Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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Tenacity Got Me Accommodations for DSPS

by Elyse

Good evening everyone, this is my DSPS story. I'm in Virginia, U.S.A.

I've known I was an extreme night owl pretty much all my life. I'm a historical fiction writer, and I write best late at night into the wee hours of the morning. (Now I know this is called my wake maintenance zone.) So when I searched for my first full-time job after grad school, I was delighted to find an afternoon/evening position in my alma mater's library. For more than eight years, I happily wrote and researched late at night, slept till noon, and worked my day job of 1:45 to 10:15 pm, except for intercessions, several weeks a year when the university's library closes at 6 and I have to start work at 9:30. Those weeks are miserable, but I tough it out.

Then, last September, my supervisor informed me that I would have a new work schedule: permanently 10:00 am to 6:30 pm, five days a week. I had told this supervisor again and again over the years that I was unable to work mornings, that if my hours ever changed, I would have to find another job. I explained my symptoms in greater detail and pleaded with her to reconsider the schedule change. Hadn't I always done good work? She didn't care. I could be at my desk at 10:00 am sharp, or I could quit.

Finding another job for which I was qualified; that paid a living wage; and that didn't require morning hours proved more difficult than I had anticipated. I also need to remain in public service in order to qualify for student loan forgiveness after 10 years. I grew more and more frustrated and depressed. In spite of the fact that I'd described my symptoms--including being so exhausted and "out of it" that I was afraid to drive--I knew my supervisor didn't "get it"; she didn't understand what an enormous difference coming into work less than four hours earlier made to my quality of life. I started researching sleep disorders and concluded that I have Delayed Sleep Phase Syndrome.

I discovered that DSPS qualifies as a disability under the Americans with Disabilities Act, and that my employer was required to provide me with "reasonable accommodation." Most of the year, the library was open till midnight; it wasn't as if I was asking them to keep the building open later just for me. 95% of what I do can be done any time, and other 5% can be done in the afternoon. I emailed my Human Resources Department to ask who handled such disability claims. They never answered my email. I think they were hoping I would drop it, but I found the ADA Coordinator's name on my own and contacted her. She was sympathetic, but she couldn't help me until I had an official diagnosis and a doctor's note.

The next thing I learned: at least in Northern Virginia, it takes a very long time to see a sleep doctor. I called more than one, but the answer was the same: it would be several weeks before the doctor could see me. The wait was horrible. The more weeks I was sleep deprived, the worse my symptoms got. All the time, I doubted my self-diagnosis. Was I just lazy? Crazy? While I waited, my supervisor deigned to allow me to use 1-2 hours' personal leave some days to come in later, thus burning through most of my leave. She refused to let me use sick leave.

Finally, the day of my appointment came. Online I'd read such glowing reviews of this doctor, a neurologist specializing in sleep medicine. I was disappointed. He immediately recognized my DSPS, but he was sure he could cure it by having me take a stimulant during the day (Nuvigil) and by my doing a more extreme version of what I was already doing at night: taking melatonin 4 hours before bed and limiting my exposure to light during that time. He was miffed when I doubted that this would cure me.

Through my HR Department and and their outside contractor, I got a month's disability leave while I attempted to shift my schedule by following the doctor's regimen. The Nuvigil didn't work, so I quit using it. The nighttime rituals seemed to be helping. By the end of my leave period, I could get up at 9:30 and be mostly functional. But then I returned to work, and my symptoms got worse again. I think it was because staying at home reading takes a lot less energy than driving and enduring a toxic workplace. I've also had the same experience when I tried to shift my schedule on my own: a new thing will seem to work for a while, and then it will stop working; my natural-if-abnormal circadian rhythm reasserts itself.

I made another appointment with the sleep doctor. Perhaps he was having a better day this time. He believed that his treatment wasn't working. "You're hard-wired to the late schedule," he said. "There's nothing more I can do for you." But there was. Fortunately, I'd brought along Circadian Sleep Disorders Network's sample letter from a doctor to an employer, and my doctor agreed to write something similar for me. I had my salvation there in my hands!

But salvation was still weeks away. I took my doctor's note to my supervisor, thinking that surely she would take me seriously now. Instead, she refused to talk to me. She "passed the buck" to HR. I took them my doctor's note, and HR went back to my supervisor. A week later, I got her answer: She refused to change my hours because that wouldn't "meet departmental needs." I got no details. I truly believe that at this point, my supervisor simply wanted to "win." (Her warped personality is an essay in and of itself. )

More frustrated and sleep-deprived than ever but still undaunted, I went back to the ADA Coordinator with my doctor's note. I met with her and with someone new in HR. A week after that, I got the final answer: instead of shifting the hours of my existing job, I was offered another library job on the same campus. Apart from intercessions, its work hours are 3:45 pm to just after midnight. Of course, I accepted.

I'm doing a less skilled job now, but for the same pay. Most importantly, I've escaped that toxic supervisor, and I've got my brain and my energy back!

So here's what I've learned during the last six months of this hellish saga: If at first you don't succeed, keep trying till you do! Educate yourself about your rights. If possible, get diagnosed and get that doctor's note BEFORE you need it. The support of other DSPS folks via Facebook, as well as the support of a friend with another "invisible disability," have also been invaluable. It's damn hard to be your own advocate when you're brain-dead, but stick it out and find those people who can prop you up. Then, return the favor.

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Last modified Jul 15, 2017
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