Accommodations for Narcolepsy without Cataplexy

[iLLegaLElephant]

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I was diagnosed with type 2 narcolepsy (without cataplexy) about a month before starting medical school last fall, and I assumed pharmacological treatment would be helpful but it fluctuates. The disorder makes sleep irresistible at different times each day and often results in oversleeping in mornings or afternoons, meaning I may miss a class and may not be awake long enough to study as long as I want/need.

I plan to request 504 accommodations, but I am hesitant because I don't want to make unreasonable requests but I also don't want to request too few accommodations and miss out on something that may help. One accommodation mentioned on another forum was an "extended or modified curriculum." I could use a little extra time with the material, but I don't know if that's a reasonable request or not.

I have read the student requirements, and there is only one that could maybe be interpreted to mean I am not fit for the curriculum. It says students "must be able to learn large amounts of material in a short period of time" and "under pressure." However, my sleep doctor does not feel that my condition and symptoms disqualify me based on this requirement.

Does anyone have any tips or experience with accommodations for narcolepsy or similar hypersomnia? What accommodations have you seen or requested for sleep disorders? I wouldn't mind hearing about other accommodations that you've known of, even if not for sleep disorders, just so I can have an idea.

 

[NotAProgDirector]

This is a really interesting issue / concern, and has become more prevalent as our ability to diagnose (and perhaps treat) narcolepsy improves.

I agree a lawyer is probably a good idea. Theoretically you don't need one -- you would request accommodations and have a discussion with your school about it. But there are lots of places this could go wrong, and best option is to address issues early and quickly before anything escalates.

All that said, there are lots of practicalities to consider when you think about how best to proceed. The ADA certainly includes narcolepsy, and the ADA covers both educational and employment situations. But the impact in those two venues may be different, especially in healthcare.

I don't have any personal experience with this. In speaking with others, the accommodations I have heard of include:

1. In school, more time for assignments and tests. This is one of the easiest accommodations to apply for. Additional time is a very common consideration for all sorts of disabilities. It costs the school almost nothing, it doesn't impact anyone else negatively, and it's easy to do. An "extended curriculum" is much more complicated -- in medical school, most courses are only offered once per year. If your request would be to take only 1/2 the workload, you'd end up extending over twice as long. Even if you just want "a little more time" for some things, there may not be breaks in between courses or semesters, one thing may bleed into another. There's also the problem that the whole curriculum is somewhat tied together -- trying to only do pieces of it may be impossible. If you do end up needing more time to complete your coursework, when it comes time to apply to residency they may see that and decide not to consider you.

2. Devices to warn you when you're falling asleep. This completely depends upon your symptoms and how you can manage them, but there are wearable devices that, when they sense you are falling asleep, will buzz / vibrate / otherwise get your attention and wake you up. If this works for you, it's a great solution. For many with narcolepsy, it doesn't really work that well -- when they have a sleep attack they need to sleep, trying to just "wake up" doesn't really work. But, at least it can give you a warning and perhaps help you come up with a plan.

3. Breaks and naps. Some people find that scheduling a break/nap even if for 15 minutes can help. Some find that it's prophylactic to do so (i.e. scheduled breaks prevent attacks). Some do not, and need a break when a sleep attack comes on. This is very complicated. In some jobs, you can just take a break and someone else can pick up your work without a problem. In others, that's not possible -- and healthcare is like that. If you have a schedule of 8 patients to see in a half day, you can't just take a 30 minute break whenever you need it.

4. Time for doctor visits. This is also a no brainer, everyone will give you this.

In general, schools are more accommodating than employers. At school, you don't fulfill any vital function. If you don't come to school, everything keeps working just fine without you. In healthcare, and especially as a physician, you have assigned work that can't just be assigned to someone else. Especially as you move up the training ladder. Planning for breaks would be more feasible than ad hoc breaks. Even that is complicated -- when an employer agrees to an accommodation for more breaks than usual, they will often either make those breaks unpaid or assign more hours elsewhere -- asking for "less work" is not a reasonable accommodation. In residency, this can be really complicated. If you're seeing clinic patients, breaks between some visits could be scheduled in -- but some visits may stretch longer than expected, and if you're seeing less patients that can result in less RVU credits to your supervising physician -- and their salary may be set by their RVU's. So now your accommodation is causing someone else to get paid less. That seems problematic.

Theoretically, you should be free to pursue any specialty you would like. Realistically, you may find that's impossible, or perhaps more accurately you may find that some fields are much more manageable with this problem and thus make your life much better. You probably can't be a surgeon if you have attacks where you cannot function. In a field like pathology where you are often working alone, at your own pace, it might be much easier.

The best strategy is to try to get your symptoms under the best control possible. Talking to a lawyer with experience in this area is likely helpful so you know how to best proceed and what your options are. If your accommodations are not obvious (i.e. more time on exams is not reported anywhere) then it won't be an issue at all. If devices or some basic change to your workplace are needed, this also is minor and won't be a huge issue. If you need frequent breaks, you are likely to find that challenging as a physician in many fields. If you have sudden unpredictable sleep attacks, that's going to be the most challenging to address with accommodations. Oversleeping when you're a physician and not showing up for your shift is not something that is going to be tolerated for long by most employers.

It's a terrible disease and I wish you the best in your career moving forward.