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Advice From College To Students Who Have IH

SOMETHING YOU SHOULD KNOW BEFORE YOU BEGIN

This guidebook discusses challenges that students who have IH have faced in college.   We don’t want students who have IH to be blindsided or set up for failure by not knowing about them. At the same time, we don’t want any student who has IH to be discouraged from pursuing their goals.  By being aware of these challenges, students will be able to strategize how to manage them to succeed in their studies.

We will begin guidebook with advice from former students who have IH. You will find that advice in the entries  Student TIPS! and The VOICES of IH.   Additional advice for beginning this section can be found in the following Education Essentials Guides:

Student TIPS!

Stay Positive and Focus on What is Possible!
Knowing the difference between what is within your control and what is beyond your control is critical to effectively managing situations.  One sure way to get yourself into a mess is to confuse what you are able do with what you are not able to do. To prevent that from happening:

  • Focus on what you CAN DO about a situation and then DO it!
    Technique: Make a list of all the things you CAN do to change a situation, then move ahead and DO them — one at a time until you achieve your goal. Breaking things down into small, manageable actions is important.
  • Know when you CANNOT DO anything about a situation. Then pause and ACCEPT it.
    KEY:  Problems typically develop is when you do not do all you can about a situation and focus instead on trying to change what you have no control over and can do nothing about.

The VOICE of IH:
An Alum Reflects

Choose Courses You Can Manage When I changed my major…. I was able to do a lot of my coursework remotely, and while negotiating with my professors was still a big part of the way I managed my work when my IH symptoms got out of hand, the solutions became a lot more manageable. In my senior year, I took on more credit hours than I had in previous years, but the work load did not overtax me because the types of courses I took allowed me to do work remotely, easily get access to notes when I wasn’t able to get to class, and the physical demand of working long hours in the studio (required by my previous major) was no longer exacerbating my crashes. Dealing with IH and my coursework was still difficult because finding a treatment that worked for me was a struggle throughout college but having courses that I could manage made a huge difference in my college experience.

1. Advice From College Administrators

The administrators who offer advice in this section do so from the vantage point of years of experience handling academic and campus issues on behalf of students who have disabilities and their supporters. They are deans, vice presidents, associate provosts, provosts, and assistant vice chancellors at both in-person and online institutions. Some had been classroom professors earlier in their careers. Their advice to you is focused on your academic work and your life on campus.

A. When It Comes to Your Studies

When it comes to staying on top of your studies, administrators would like the college staff to know when you need support so that you succeed in your courses. Not all students are ready to ask for help when they need to from accessibility specialists. So, keep this advice in mind:

  • Know with whom you can speak about your courses and where their offices are located.Your orientation can point you in the right direction, including:
  • Academic Advisor/Advising Office. Not all students who have IH request accommodations. However, if you do plan to request accommodations for your IH symptoms, then this officeis your first stop.If you are unsure about requesting accommodations, you can talk with your academic program’s advisor or with an advisor in the advising office on campus about it.
  • Accessibility Services. The name of this office will differ from campus to campus, and some campuses separate students with learning disabilities from those with other types of disabilities, such as physical, neurological, or emotional. If you don’t already have the name and location of the accessibility services office on campus, ask your orientation leader or academic advisor for it; you will learn who your accessibility specialist (AS) is when you go to the office to register.
    • This is the office where you request accommodations and supports; this is also the office to go to if you have concerns about or believe that an instructor resists giving you the accommodations identified in writing by the accessibility specialist (AS).If the accessibility office cannot get involved between a student and a professor OR cannot resolve the matter, then you can request to meet with the dean overseeing student issues.
  • Dean of students. The title for this position will differ from campus to campus, as will the name of the office. Regardless, there may be matters with which your accessibility specialist cannot help (but go there first to be sure!), and your dean can. Those matters include:
  • Faculty issues, such as demeaning comments to or about you, your diagnosis, or the accommodations or supports, you have been given by the AS;or the discrimination of your civil rights.
  • Interruptions in your education allowed by the college when you need time away from college.Specifically, your dean will explain and discuss with you the types of academically and medically-based interruptions you are entitled to as a student at the college, including: (see your campus handbook for explanations of the following)
    • Credit Elimination of low performing classes
    • Medical Leave of Absence
    • Medical Withdrawal
    • Retroactive Medical Withdrawal
  • If you are struggling academically, you may be flagged by the college and offered support. Networks of analytics exist to notify staff in the offices of academic advising, academic affairs, accessibility services, residential life (if relevant), health services (if registered), etc. of how students are performing at predictable times during the term (e.g., a few weeks after classes start, the term’s mid-point, and when classes end).
  • If you are a returning student, a student studying remotely, or a veteran, you will want to locate where there are supports specifically geared to your needs so can succeed in your studies (See below #2a: Advice from College Staff )

Student TIPS!

