Advice To College From Students And Supporters
Section 1
Advice From Students Who Have Idiopathic Hypersomnia
Students who lived with the symptoms of IH while in college offer this advice to campus staff, accessibility services, and faculty. These students attended 2 and 4-year private, public, and vocational schools. They want those who need to know about their disability to be aware of and understand their symptoms. They do so through The Voices of IH entries and their summarized statements of what it is like to live with IH as a student.
The VOICES of IH
IH is fickle! Good days don’t invalidate bad days.
A student may have a good day, good week, or even a good semester (if you’ve had a student in multiple classes). It doesn’t mean that the student was faking it earlier, and the student may relapse and start to struggle again soon. Time of day, medication changes, workload, and many other things can affect the severity and presentation of symptoms.
- The struggles of IH are real and usually happen when you don’t see them. We usually stay away from classes and friends when we are struggling. Even if we seem fine while we are in front of you, we are struggling. We need the accommodations we are asking for because they are very necessary.
- Please don’t make any assumptions about our disability or the accommodations we need. But do encourage us to make sure our disability is documented with campus accessibility services.
- Please educate yourselves about the signs and symptoms of IH. Many of us may not be diagnosed when we enroll in college; rather, we may be going through the long process of being diagnosed while there. Staff can meet with us one-on-one for a discussion about our sleepiness and possible sleep disorders. For more information, go to hypersomniafoundation.org, the Sleepy Students Brochure, and the video HF Sleeping My Life Away.
The VOICES of IH
We give our instructors the same advice we give all campus staff: IH can be embarrassing. We need understanding and empathy. No one wants to fall asleep in class (or elsewhere on campus) or wake up and realize you’ve overslept or have to admit that you can’t meet a deadline. It’s tough to ask for help when you feel so vulnerable.
When working with students who have IH, it’s important to keep the following in mind:
- Flexibility is paramount. Some of the symptoms of our disability may become evident to you in how we get to class (or not), how we are in class (yawning, unfocussed, sleepy, looking sleep deprived, sleeping), and how we meet deadlines (or not). We need your understanding of the symptoms of our disability and your flexibility in working with us.
- Your support is needed. When we appear to be falling behind, reach out to us, and if we are registered with the accessibility office, reach out to that office so we can all work together.
- Meeting during your office hours is useful to address any extra help we may need in class; your flexibility in arranging times to meet is very important because we may not be able to be awake or wake up for your office hours.
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- We can be tired, yawning, sleepy, or even fall asleep in class.
- We are not trying to be disrespectful, rude, or offensive to you or the class material if we yawn or fall asleep during class. We may be very interested in the discussions and still fall asleep. It has nothing to do with you or the class.
- Falling asleep in class and in front of peers can be humiliating for us. We are vulnerable and your empathy and understanding are appreciated.
- If we do fall asleep in class, we need your support. Once class ends and in private would be a good time to discuss with us a plan for what to do when it happens. Some of us may not be able to immediately wake up; some might prefer to be woken up, while others might prefer to be left alone to catch up (with class material) on their own time; and some of us might not want to have additional attention drawn to us if we fall asleep during class.
- We can have problems being on time or getting to class.
- Best to not require advanced notice for missing classes. IH can be unpredictable; we may not be able to give advanced notice if we are going to miss class or are unable to meet a deadline because we may not be awake or alert enough due to sleep inertia or brain fog after sleeping 13 hours. Go to Glossary of Terms for more information about these symptoms.
- Flexibility is key with attendance. If possible, provide us with alternate times and options for class attendance, especially when there is an early morning course requirement for traditional students.
- We can have problems meeting deadlines. Depending on the individual student who has IH, this may be due to “cognitive dysfunction,” which includes deficits in memory, attention, and concentration, sometimes referred to informally as “brain fog.” (See bulleted entry above) or to having “long sleep” and daytime sleepiness or to both cognitive dysfunction and excessive sleep/sleepiness. Typical approaches to helping with these problems may not be effective. This symptom may result in us being constantly late with assignments and asking for extensions.
- We may need flexibility when it comes to testing.
- Accommodations that may be needed:
- Extended time on tests
- Long tests being broken into segments or over the course of 2 days
- Long tests being “chunked” into multiple testing times.
- Testing options may be needed.
Arranging an alternative time to take an exam may be necessary, especially when the exam is scheduled for a time different from class time on the same day or is scheduled for a day different from the days on which class meets.
- Accommodations that may be needed:
- We can be tired, yawning, sleepy, or even fall asleep in class.
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The VOICES of IH
Reading can be tough for people who have IH. It is generally an activity that puts us to sleep quite quickly.
No Penalties, please! … for the symptoms of my disability
Please understand that absences, tardiness, and tiredness in the classroom are not a result of the student making bad choices and they should not be subject to rules that penalize them for it.
I really appreciated when a professor would encourage me to contact them if I needed anything. It’s such a small thing a professor can do, but it just makes a world of difference. Even if I never took them up on their offer, it put me at ease and made me feel like I could do it and succeed in their class.
The VOICES of IH: Legitimacy, please!
This is actually a disabling condition, so give us the same legitimacy you would to a student with a visible disability.
- Build in an option to amend the list of accommodations with relative ease as new issues/needs arise.
- The uncertainty of day-to-day life for those of us living with IH, or an undiagnosed sleep disorder paired with the new experience and demands of campus life, makes it hard to know the exact accommodations that we will need. Having the option to easily amend the Checklist of Accommodations is very important.
The VOICES of IH
The option to amend the list of accommodations is such a critical point. I was guilty of being very resistant to certain accommodations (‘No, no. I don’t need a note taker!’), but my accessibility specialists encouraged me to be open to additional accommodations in case I need them later… When my meds stopped working halfway through the semester, boy was I happy to be able to start using a note taker.
- Suggest accommodations/strategies that likely will work well for students who have IH:
- Ask us for our input rather than telling us what we need, but also offer suggestions and options. We may not know what to request, or even what we can ask request, or even remember what we’ve already identified.
- We may be very new to accessibility services and may not even be aware of what accommodations and supports are available or how they can help. We will need to be educated to accessibility services at the same time we may be overwhelmed by the onset of symptoms.
- Students find these accommodations very helpful:
- Flexibility with tardiness
- Flexibility with attendance (extended absences)
- Access to priority scheduling/early registration to enroll in classes before other students register, to ensure that the student gets the courses best fitting their IH needs (napping, sleeping schedule, medication schedule).
- Preferred seating in classes
- Movement breaks during classes
- Access to water or other drinks during class
- Audio recordings of lectures and books can be incredibly helpful for students who have IH so they can get through the course material; the recordings allow students to pause, rewind, and re-listen in a way and at a time that work best for them. In addition, it’s a great resource to circle back to.
- Class PowerPoint slides available before and after class
- Bulleted notes from the class made available by instructor or scribe
The VOICES of IH: Students’ Reflections
I was guilty of being very resistant to certain accommodations (“No, no, I don’t need a note taker!”) but my (accessibility) specialists encouraged me to be open to the accommodation in case I needed it later on (and when my meds stopped working halfway through the semester, boy was I happy to be able to start using a note taker!). Their encouragement made all the difference.
If we are asking for accommodations to deal with missing classes, we may also be missing the opportunity to eat in dining halls that are not open when we are able to get to them. Please make sure that we are able to access flexible dining options/alternatives as a part of our accommodations.