For many college-bound students, the thought of heading to a completely new academic environment is one that both excites and brings up a lot of questions. That explains the deluge of online and offline resources on topics ranging from acceptance to graduation and everything in between. But for too long, generations of students with narcolepsy have been more used to there being a dearth of college resources that keep narcoleptic challenges in mind.
Ask Melissa Patterson, who was diagnosed with narcolepsy when she was 14 and went onto graduate from the University of Mary Washington for her bachelor’s degree in sociology and also get her master’s degree in public policy at George Mason University. As an outreach coordinator for the Narcolepsy Network, Patterson and has advised many young adults with narcolepsy on pursuing educational opportunities beyond high school and has led roundtable discussions on succeeding in college with narcolepsy.
“There’s nothing like hearing the experiences of someone who has been there and done that, and students want to hear both my experience and the experiences of other people I’ve heard about as outreach coordinator,” says Patterson.
Depending on where the students are in their push for college, the questions vary. Here are some the common questions and answers Patterson shared with Sleep Review.
SR: Should a high school student include reveal his or her narcolepsy diagnosis in a college application?
Patterson: The usual advice I give to people when they are thinking about heading off to school is first off, when you’re doing your applications you want to mention narcolepsy if it is obvious in your high school transcript. In my case, I had to explain my grades from freshman year, where I nearly failed algebra. So you can use narcolepsy in your college application essays that way, but if you don’t need to explain something like that then you don’t need to mention it. When you do decide to mention it, don’t use narcolepsy as an excuse, but rather use it in your essays as a story of personal growth or something along those lines.
SR: What are some other things a high school student with narcolepsy should keep in mind as they make the decision to go to college?
Patterson: When you’re thinking about which schools you want to go to, think about how comfortable you are with your medical regimen, and of course what fits your personality in terms of whether you want to go to a big school or a small school or how close you want to be to home. Staying close to home can make some things easier, but staying on a college campus can make it easier for you to be a part of the campus community. Of course, like any other college student, you’re thinking about where your [academic] interests lie. Thinking about financing your education, whether you need to apply for scholarships [students can also apply for scholarships exclusively available for those with narcolepsy such as this one] is important too. I also tell some of the students I advise that not everyone needs to go to a four-year school. If you want to do accounting, you could get an associate’s degree and work for an accounting firm, or if you’re doing something like videography, technical schools can offer programs in that area….I’d also recommend taking online courses if that’s something that appeals to a student as well.
SR: For college students, what’s your advice on getting accommodations from a student disability services office and what types of accommodations should they look out for?
Patterson: Know your rights; I think there’s a perception among people that narcolepsy isn’t a disability. But a disability is something that has a major impact on a major life activity and narcolepsy kills your sleep-wake cycle, and that’s a major life activity. Even though you don’t feel disabled, you’re still not playing on an even playing field so you have a right to receive accommodations so you are on an even playing field.
So the usual process with getting your accommodations is if you got the high school accommodations and a 504, you make a copy and send it to the office of disability services, you request a meeting with the director or the ODS [Office of Disability Services] representative, and you usually have to educate them about narcolepsy because 9 times out of 10 they will be clueless about your accommodation needs. Then you find out about how notifying professors are handled and what your responsibilities as a student are and then you discuss helpful accommodations.
I usually tell people more is better. It’s easier to not use the accommodations that you have and it’s harder to get accommodations added on. So one I recommend is priority scheduling; that one I cannot recommend enough. That’s the one where basically you’re the first one to sign up for classes, and you get to butt in front of the athletes and the seniors so you can get classes during the time of the day when you are the most alert. Also it is easier to get the classes you need to fulfill your major so that you don’t risk getting waitlisted and then having to cram more classes into your semester than you really want to do.
