Jennie Brooks, host of the Unstoppable Together podcast chats with Booz Allen instructional designer, Chris Lewis, about his journey with narcolepsy. They discuss his struggle to get a proper diagnosis, how he navigates accommodations at work, and the importance of sharing his story and building community.
Jennie Brooks:
Welcome to Booz Allen Hamilton's Unstoppable Together Podcast, a series of stories that unite us and empower each of us to change the world. I'm Jennie Brooks with Booz Allen Hamilton and I'm passionate about diversity, equity, and inclusion. Please join me in conversation with the diverse group of thought leaders to explore what makes them and all of us unstoppable. Hello everyone and welcome to the Unstoppable Together Podcast. I'm your host, Jennie Brooks, and today I'm joined by Chris Lewis, instructional designer on Booz Allen's talent development team about his lifelong journey with narcolepsy. Chris, welcome to the podcast.
Chris Lewis:
Thanks Jennie. I appreciate it. It's gracious of you to have me and I look forward to speaking today. Thank you.
Jennie Brooks:
I'm really grateful for your joining us for this important conversation. Can we start by your telling us about the narcolepsy condition and your own journey to diagnosis?
Chris Lewis:
Absolutely. And I noticed in the introduction you said about his life journey with narcolepsy. So I'm going to say it's been a life journey with depression and I was recently diagnosed with narcolepsy and it's typically the case. It happened usually around age 50. I turned 49 and was diagnosed last year at 48. And if you know all the steps to take, it's about a year long process before you start to feel better. So I have been feeling symptoms since middle school around age 13, 14. Always treated it as depression because that's how the symptoms manifest themselves, tiredness, fatigue, irritability, just sleeping all the time and it's really a challenge. So I wanted to go ahead and give a short description. I appreciate you asking me to do that because when I mentioned narcolepsy to somebody, they said, Oh, so you're narcissistic. And it was a teachable moment.
So narcolepsy is a neurological disorder, so it affects the brain and my brain and folks with narcolepsy don't produce enough histamine and histamine is important because it's a wakefulness promoter. And so if you have a bee sting and you're allergic to that, they usually give you antihistamine and it makes you really tired. So the brain can't regulate your sleep wake cycles. Typically, it takes an hour to an hour and a half for folks, healthy people to get REM sleep, get to that stage, it takes me two minutes. So I skip all those stages in between and I have insomnia and sleep apnea, which make it more of a challenge.
And sleep attacks, brain fog are some of the symptoms, disrupted nighttime sleep, I've had sleep paralysis, some folks have hallucinations. That's the type that I live with. And there's another type that I think the media portrays where you see people falling asleep instantaneously. And that's called,
Jennie Brooks:
Right.
Chris Lewis:
That's called cataplexy. And what that means is that it's triggered by emotion such as laughter and folks will lose muscle control, for instance, dropping a soda can or passing out. And so it's important to know those two differences. And I think the figures show that one out of every 2,500 people have it. And my intent on this is to inform people, especially kids that they're diagnosed with depression. If I can save somebody 35 years of what I went through, that's worthwhile to me.
Jennie Brooks:
Wow, Chris. So the image you portray of someone sort of instantly falling asleep is the single note sort of view that I personally have always when you talk about narcolepsy, I think of that particular symptom. But what you're describing is that's just one of a number of ways this disorder can manifest. That's right.
Chris Lewis:
Right. And I am fortunate enough to not have cataplexy. I think it's rare and they deal with the same conditions except they have the muscle weakness where it can be portrayed as oftentimes you can pass out.
Jennie Brooks:
Right. And then you described in middle school having symptoms that, so if you're not just falling asleep immediately you experienced symptoms that were along the lines of depression and anxiety. So that's part of the challenge and the diagnosis is it shows up and presents in different ways, but it may be some time before you really get the right diagnosis down.
Chris Lewis:
Right. And so I noticed that in middle school I hit a time in my life where I instantaneously got tired and would have to take naps every day for hours after school and I didn't know what it was. And I served in the Marine Corps, got out and I was diagnosed with major depressive disorder, anxiety and I was addressing those things and I was up to 14 meds that it got to the point where there were meds that were addressing the symptoms but not the root cause. And I had to take meds to address the effects of the meds that were producing negative effects. So it's really important to get an accurate diagnosis. And I think in the medical field it typically stops when you get diagnosed with sleep apnea. You hear a lot of stories about folks being on a CPAP machine and it's a game changer for them. It didn't do anything for me. It kept me a sleep, prevented me from waking up. Because on my first sleep study I woke up 80 times in one hour. And so,
Jennie Brooks:
Wow.
Chris Lewis:
With narcolepsy you have to get a specific test and what they do is you'll take the regular test for sleep apnea, an overnight test, but then a morning test where they'll wake you up at six o'clock, keep you up for two hours, make you take a 20 minute nap, get you up, stay up for two hours. And they do that for four or five times. And they told me they stopped on the third test because I hit REM in two minutes.
Jennie Brooks:
Wow, that's fascinating. Chris, tell us a little bit about what it's like through the workday for you then with narcolepsy.
Chris Lewis:
Well now that I'm diagnosed Jennie, I feel like I've been given a second chance. I feel like a new person. I have energy, but during that year long process and before that it was torture. I had brain fog and so I'm introverted and virtual meetings were a challenge because you have to stay awake, there's always yawning and you have to, I felt I had to cover my face and things of that sort. But it was a challenge focusing, it was unbearable at times to the point where I would have to just sign off work and just get under the covers and take a nap. And that compounds things because you have to work longer, you have to make those hours up and I just was hopeless and didn't know what to do. And so that's how it affected me during the work day.
