The VOICES of Experience and IH:
A Professional Staff’s Perspective Who Has IH
Please know that we may be functioning beyond our capacity. When we appear to being doing something as others do and (appear to) do without much effort, please know that we may functioning beyond our capacity and that we may pay a price for that functioning. I ask myself at what cost did I just do that? I end up running on empty and that’s when my body gets so maxed out that it says, NOPE! And that’s when I can fall. And, I am not one who falls.
1. Advice to the College Access Office
For more information about this office, see Advice Guidebook C: Advice from College, 2c: Student Affairs.
The VOICES of Experience and IH:
A College Access Advisor
- If you know a student has an IH diagnosis, do your research about the symptoms and how they affect the student’s life and academics before you go into a meeting with student.
- It’s important for the student to know that the college access advisor has an understanding of the diagnosis because it is misunderstood and rarely diagnosed.
- No two students with IH are the same. For example, they may have different sleep habits, take different medications, and have different side effects from the same medications, such as weight gain or loss, headaches, bouts of insomnia, etc.
- Get creative with a student’s accommodations by allowing the student to attend other sections of the course or allow the student to record all lectures so the student can capture content missed when asleep in class.
- Work with instructors in proactive ways by describing the possible scenarios that can occur because of the IH symptoms and come up with solutions for handling situations in the future.
2. Advice to Accessibility Services
The accessibility specialists who offer this advice assumed the role of advocate on behalf of students who had IH, especially when dealing with issues involving faculty— in addition to their designated role of liaison to the faculty. Their advice is based on each of their experiences with multiple students; it is intended for colleagues who may be challenged to adequately provide personal, administrative, and/or academic accommodations to students who have IH.
The VOICES of Experience:
Colleagues Speak Out About What Works
- Move into an ADVOCACY role on behalf of the student who has IH so the student can succeed
- Create a partnership between accessibility services, the student, and faculty to ensure an understanding of the symptoms and having a positive effect on student performance
- Take the lead with the accommodations so you can navigate with the faculty on the diagnosis of IH.
- FLEXIBILTY is key in working successfully with students who have IH
- Acquaint yourself with knowledge of this condition — the diagnosis and the differences and varying patterns exhibited by individual students; understand the disorder and recognize the symptoms. Know that:
- IH is an invisible disability:
- Don’t’ misinterpret symptoms as character flaws;
- IH exists: the diagnosis is real, the symptoms are real.
- Symptoms are uncontrollable and not predictable
- Student does not intend to be disrespectful when symptoms are evident, such as being sleepy or falling asleep in class, having difficulty waking for or in class, or arriving late
- IH is an invisible disability:
- Learn from the students who have this diagnosis: they usually are most forthcoming in providing medical material as well as describing what it’s like living with IH. This is an educational opportunity.
- Be aware of medication management to assist the student to stay awake and current knowledge about sleep hygiene. The student is likely dealing with these issues and awareness can help to have informed conversations about them.
- Consistently monitor each of the student’s classes and the progress made by the student.
- Oversee faculty follow-up and feedback: both of these are essential to the success of the student.
- Use administrative interventions to resolve scheduling problems so the student who has IH has an academic schedule that is compatible with their sleep schedule.
- Provide guidance to faculty re HOW to support students who have IH, respond to students’ needs/accommodations.
- Caution faculty not to let their thinking reach the point of “Can’t do that for this student because I didn’t do that for students in the past.”
The VOICES of Experience and IH:
An Admissions Administrative Professional Who Has IH
- I BELIEVE YOU are the most powerful words for students with IH and their families to hear or to be otherwise conveyed to them, even more powerful than I believe in you.
- The student has what is called an invisible disability, so looks can be deceiving. What you see might be the best version of themselves, regardless of how they look; and, regardless of how confident or capable the students who have IH may (or may not) appear to you, they can feel “less” — less understood, less able to satisfy standards, and less able to be cognitively and physically awake.
- Please don’t pass judgment or assume. Idiopathic Hypersomnia is a complicated and often misunderstood neurological disorder.
