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.
The issue of narcolepsy in college is a huge issue. However, I struggled in the 60s and early 70s with severe OSA. Classes and study were very difficult. Only when I got into healthcare (an area of interest) did my grades and career start upward.
Thank you Melissa Patterson for this wonderful article. My daughter, who has NwC, will be entering college next year and I have been struggling emotionally with the “what if’s” and this has answered a lot of my questions.
Melissa, Great helpful information! You are a great mentor to many.
Hi Melissa, What a fabulous article. It is full of hope and a tremendous amount of knowledge. i wish we knew you when my daughter was in college without accommodations until we had to go to battle to get them.
Great article!!
Sue
I had a question for the first 4 years I went to College off and on. Because I would get put on Academic Suspension for my grades when I found out I had Narcolepsy it was after I had my 3rd academic suspension which results in expulsion. But my doctor wrote a letter and the School said I could not come back there but left my academic standing as good. So I transferred to another School and there with treatment I was able to pass. I tried to retake the classes that I failed at Auburn where I first started College. At CSU the school where I transferred to I was able to maintain a high C average. The problem is that my GPA when I transferred was a 1.3. So when I finished up all my requirements for my Degree I could not Graduate because my GPA was 1.97 and I needed a 2.0 to Graduate. I could not retake any classes because i had maxed out my hours to receive anymore Financial Aid. Is there anyway I can get those bad grades removed that I made when first started College at Auburn and was undiagnosed with Narcolepsy and not being treated.
Your article really hit home with me. I have had narcalepsy since early childhood.My experiences in college reflect those from highscool grade school. It hurts putting forth all you have into a class, only to barley pass. Now, I have a mother with breast cancer and working full time for health insurance. I don’t want to be seen as different, but my narcolepsy is a part of me that I am unable to ignore. It effects my entire life. My hope is to get my associates and find my dream career. Good luck to you all.
Incredible article on the topic. My rising senior in high school was recently diagnosed with severe narcolepsy with cataplexy this January. Her later middle school years and high school classes were challenging, without the diagnosis. Thankful to have her home another year to work through it and prepare for the next big chapter. The thought of selecting colleges to consider (which we’re finally able to do) is overwhelming for her. Hoping we can begin to get excited about it! I’d love to know if there’s a teen narcolepsy support group anywhere out there for her to join? She is so isolated with the “disability” as none of her friends can even relate to what she experiences daily.
My daughter was diagnosed with Narcolepsy w/ Cataplexy in 8th grade and is heading off to college 10 hours away in 4 weeks. She just started taking Xyrem the summer before her senior year in HS and it has changed her life! Prior to using this medication we were unsure if her post secondary plans and we were only looking at schools within 1-2 hours of home. Even though her daytime and nighttime sleep are in a good place, I am still so unsettled about her leaving. I have helped manage her meds, school accommodations and regular doctor visits for the past 4 years and it’s now time to turn it all over to her. I too wish I could find a teen chat for her to have as a resource. It would be so nice for her to talk to someone who knows what she’s going through. We have so many questions about how to manage xyrem use in college, getting up and out of the dorm during fire alarms or emergency situations. We are working with the office of disabilities and residence halls to get her on the first floor next to an exit and possibly a bed shaker that is linked to the fire alarm system. This is the first narcolepsy student they’ve ever had and I think they are not quite sure how to fully support her. They told me it’s not their responsibility to wake her and get her out of the dorm in case of an emergency? I was told I needed to hire or secure someone who would take on that responsibility. That was frustrating to hear. She is nervous about telling people because she just wants to be a regular college kid and not “that girl” with narcolepsy. High school was rough, trying to get meds that worked took 3 years and she missed out on a lot of typical high school experiences. She’s hoping to have a very different experience with academics, friends and social engagement in college. It was tough to go to the activities, games, dances and make friends when all she wanted to do was sleep. If anyone else has college survival advice or knows of a group chat, please share. I’m not sure I answered your questions I just started my own venting :). I think us moms need a group chat too!
Melissa Patterson thanks for your article about you having narcolepsy and you went on to college..this is my son 1st year going to college and I think I am more nervous then he is.. I really like to hear different stories about teenagers going to college with narcolepsy it helps me a lot and it gives me ideas..
How do I assist a colleague who is a medical student with narcolepsy?
I’m almost done with my first year at college majoring in fashion design. I was diagnosed with Narcolepsy at the end of my junior year in high school.
Fashion Design really is my passion and what I want to do with my life, but the classes are project-based, meaning of you get behind you’re SOL, it’s not like a math worksheet you can just make up in your free time. Also, university policy for fashion majors is that if you miss three classes, your grade drops by one letter, and keeps dropping by a letter for every absence after the first three. PLUS, it is almost impossible to NOT pull an all-nighter, which for me, makes my Excessive Daytime Sleepiness even worse. Most students will stay up all night for up to three days in a row and my body physically cannot do that, but professors seem to encourage it. How do I manage with this curriculum? And is following my dreams really that important if my body can’t physically handle it?
Thank you! I join in the opinion that this is wonderful and useful information.
I was diagnosed with narcolepsy back in school, but thanks to the individual program and partly homeschooling I did not feel any major difficulties. But at university, the situation changed because of the increased workload. And some kind of learning with narcolepsy was a challenge for me. All I realized during my year of study was to know my disease, but to underestimate my abilities deliberately, referring to the disease. I know all about my characteristics, the causes of attacks and how to deal with them.
I study and go to class like other students and take the same workload. But teachers and classmates know about my features and help me if necessary. And of course, for normal health and reduce the frequency of attacks, I stick to the schedule of the day, proper nutrition and healthy sleep. When I do not get a normal amount of sleep (6-7 hours) and sleep less or more, I feel much worse. Now, with the switch to distance learning, my mode has changed a lot and I have not yet found the optimal balance.
I hope you will benefit from my experience!