Which is frustrating when you need the accommodation at that point.
Tre: Yeah. It’s a process ’cause it’s not like your narcolepsy is on hold, right. It’s not like you can just say, you know what, for the next two weeks I don’t got it, so like, you don’t got to work that fast. I’m very glad, Julie, your situation— I’m glad they were able to like escalate that for you, that’s amazing. When it came to my process, just like Lindsey, just like Nicole, once again it just took a while, I think. If anybody could take anything away from this, it’s that it’s not going to happen the next day. I didn’t know the language, right. I think I didn’t know what to say. They were like, okay what kind of accommodations do you think you need? I said I don’t know. Like, I looked at my HR and said, I don’t know. Then on that point that Nicole is saying, then my HR looked at me like— like do you, is it serious enough? Like why don’t you know. Like why don’t you know what you should— what your accommodations would be, if you had this sleep disorder, like is it real— so you know having her like, give me that face, I was like, ouch! You know, that kind of hurt. So going back to my doctor and then having that conversation as well. Kind of like Lindsey just— there was a point like, my doctor was the one that’d be like, so what do you think? Da—da-da-da-da. And even at that moment in time, it begged the question, was my treatment like that effective. It brought to light something new! I learned that I had actually way more sleep attacks than I thought I did. I also want to say, advocating for yourself is great, however sometimes it’s really hard to and it can sometimes be discouraging, and I think it’s a privilege to even like, get an employer to be like, let’s put a bench, right. Or even in your office like let’s put something here, because not every job is like that. I’m fortunate to be working at a school, and that the other jobs they had beds, but what about the people who are shift workers. Or who work fast food, or work any other job to where that accommodation might not be— that they might not be able to do it. And hopefully like employers can see this, and be like, “Yo, that is a real thing.” And, having that conversation with yourself, as somebody who is an employee, but also like a person first. And what could work for you.
Julie: I think that’s a really important point. And there are a lot of situations that aren’t really super conducive to a full like private room with a bench. Also and my dad pointed this out, my dad was an employment lawyer, and he said the kind of accommodations people are asking for with narcolepsy are not usually all that expensive. If you can find some sort of room that maybe isn’t used all the time, even a closet. You know, something where you can put a yoga mat down, or an empty office. These aren’t asking people to usually build like a whole new building or, you know, something that’s so unreasonable. Working with the space. But of course, like you said, Tre, that’s not always the case, either. I know probably a lot of people use their cars, like the second job I had, the space they found for me did not have a lock and someone did walk in on me and I hated that, and so I just chose to use my car, even in LA heat. I just found that the best thing I could do. So I did want to move to one other topic which we’ve discussed somewhat, but— about finding work possibly that helps with your specific energy levels, and you know, I know at one job I had we had a variety of tasks, some of it was like data entry and some of it was very like— like writing these grant proposals, which took a different part of my brain— and I actually found that combination really helpful, to go between those two things. And I was curious for other people and I— you know, I guess I didn’t really know that going into that job, how much I was going to enjoy some of the different tasks I was going to have in that job. But obviously, you know, depending on where you are in your career, you know the option of choosing a job isn’t always possible but if you can start to think about what roles you’re going to succeed in. And what drives you, like I know some people like it sounds like Tre, I imagine you’re a little bit more extroverted than me because— [laughs] dealing with kids all day sounds like it would take all my spoons for an entire week— [laughs] so— but you know, what have you guys found, anything about like how to deal with your energy levels and what kind of roles or duties you take on?
Lindsey: So kind of, I guess two parts for me, not only did I look at you know the role itself, but also the company. Like I said, I had you know been out of work trying to get myself situated prior to going back. So, when I did start looking at new opportunities I looked at— for companies that were more flexible. You know, ones that didn’t have this very rigid culture. You know, I was not going to be one, I knew going in, that would do well in that environment. So also looking at the environment with the company itself. And I actually went through and made lists of what I was good at and what gave me energy. So looking at roles you know where I was able to do that. For me one of the big things was not having the very same thing every day. Having that variety. Having different tasks. That was something that really helped me to stay awake and cognizant and to have that energy to do the best that I could.
Tre: I’d say, um— yeah I don’t know if I have any more to say as far as the type of work I do. I feel like I never grew up. I got out of high school, and learned just how much I wanted to be a part of a community. And kind of give back to the kids around me. I had a lot of dope adults— I had people in my life who helped get me through, who helped wash my clothes, like— it was really cool. And I was like, okay cool, I’m going to give back in that way. And then learning just throughout life right, just oh, this job is probably not the best for me. Sitting at a desk is probably not the best for me. I am a tad bit more extroverted so yes, seeing all those kids, it gives me energy. They give it to me I give it back to them, vice versa.
Julie: Nicole, anything in your job as far as, you know, managing your energy levels, or—?
Nicole: For me it’s just as simple as, like, there’s just times I have to switch tasks if I’m in front of the computer for way too long. Sometimes I’ll just get up and, even though it’s not part of my direct responsibilities I just go to the file room and just file something, I mean— I’m standing up, I’m doing something, you know, it’s just moving around. Just changing the pace of the day. ‘Cause I can’t sit in front of a computer for, you know eight, 10, 12 hours, and not fall asleep. So I just have to get up and move. And do something different.
Julie: Yeah. Even working for Project Sleep, some of the tasks, like mailing packages is easier for me to do when I’m tired— [laughing] however, I do worry sometimes like, did I put the card in the pack— the thank you package for someone, or— did I put the right things in the package? A little bit— [laughs] but it’s still like a manual task that’s easier for me to do when I’m tired, so. Yeah I think that’s really important to think about our energy levels.
Julie: This has just been such a special conversation, I just am so thankful for you guys, and for everyone that’s tuned in. As far as disclosure we just wanted to remind people you know, when you’re preparing to disclose, be prepared to disclose your diagnosis and the specific examples of reasonable accommodations that you’re looking for. Hopefully our toolkit will be full of so many options that it’ll be like, you know, easy to choose and find what will work for you. And also a doctor’s letter that should reinforce more about the condition, and hopefully go along with what you’re saying you need for accommodation. And, yeah! Hopefully today we talked about setting expectation, this definitely is a process. I did forget to mention this idea of making it more transactional— there are people in our lives we want to understand on an emotional level, and really get it and come up to you and be like, oh my god I get it now and narcolepsy’s so serious and you’re so amazing for overcoming adversity. My feeling having worked with a few different employers, was— as far as my HR relationships, is trying to think of it as more transactional, like here’s what I need to get and not always think that I’m going to get some sort of a huge emotional response. But what I need to get, my goal out of that is the accommodation. So, I think that can be helpful for our own sanity sometimes to think of some relationships, such as with an HR, as more transactional.
Julie: Then you know just for resources, you know, Social Security Administration. We did not talk today about any disability as far as Social Security disability and it’s such an important area. I know the Hypersomnia Foundation has some really incredible resources as far as that goes. State disability Law Centers can be really helpful. Your Human Resource Department, and I know Lindsey and Nicole both mentioned the Job Accommodation Network. So hopefully we can put together this toolkit which will be another great resource. Always important to mention the different organizations, they all have great resources. Hypersomnia Foundation, Narcolepsy Network, Project Sleep and Wake Up Narcolepsy. And there are incredible organizations around the world as well. We have, I think 31 different organizations mentioned now on our World Narcolepsy Day page that are co-leading World Narcolepsy Day. I want to say a huge thanks to our panel today. You guys are incredible. I think with that, we’ll go ahead and say goodbye for now.
Access the toolkit for this episode here.