- If the student fidgets, sighs, is easily distracted or struggles to concentrate, the student is not necessarily disinterested and or trying to be rude. The student’s brain is constantly in varying degrees of fighting to stay awake and focused.
- If the student is late, please understand that time management is complicated for students with IH. The student has a neurological condition and while it does not reduce their IQ and they may look fine, it does impede their functioning.
- If the student yawns or appears sleepy or sleep-deprived, keep in mind that this is not your typical “sleepy.” Not only are their brains consumed by a desire to sleep, but also they are likely experiencing brain fog and quite possibly have sleep inertia. It is also possible they are experiencing micro sleeps, all of which create interruptions in the process of thinking and doing.
- Consider using the resources. As you look for ways to best support the student, education is your most essential resource, and some incredible ones are easily available: IH Summary of Diagnostic Criteria and Symptoms, Glossary of Terms, Spoon Theory, Sleepy Student Brochure, Glossary of Terms, and the HF video Sleeping My Life Away
4. Advice to Counseling Services
The experienced, licensed counselors who have IH provide the advice in this section to colleagues in counseling centers. They all have clinical counseling backgrounds in campus counseling centers, and one has extensive experience overseeing university counseling services. These clinicians also instruct undergraduate courses in psychological science.
The VOICES of Experience and IH:
Licensed Clinical Counselors Who Are Also Classroom Instructors And Have IH
Understanding the Student Who Has IH
- Keep in mind that the student may already have a diagnosis or be experiencing symptoms indicative of idiopathic hypersomnia (IH) or a related sleep disorder.
- Learn about IH and related sleep disorders
- Be aware and understand the implications of the messages these students receive and their realities:
- The external messages they may receive:
- Have you tried: Going to bed earlier? Taking a nap? Partying less? Changing your diet? Exercising more? Etc.
- You are just lazy
- If you really wanted to, you would/could
- You should work on time management
- It cannot be as bad as you are saying it is
- If you make it a priority to get a good night’s sleep, you will feel better
- The internal messages they may experience:
- Possible feelings: worthless, hopeless, discouraged, disheartened, self-blame, shame, anger, alone with concerns
- Most people do not believe me or understand
- No matter what I do, or how I try to fix it, I am so, so sleepy
- Overwhelmed.
- The realities they live:
- Health insurance: they may not have any.
- Transportation: they may not have a car or be able to drive.
- Finances: they may not have the financial means to see a doctor.
- Medical treatment: they may have seen a doctor and treatments are not helping.
When Working With Students Who Have IH:
- Remember that the following practices can be impactful and empowering for the student who is struggling with an invisible disability:
- Showing compassion and empathy
- Listening carefully
- Validating concerns
- Keep in mind that the student may not be able to describe fully the symptoms or their impact on daily life. The student may present with brain fog that may or may not be obvious, leading to an inability to articulate the full extent of their symptoms and the daily impact they have on their life and academics.
Consider ways to further assess the impact IH (or related disorder) is having on the student’s life, such as:
- Academic performance
- Extracurricular activities/recreation
- Family & Friendships
- Spirituality
- Work
- Health
- Living situation
- Mental health
- Romantic relationships
- Sense of community engagement
Become familiar with Spoon Theory because many who have IH use that metaphor; for more information about this way of communicating, go to www.butyoudontlooksick.com
- It would be helpful for the counselor to be aware of and understand this framework, which is often used by students with IH (and others with chronic illnesses) to describe their energy capacity for doing what they want or need to do. The creator of this theory quantifies energy as spoons and takes the position that people with chronic diseases only get a handful of spoons (energy) each day for their use.
- A student who has IH may be trying to function on very few spoons. The spoons may vary from day to day or even within a day and are often unpredictable. Understanding this can be empowering for both the counselor and the student.
Become familiar with IH and make use of credible IH resources such as the Hypersomnia Foundation and Stanford Sleep Medicine Center
Given that many campus counseling centers have limited time to provide services, become aware of and familiar with:
- How your client (student) is feeling.