Q:  When there is a need for a “go-between” person between the student and the faculty member, and the accessibility specialist does not/cannot work with the students and faculty in that role, to whom do you go?

Know the bottom-line when you have problems with your studies.  Although some families do reach out to communicate with the instructor directly, especially if their student is missing classes or is too sleepy to talk with the instructor, the person on campus who is prepared to discuss the situation with the student and supporters, and work with the faculty member on behalf of the student, is the dean responsible for student-related issues.

  • Instructors may not know how to help you.  They often wonder… What am I supposed to do???  They will benefit from your guidance and that of your accessibility specialist to learn about and understand the accommodations and supports you need in your courses.  Keep in mind that you may be their first student who has a diagnosis of IH (or the first one with they know of!).
  • When relying on recordings to learn the content covered in class, arrange to have a discussion about the material when listening to it. Talk with your accessibility specialist about working with a tutor or peer coach so that viewing/listening to recorded classes includes discussions about them. Listening without discussing may not result in quality learning.
  • Find out whether you are enrolled in a “multiple section course” offered by the same instructor. If you are, talk with your instructor about whether it’s possible for you to attend the instructor’s other section when your IH symptoms prevent you from attending your scheduled class.   
    • If it is a multiple section course with different instructors, you will probably need to enlist the help of your AS and/or your instructor to attend the other instructor’s class when you need to. If you are not successful and the reasons given make no sense after discussing the situation with your accessibility specialist, then request an appointment with the dean of students to discuss the matter. Be sure to have explored all options first!

The VOICES of IH:
An Alum Reflects

It may also be helpful to ask if you can have priority when it comes to course selection. Students [with disabilities] may be able to register ahead of other students, so that they are guaranteed a spot in a time-slot that works for them; or if a class is capped at 15 students but it is the section with the preferable time, the students could ask for an exception to be enrolled as the 16th student.

  • Students need to be very proactive in seeking accommodations. Too often students either do not plan appropriately or are too reticent to come forward in advance. Regardless of the reasons, and administrators do understand that there are legitimate reasons, students must realize that accommodations cannot be given retroactively; they must be determined in advance. Students often fall back on a medical issue as the reason for poor performances on exams or papers, or if involved in experiential learning, less than acceptable demonstration of skills and knowledge in a lab or at a field site. Although such reasons can be taken into consideration going forward, they cannot undo failing grades. For insight on how to advocate for yourself, go to the HF Advocacy Brochure. If you are involved in experiential learning, such as an internship, labs, service-learning, etc., then a discussion with the onsite supervisor about your disability and how it affects your functioning can be helpful, especially if your accessibility specialist participates in those conversations. For more information on experiential learning, see Education Guidebook B: Experiential Learning.

Advice from administrators who had been teaching faculty. These administrators have the advantage of first-hand experience in understanding the academic challenges students who have disabilities face.

  • Know Which Learning Contexts Work Best for You
    For a big-picture how learning happens at the college level, go to Education Guidebook A: Instructed Learning.
    • Highly interactive classes?
    • Lecture-based courses?
    • Group-based classes? This includes ensembles in music education, group work in social work and human services education, etc.)
    • Flipped classrooms? This includes outside-class assignments that prepare students for a class focused on problem-solving/ issues addressed through interactive discussions in small groups. Ask your AS about which faculty are “flipping” their classes and whether you should be looking into those courses. For more information about this approach to learning, see Education Guidebook A: Instructed Learning.
    • Experiential? This includes project-based in classes, labs, community-based learning, internships, service-learning, course-related practica, field work, etc. See Education Guidebook A: Instructed Learning and Education Guidebook B: Experiential Learning.
      • Remote/Online Learning? Discuss with your AS the following options and which are compatible with your IH symptoms. For a brief, general overview of learning remotely, see Education Guidebook C: Online Learning.
        • Online courses
        • Hybrid courses
        • Webinars? Shared chats? Zoom classes
        • Self-paced learning (Includes independent learning, often remotely, that focuses on learning outcomes such as projects.)