Jennie Brooks:
So tell us how we can support people, colleagues who have narcolepsy, however it's manifesting. What are some of the things we can do to support people who have this disorder?
Chris Lewis:
I think transparent, open communications and there's a measure of trust that has to be established and just getting to know like, for career managers or job leaders, I have the two best in the world and they're the epitome of getting to know your people instead of your performers. Have conversations with them and they'll eventually open up. I got to the point where I was afraid my performance was going to go down and that would be reflected in my work. And so I had reached out to the accommodations team and talked with them and I would suggest that folks do that as well. They keep things very private. And I went a step further and I told my career manager and job leader what the discussion was about and they just knew that I would be getting accommodations, but I really wanted them to understand so I could, the more understanding they have, the better.
And so with that, we set up a chat channel where I let them know if I need to take a break, the accommodations were classified as two 30 minute breaks and they authorized naps. So I'll let them know about that and I'm usually able to push through the day and do it after work, but that's also time that you have to make up. So I try to get my naps done. I get up at 4:30 in the morning and usually I'll take a nap before that, after I wake up before work, get online about 6:30, 7 o'clock. And it was so horrible that I had to take a nap 45 minutes after I woke up because I was just so exhausted. And so those are some of the ways, if you have open transparent communications, folks will talk with you.
Jennie Brooks:
Yeah. I'm struck by so many things. One is that you shared that you're an introvert, so I have to thank you for having the courage to share your story in this way though I find it to be very courageous. And two, so many people have been through so much over the last few years and I think that in speaking with a lot of people, right, there are common symptoms, whether they tie back to a narcolepsy diagnosis or something else or just sort of the state that people are living through these days. So what would your advice be to a person who's listening, who is suffering through some form of these symptoms or isn't sure how to navigate that conversation in the workplace around pursuit of just supports that they need, accommodations that they might need regardless of what the diagnosis itself is?
Chris Lewis:
I would encourage folks to explore, just start with Googling. Don't get into analysis paralysis though, where you find that you quote, unquote have four other different things that you concentrate on. I provided a list of resources and I think they'll be in the description where there's a self test that you can take and it's called the Ullanlinna Narcolepsy Scale. I would encourage folks to take that and bring that to your doctor and don't let people convince you that you're crazy. So push those conversations with your PCP, ask for a referral to a sleep specialist. The firm has outstanding benefits, so I would encourage folks to take advantage of that. I was on 14 meds and I just did a detox and I'm down to the four meds now that I take for narcolepsy and I'm 44 pounds lighter. I would encourage folks to know the meds and check the interactions with other meds that they're taking and just push those conversations with your doctor. If you're not getting the answers you want, find another doctor. That's what I did and I started getting answers when I started being a self advocate.
Jennie Brooks:
Thanks Chris. What advice would you give to those who might be a career manager or lead a team, lead a project team of someone who comes to them and requests support for a diagnosis like narcolepsy?
Chris Lewis:
I would encourage just transparency. And the folks I've talked to have always been empathetic and caring and they may not know the answers, but every time I've heard that they've always followed up with, I'll find somebody that can give you an answer or I'll get back to you on that. Get to know your folks a little bit more. And my career manager, job leader, they're hands down, excellent examples of that. They've always been there for me. They're understanding and encourage them to talk to the accommodations team.
Jennie Brooks:
Awesome. Chris, I want to thank you for sharing your journey with us and I think it's so important, to your point, people might be suffering through this diagnosis and because there might be fewer people in an organization that opportunity to seek help or talk more broadly about it, there might be concerns or fears or anxieties around doing so. And I just really appreciate your sharing your story for those of us to better understand what comes with narcolepsy and how we can support one another through it. We leave our guests some free space at the end of every podcast. What would you like to share with those listening today?
Chris Lewis:
First of all, thank you for the opportunity to speak to this. I think it's an important topic that a lot of folks may not know about. And so I guess I'll answer that Jennie by framing it with the firm's core values. Exercise your ferocious integrity by holding others accountable, but also yourself. Don't rely on somebody to follow up for you or come to you and ask you questions. So be proactive and search those answers. Take that narcolepsy scale and again, look at the resources and bring that to your PCP. And if they don't have time for you and they're rushing around, I'd encourage you to find another one and start your journey over. You have to be your own advocate and you build your case and just don't back down from it. You have the proof that's a gut feeling, you're probably onto something and don't let anyone else convince you differently.
Exercise your collective ingenuity, find the problem and solve it and refer back to the steps to diagnosis. If you have those, it'd probably be a year before you start feeling better, but you will start feeling better and it is a game changer. I guess I'd like to end with, the big thing is to find your support network. I joined an online group on Saturdays and they informed me about all these meds and I brought them back to my sleep doctor and he got me on these meds and so that right there, it was a big help. You don't have to attend them all the time, but get in there and be proactive and ask questions.
Jennie Brooks:
Thanks Chris, we appreciate your time with us.
Chris Lewis:
Thanks Jennie.
Jennie Brooks:
Thanks for listening. Visit careers.boozallen.com to learn how you can be unstoppable with Booz Allen. Be the future. Work with us. The world can't wait.