- How are they feeling physically? Emotionally? Cognitively? Are they overwhelmed?
- Teach skills at their pace and level of readiness.
- How overwhelming it can be to be a college student. For a student who has IH or a related sleep disorder, it is even more so. Explore with the student:
- What would be most helpful for the student to address today? This week?
- The many struggles and negative emotions a student who has IH may be experiencing. Consider whether there is a need to recommend an assessment for depression and related behaviors of clinical concern.
- Accessibility services on your campus and how to connect the student to those resources. This would include assistance or accommodations for the registration process, so the student has options for classes at times that work better with their condition.
- Refer to a physician or student health center as appropriate, especially for unexplained sleepiness.
5. Advice to the Outreach and Education Office
See Advice Guidebook C: Advice from College, 2c, Student Affairs for more information about this office.
The VOICES of Experience and IH:
Outreach and Education Professional Staff Who Have IH
- Build rapport with your students and they will more likely open up to you and discuss their sleep disorder.
- Educate yourself about the symptoms of IH when you realize that you are working with a student who has the diagnosis.
- Find time to talk with the student who is sleepy. If there is an individual in one of your workshops or trainings who appears to be very sleepy or falling asleep or falls asleep, treat them with respect and do not call them out in your session. If they wake during a break, you can check in with them about their safety. Otherwise, it’s best not to have an important conversation about their needs until after the session ends and when they are more awake. Check in to see if all of their accessibility needs are being met.
- Design your workshops and training sessions with universal design in mind. In addition, inform your groups of students that if any additional accessibility needs have not been met to request them at the most convenient time for the student.
6. Advice to Faculty
A. Advice to Faculty from Accessibility Specialists
The accessibility specialists who offer this advice each have been successful with multiple students who have IH and have done so in the role of being an advocate on behalf of the student by working directly with the faculty.
The VOICES of Experience:
Accessibility Specialists Who Work Well with Students Who Have IH
In order for the student who has IH to succeed, it is necessary that the student and the accessibility specialist work collaboratively with the faculty.
Do not to let your thinking reach the point of “Can’t do that for this student because I didn’t do that for students in the past.”
- Understand that IH is an invisible disability:
- IH exists: The diagnosis is real, the symptoms are real.
- Don’t misinterpret symptoms as character flaws
- College Students do not intend to be disrespectful when symptoms are evident, such as being sleepy or falling asleep in class, arriving late to class, having difficulty waking for class
- Symptoms are uncontrollable and not predictable
- Be aware of ways to work with the student who has IH:
- Faculty follow-up and feedback are critical to the student’s success. Accessibility specialists who advocate for students oversee with them the follow-up by and feedback from faculty because of how important they have proven to be in the student’s success in a course.
- Be open and welcoming to the student who has IH
- Let these students direct you in how to work with them.
- Work collaboratively with accessibility services:
- Engage in a partnership between accessibility services, the student, and the faculty to ensure an understanding of the symptoms and having a positive effect on student performance
- Call the accessibility specialist with questions about the manifestations of the diagnosis of IH
- Talk through concerns, frustrations, etc. with the accessibility specialist
- Consult the accessibility specialist for guidance about how to work with and support students who have IH
- Engage in a partnership between accessibility services, the student, and the faculty to ensure an understanding of the symptoms and having a positive effect on student performance
B. Advice to Faculty from a Counseling Center Clinician From a Counseling Center Clinician who has IH
This colleague, who has IH and is also an instructor in psychological science, asks you to keep in mind your institutional and faculty core values as you consider this advice, which is replicated in part from that given to campus clinicians because of the clinical implications for students who have IH.
The VOICES of Experience and IH:
Clinical Supervisor and Psychological Science Instructor Who Has IH
- Become Informed about IH and other sleep disorders. See Hypersomnia Foundation and Stanford Sleep Medicine Center
- Make an Effort to Understand the Student Who Has IH.
- Keep in mind that the student may already have a diagnosis or be experiencing symptoms indicative of idiopathic hypersomnia (IH) or a related sleep disorder.