Good to Know! Determine the shelf life of the online course before beginning so that you can pace your learning; inquire about papers and tests.

Student TIPS!

Something You Should Know:  Scaffold Learning

Faculty who become administrators are very aware of the importance that students understand the concept of scaffold learning when choosing their courses and their academic majors—whether they learn in-person, remotely, or online.  Some basics of scaffold learning are noted below. For more information about this approach, see Scaffolding description in The Glossary of Education Reform.

  • Understand what scaffold learning means so you can determine whether it is required in your courses.  Scaffold learning is an approach that ensures that students are ready for the next levels of knowledge and skills—whether in the course itself (Think: mathematics) or in their academic major (Think: prerequisite courses).
    • Each “chapter” of learning builds on the basics taught in the previous “chapters.”
    • To move to the next step, students must demonstrate that they have mastered the designated knowledge and skills.
    • For this to happen, students are tested for mastery each step of the way—so lots of testing (Think: course labs) and are not allowed to move until they do (so maybe lots of “make-ups” if allowed.
  • Understand how the scaffold instruction method affects how you go about learning course content.  What is to be learned, how it is taught, and how learning is assessed are affected by this approach to instruction.  These need to be good fits with your IH symptoms.
    • Chunks of learning. The instructor divides the knowledge and skills that must be mastered into “chunks” for learning and creates or uses existing tools to test the student for mastery of the concepts and required skills.
      • Expect and prepare for a pre-determined pace for learning, which includes the speed of covering course materials and the number and frequency of assignments, quizzes, and examinations.
      • Expect to do a lot of self-assessment throughout this type of course so that the sequence of knowledge and skills that must develop do.
      • Expect to strategize how to stay current with your classes and assignments when in a scaffold course!
    • Academic programs that use this approach include professional studies such as counseling psychology, human services, nursing, social work and the STEM disciplines (Science, Technology, Engineering, Mathematics). 
    • Laboratory courses (labs) use this approach to achieve mastery unless they are “stand-alone” labs. 
    • This method affects how testing and papers are to be completed–whether in-person during class, remotely, online or as take home assignments, etc.  If not described in the syllabus, ask how they are to be completed.
    • Pre-requisite requirements for a course use a scaffold approach to ensure student academic-readiness for a course.
    • The sequencing of courses in the academic major or minor often uses a scaffold approach in the overall design of the content.

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B. When It Comes to Campus Life
Besides your studies, administrators are concerned about two aspects of your life on campus:  Safety and Supports

  1. Ensuring Your Physical Safety
    Administrators prefer that their first responders know who on campus has a diagnosis of IH, what symptoms they experience, and how the student would like the first responders to work with them in the event of an incident.  However, the first responders on campus may not have heard of the diagnosis of IH or its symptoms and have a need to know the following about you:
    • What other conditions could medical personnel misread a student who has IH as having when that student is not acting in functional ways? Could the non-functional behavior be confused with a diabetic coma? Depression? Drug overdose? Other conditions?
    • If you are taking medication(s) what would an overdose on the medication(s) look like?
    • What kind of medical identification are you carrying on your person? Medical bracelet? Medical identification card that identifies the medications being taken (if possible, encoded for first responders/medical personnel)?  For more information about using an identification card for  IH, see the HF Medical Alert Card.
    • Should your name to be on the list of students needing help during campus emergencies?  Some colleges keep a list of students who may need a rescue/assistance during emergencies such as a fire, lockdown, evacuation, utilities outages, etc. Check with your dorm RAs (or residential life staff if living in off-campus housing) to discuss whether your medications put you at risk and you to be on the list for assistance in such emergencies.
  2. Making Support Resources Available to You
    Administrators want student affairs staff to be aware of whether the IH symptoms create issues for you concerning campus life and, if so, how student affairs staff can help.
    • Ask your accessibility specialist to work with the student affairs staff to be sure that these resources are available to you:
      • First- and Second-year initiatives programs
      • Student Success Collaborative (if it exists on your campus)
      • Faculty and student affairs staff
    • Be sure those who need to know about your IH symptoms DO know! College administrators would like students who have IH to have conversations about their symptoms and provide information that can be shared across departments/services as appropriate and when relevant; they suggest that students discuss this request with their accessibility specialist so the following personnel on campus can know if appropriate: 
      • Accessibility specialists
      • Tutoring/specialized support services
      • Faculty
      • Campus safety:
        • First Responders and Residential Life
      • Health services
      • Counseling services
      • Career services
      • Student affairs programs
    • And, if living in campus housing:
      • Resident assistants, hall directors, live-in professionals
      • Roommates

