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Working with Narcolepsy

Today’s topic is Working with Narcolepsy. We invited three people with narcolepsy to join us during our Denver conference to talk about what it’s like to work with narcolepsy.

Meet our participants:

Bonnie Smith* is from Michigan, where she is a pharmacist with a large health system. She has been in her job for almost 17 years.

Megan Hoover is an immigration services officer for United States Citizenship and Immigration Services, part of the Department of Homeland Security. She has been there for six years, four years as a clerk and the last two years as an officer.

Bridgette Snyder, from Hawaii, works for the Department of Defense as a Mandarin Chinese language analyst. She has been working for the DOD as a civilian for two and a half years. Before that she served in the Navy on active duty for 10 years.

Q: Does narcolepsy affect how you approach work, where you choose to work, what you’ve chosen to do?

Bonnie: As a pharmacist, I’m kind of limited. I actually started exhibiting symptoms in 2011 and it wasn’t until 2012 that I sought help because I was having a hard time driving to work. I thought I was actually hypoglycemic but I had multiple sleep studies and found that I had narcolepsy.

Bridgette: My situation is kind of the same. I actually got diagnosed with narcolepsy while I was working, so it wasn’t that I chose the job that I chose the job that I have because I have narcolepsy.

Bonnie: How long have you been symptomatic?

Bridgette: My symptoms actually started when I was 14 years old. I had very severe cataplexy that people blew off as being a clumsy teenager.

Q: Megan, tell us about your job.

I started Federal employment in 2008 and in early 2009 I was starting to get diagnosed. Federal employees have a one-year probationary period, and it was during my probationary period that I was getting diagnosed. I started the reasonable accommodations process and I was terminated. So I filed for Equal Employment Opportunity, or EEO, protection. It took a little over a year, but I came back and got some reasonable accommodation as a clerk.

Since then I’ve become an officer and now I’m really fighting on performance because we are a production facility and although my quality is 100%, my short term memory lapses, so I recheck things three or four times. I deal with national security. I want to make sure that I did it correctly. I know that my performance level is going to be rated ‘not meeting expectations’ so I currently have another EEO case pending.

Q: Bridgette, can you talk a bit about your accommodations?

Bridgette: I work a flexible work schedule. Basically I have a core hour that I have to be at work. Other than that, the 8.5 hours that I am there is more or less up to me. I have to be there from 10 to 11 a.m. so if I have an early morning and I can come in, great. If I have a late morning I have to call. That’s been extremely helpful.

The other accommodation that I have is a place to nap during the day. I have to use my lunch break in order to do so, or make up the time, however it is available for me to use during the hours that our Office of Health and Human Service is open.

Those accommodations work reasonably well for 90% of the circumstances that I have. The only problem that I run into is when I have to go to classes. Training schedules generally run from 7:30 to 4:00 and there is no room for a nap when I need it. Lunchtime might be too late, or it might be too soon. So that’s really where I kind of struggle.

Q: Megan, Bonnie, what accommodations do you have?

Megan: My accommodations are flexible schedule, use of annual leave and leave without pay. We’re really lucky. We have core hours on Wednesdays from 10 to 2 otherwise 6 am to 6pm as long as you get 80 hours in in 2 weeks.

Bonnie: I didn’t have great luck with mine. Once a month we have to carry a pager 24 hours a day for a week. I was even told that if you can’t carry the pager, you may very well be terminated. But luckily I have another coworker who volunteered to carry it between the hours of 9 pm and 6 am for me.

And then my boss told me, “Oh I hear your reasonable accommodations have been lifted and you can carry that pager again.” And I’m panicking, so I call the doctor and have him re-fill out everything and then I called the officer in our benefits and she said there had been no change. It’s still in effect. My boss just lied. So really fight for those reasonable accommodations cuz they’re your right.

Q: What has the process been to request accommodations?

Megan: We have a problem with our reasonable accommodations committee being local. There are four people in mission support with no medical training, most of them have no disabilities or no family with disability, and they make the decision.

Bonnie: You’re absolutely right. Unless someone is familiar with a disability or has some kind of relationship with it they don’t understand anything about it. I work for a health system. I’m surrounded by physicians and pharmacists and nurses and I’ll tell you what, they don’t understand.

Megan: I have a second line supervisor who has a nephew who has narcolepsy so she thinks she understands, and I’m like, no. None of us are the same.

Bonnie: You almost have to educate them, but some of them are so arrogant. They think you take a pill and you’re all better and you can function like a normal human being. I never feel normal.

Bridgette: This is where I feel like I kind of stumbled into a really good place. My supervisors were actually great advocates for me. They saw firsthand what it was like for me to go from undiagnosed and untreated to where I am today and it was a complete 180.

Q: Are there issues that come up with your co-workers?

Bridgette: Having to explain to people that meetings around my nap time are not going to happen, which usually results in me having to explain narcolepsy to them.

Bonnie: You must explain it well because when I try to tell people, they’re just like ‘oh, yeah, I know what it’s like to be tired.’

Megan: Oh, I hate that.

Bridgette: I have run in to the occasional snarky comment, but I’ve learned if they decide to say something snarky, you have to not stoop down to their level.

Megan: I’ve gotten in trouble for talking about narcolepsy at work. I try to educate people about it when they ask but someone complained about it.

Q: If you were to go and look for another job, what would you look for in an employer?

Megan: Federal employment is probably the strongest option for narcoleptics because of the protections of union EEO, especially if you can get through that first year. But also you can come in as Schedule A – having a disability – then you have more protections during your probationary period.

Bonnie: Well, I actually have an interview for a second job and it’s working at home.

Megan: I tried working from home but found it difficult because my concentration lagged when I was home alone. I think for some people it’s great. I know one person who has narcolepsy and she does great at home. Myself, I didn’t.

Bridgette: For me, I think the big thing would be having an open mind. Again, there is so much prejudice out there and preconceived notions about people with narcolepsy, but if you can walk up to somebody and say ‘hey, this is the condition that I have and can I explain it to you,’ without them going straight to the same old stupid jokes, then that’s somebody that I can work with.

Megan: I’m actually hoping to go to rabbinical school. I know that will be a challenge to go through a five-year intensive program with a year in Israel, but for me, I think it would be a good fit because you can be an advocate in the community, especially for non-profits, and you’re hours, although you’re on call 24 hours a day 7 days a week, you can set you own schedule, except for Friday night and Saturday services. So for me, rabbinical school or chaplaincy in hospitals is what I’ve been looking at.

*name has been changed to protect her identity.