- Be aware and understand the implications of the messages these students live with and their realities:
The external messages students may receive:
- Have you tried: Going to bed earlier? Taking a nap? Partying less? Changing your diet? Exercising more? Etc.
- You are just lazy …
- If you really wanted to, you would/could …
- You should work on time management …
- It cannot be as bad as you are saying it is …
- If you make it a priority to get a good night’s sleep, you will feel better…
The internal messages students may experience:
- Possible feelings: Worthless, hopeless, discouraged, disheartened, self-blame, shame, anger, alone with concerns
- Most people do not believe me or understand
- No matter what I do, or how I try to fix it, I am so, so sleepy
- Overwhelmed
The realities students live:
- Brain Fog: The student may present with brain fog that may or may not be obvious, leading to an inability to articulate the full extent of their symptoms and the impact these symptoms have on their everyday life and academics. Patience and empathy as a faculty member may help the student feel safe and able to ask for the help they may need.
- Being Overwhelmed: A college student who has IH or a related sleep disorder can be overwhelmed by these issues:
-
- Health insurance: may not have any.
- Transportation: may not have a vehicle, be able to drive, or have access to transportation.
- Finances: may not have the financial means to see a doctor.
- Medical treatment: may have seen a doctor and treatments are not helping.
-
- Consider a Referral to Campus Resources. Your student may need to be connected to such campus resources as accessibility services, counseling services, or the campus health center. This would include assistance with or accommodations for the registration process, so the student has options for classes at times that work better for them.
C. Advice to Faculty from An Admissions Professional Who Has IH
This member of the admissions team at a state university has IH and extensive experience working with students and supporters. Their advice replicates in part advice given previously to Admissions professionals (see entry # 3) because it is relevant to both those professionals and students with IH and their supporters.
The VOICES of Experience and IH:
Admissions Professional Who Has IH
- The words I BELIEVE YOU are the most powerful words for a student who has IH and their family to hear or to have otherwise conveyed to them, even more powerful than the words I believe in you.
- The student has what is called an invisible disability, so looks can be deceiving. What you see might be their best version of themselves, and regardless of how confident or capable the student who has IH may (or may not) appear to you, the student can feel “less” – less understood, less able to satisfy standards, and less able to be cognitively and physically awake.
- BE PATIENT. This is one of the most supportive actions you can take. Your student who has IH is really trying and wants to be successful. Supporting a student who has an invisible disability, though, can have added challenges and even be personally frustrating because of its invisible nature.
- Please, do not question the validity of the student’s daily functioning and avoid saying things like Just try harder or focus. Instead, take time to follow-up with your student. Sometimes, when the student puts the effort into making progress, the student doesn’t have enough “spoons” left to ask for help.
- Please don’t pass judgment or assume. Idiopathic Hypersomnia is a complicated and often misunderstood neurological disorder.
- If the student fidgets, sighs, is easily distracted, or struggles to concentrate, the student is not disinterested and is not trying to be rude. The student’s brain is constantly in varying degrees of fighting to stay awake and focused.
- If the student is late, please understand that time management is complicated for students who has IH. The student has a neurological condition and while it does not reduce their IQ and they may look fine, it does impede their functioning.
- If the student yawns or appears sleepy or sleep-deprived, keep in mind, this is not your typical “sleepy.” Not only are their brains consumed by a desire to sleep, but also they are likely experiencing brain fog and quite possibly have sleep inertia. It is also possible they are experiencing micro sleeps, all of which create interruptions in the process of thinking and doing.
- If it appears that the student is picking and choosing their “favorite” class or course activities and avoiding others such as projects, often it has more to do with how they learn best: Some topics or activities are uniquely more stimulating for them and allows them to better focus.
D. Advice to Faculty from Faculty Colleagues Who Have IH
The faculty who offer this advice have IH and include a full-time tenured university professor, a former full-time university professor, and an adjunct professor. They all live with the symptoms of IH. They advise you to become aware of some of the credible resources for learning more about this diagnosis, including the Hypersomnia Foundation and Stanford Sleep Medicine Center.