You can get extended time on tests and quizzes, which many, many students with narcolepsy have. Multi-day testing is also an accommodation that can be useful. For example, if you have a three-hour exam that might not work well for someone with narcolepsy or if it’s a late night class that might be something you can arrange with your professors so it can be taken at a different time. Flexible deadlines on assignments, so if you have three term papers that are all assigned at the beginning of the semester and they are all due on the same week, that would be something where you go up to your professor. That’s your responsibility as a student to negotiate with the professor ahead of time for this accommodation and work out a schedule for turning stuff in that does not involve you having to turn that paper in from the week from hell.
You can get note taking assistance: Some students in class will be assigned by ODS to take notes for you or your professor will know what students are doing well in class and assign them to take notes for you. You could also get permission to record lectures and take pictures, for example; in my macroeconomics class I was always taking pictures of the boards (that made me very popular in my study groups). Study groups are not an accommodation but I recommend them highly to people because in the case that your notetaker wasn’t fabulous or you just don’t have that portion of the notes or don’t still quite understand it, you can ask for help.
Another accommodation you can arrange is getting exempt from tardies and absences. Now that’s a little harder to do than in high school than in college, but for example you can arrange to make sure that your tardies for an 8 am lab, which is the only session that’s offered, excuses your tardies at 8 am because it’s not an optimal time for you, so it’s not going to count against you. That’s my general spiel on academic accommodations.
SR: What are some things to look out for when it comes to roommates and campus housing?
Patterson: They’re pluses and minuses to having roommates. For instance, they can be an outlet for your social life and can be a good way to find out what’s going on on-campus, they can help you wake up in the morning, help you get going and it can be less expensive to have a roommate. On the downside, you can also end up with the roommate from hell. Your complicated sleep schedule may be disturbing them or they might be a night owl who wants to do French homework outloud at 2 am. You really also want to look at bathroom arrangements; if you’re pre-medication and you need to stumble into the bathroom, you do not want to go all the way down the hall; if you have to make up your Xyrem, you do not want to have a stash of water bottles under your bed. So having a bathroom that’s attached to your room is a major plus.
When you’re living on-campus there are things to consider, especially when you have bad cataplexy or are taking Xyrem. Being on the ground floor can be a major plus….Some medications can make you very sensitive to temperature, so having an air conditioning unit can be a thing depending on what campus you’re in. That’s an accommodation you might have to work out with campus housing….If you have trouble waking up in the morning that can be a big thing so you can have something like a shaking alarm that will vibrate your bed or light alarms that will flash a strobe light for waking up in the morning. And most of the things I’ve mentioned just now are things you can work out with housing accommodations. You also might want to look into talking to campus safety when you’re taking Xyrem because you’re going to be knocked out and won’t be able to self-evacuate in the case of a fire, and this is also something you can discuss with your resident advisor in terms of fire drills and emergency measures that need to be taken.
SR: From your experience advising many young adults with narcolepsy who really thrived in college and beyond, what are some of the traits that they have in common?
Patterson: Flexibility, adaptability, and a really good sense of self-motivation. That’s key for both college and that’s especially key in your professional life. You have to be able to self motivate and you have to be disciplined. You have to be able to turn down the invitation to laser tag to write a term paper ahead of time because you can’t pull an all-nighter. The same thing goes for your professional career: that job with the Peace Corps looks awesome and fun especially when you’re going to other countries but you have to think about “Am I going to be able to pull those hours? Am I going to be able to pull my fair share of it? Am I likely to be able to get the healthcare I need?” You have to learn how to work with your strengths and weaknesses. I know one of my weaknesses is that if I am sitting down in one of the offices and work 9-to-5 staring at a computer I will absolutely fall asleep and I will turn into a work zombie. I have to have a job that allows me some creativity and one that allows me to do a variety of different things to do. I need a job that allows me flexibility of work schedule and responsibilities where you have a fair degree of autonomy. This can be great for people with narcolepsy, but it really depends on the person. But self-motivation is really important and is the No. 1 thing and self-discipline. Advocating for yourself is also important and of course that’s something you’ll learn through trial and error. Oh and network, network, network. Network with your professors, network with your bosses, network at your internships and network with your classmates so you have the best chance of finding something that interests you and works for you.