The VOICES of Experience and IH:
Professors and Instructors
- Understanding the Student Who Has IH
- Students who have IH may inadvertently yawn or fall asleep during class. This is not a sign of disrespect. The student wants to stay awake, but sometimes their IH prevents them from doing so.
- Students who have IH need so many hours of sleep that they have fewer hours in their day than their peers. To make matters worse, students who have IH have “off-days” – days during which they are physically incapable of functioning through no fault of their own.
- IH can negatively impact one’s cognitive functioning; thus, it can be an impediment to a student’s academic performance.
- Students who have IH are not lazy. No one asked to have IH. It is a challenge to succeed in school when one is suffering from IH.
- Working With the Student Who Has IH
- Check in with the student privately on a regular basis: Ask: How are things working for you? Is there anything we should consider changing?”
- Always give class announcements and date changes verbally AND in writing.
- The student may look completely disinterested and/or bored during class, but (those behaviors) may very well be symptoms of the sleep disorder or side effects of medication.
- Students who have IH might need flexibility in regard to deadlines. Even if students who have IH appear to be extremely well organized and have excellent time management skills, they may not be able to complete an assignment on time due to IH symptoms.
- It is always a good idea to document conversations with the student about accommodations or additional strategies/changes. Be sure to give the student who has IH a copy of your notes from the conversation so that the student can refresh their memory when necessary.
- Consider a quick survey to be filled out during the first week of class to get to know each student and in particular, ask if the student wishes to meet in order to address any concerns or issues.
- Include an additional Learning Statement in the syllabus to what might already be required by the university. As an example: “Your success in this class is important to me. We will all need accommodations because we all learn differently. If there are aspects of this course that prevent you from learning or exclude you, please let me know as soon as possible. Together we’ll develop strategies to meet both your needs and the requirements of the course. I encourage you to visit accessibility services to determine how you could improve your learning as well. If you need official accommodations, you have a right to have these met. There are also a range of resources on campus, including the Writing Center, Tutoring Center, and Academic Advising Center.
The VOICES of Experience and IH:
Housing and Resident Hall Professionals Who Have IH
- Learn about and be understanding of sleep disorders, IH, and other chronic illnesses. You never know whom you might help by having even basic information and increasing your understanding of their experience.
- Ideally, do your own research by going to this website for information (hypersomniafoundation.org); please don’t push the work of learning about IH onto the student who has the diagnosis.
- Be curious about the obvious. If someone is falling asleep in class or in public, compassionately ask why. Even if they don’t have IH, they may have other issues depriving them of sleep and affecting their studies.
- Ask before offering advice (especially about sleep). “Can I share some tips that have helped me do XYZ?” and only proceed IF the student says yes.
- Be aware of ways to make a difference for students living with IH
- If you build good rapport and trust with students, they will have conversations with you about their challenges, including sleeping through classes, being late for or missing meetings, and conflicts with roommates about their sleep habits.
- If roommate conflicts include sleep issues, then remediate a conversation with the roommates to discuss the sleep habits that are having an impact on each of them.
- When building communities in the residences and creating schedules for programs, think about the choices of times of day and different days and hours so the activities are more accessible to students, especially those with sleep disorders.
- Be sure to include students who have IH on the list of those who may need to be rescued/assisted in emergency situations (e.g., fire alarms, evacuations, shelter in place, utilities outages, etc.) because of the effects of their medications.
- Make referrals. If you see a student struggling, make a referral to:
- Offices of health services or accessibility services. Students with sleep issues or sleep pattern issues may not have a diagnosis or be aware that they might have a problem. The student should be referred to these for assistance and or support services.
- The CARE Team,* the office of the dean of students, or other campus resources that provide follow-up on students of concern; contact them if you believe the student is distressed or the student is causing you worry.
*The CARE (Concern, Assessment, Response, Evaluation) Team provides coordinated support for students in distress and addresses concerns about student behavior, academic progress, and personal issues, including mental health concerns on many if not most campuses.