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2. Advice From College Staff

In this section, you will find advice from professional staff affiliated with varied on-campus departments, including admissions, online and remote education, adult education, and student affairs. Some staff have IH, and their advice is found in the entries title The VOICES of Experience and IH; advice from those who don’t have IH will be found In The VOICES of Experience.

The Admissions Office: Advice and Navigation Guidebook

This professional in the admissions office of a state university has IH and offers advice based on extensive experience working with students and supporters. This professional also wrote the Navigation Guidebook A: Admissions Office also located in this guide for students and supporters.

A. The VOICES of Experience and IH:
Advice From an Admissions Professional Who Has IH

  • Believe in yourself! While living with hypersomnia invades every aspect of your life and challenges daily functioning, you are more than your symptoms, and you are worthy.
  • Cut yourself some slack. You are a person with hypersomnia and an “invisible disorder warrior” fighting through the layers of IH and doing the most you can with what you have at any given moment in time.
    P.S.  IT’S OKAY TO FAKE IT ‘TILL YOU MAKE IT!
  • Use your support system. Having people and a system in place to support you and your needs does not mean you are not capable. It can have a positive influence on your educational journey. While you have to do the work, and perhaps even use creative and/or modified techniques, you are not alone. It’s even okay if you ‘fall short” of initial expectations and desires. Readjust and start again.
  • Advocate for yourself. This is likely the most valuable action you can take and, quite possibly, the hardest. No one knows better than yourself what it is like being a student who is living with hypersomnia – waxing and waning and various levels of wakefulness, being stuck in the transition between wake and sleep, and trying and working harder than most can comprehend. For more information about advocating, see the HF Self-Advocacy Brochure.
  • You are much more than your disorder!  Take time to review the items above and remind yourself of this: While the disorder may be a constant companion on your educational (and life) journey, you are so much more!
    • Nurture yourself
    • Practice self-care
    • Do the Work! Put time in on your assignments
    • Put in time on less-than-okay days to be gentle with yourself
    • On more “okay days,” embrace your education (and take time for some fun and wellness activities, too)
    • Through it all, BELIEVE IN YOUR SELF!
  • Supporters … BELIEVE WHAT YOUR STUDENT HAS TO SAY!

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B. Advice from Online Admissions & Adult Education Services

This brief, to-the-point advice is coming from staff on a campus where there are designated offices to support and address the needs of the older/non-traditional/returning students.

  • Know your rights! Learn more in the Education Essentials #3 Guide to Requesting Academic Adjustments for College Students Who Have IH
  • Know how to advocate for yourself. Learn more in the HF Self-Advocacy Brochure
  • Recognize the importance of needing a “home base” at the school – a primary single point of contact — even if you are not enrolled in-person program on campus.
  • Know who is in your support system and engage them when you need them
  • No designated adult-advising center on campus? Go to the student advising center or reach out to your academic advisor or accessibility specialist for assistance.
  • Know what is meant by a “scaffold” course. This term refers to an approach to learning and instruction that often drives the instructional design of many courses, especially online courses when taken in real time (synchronous). The course is taught in this way to ensure that the student demonstrates mastery of current course material before moving onto to new skills and knowledge. For a more in-depth understanding of this approach to learning and instruction, see earlier entry in this section of Student TIPS! Something You Should Know: Scaffold Learning.
  • Know about online learning at your college
    For a comprehensive, general review of this approach to education, see Education Guidebook C: Online Learning in Education Essentials #4 Guide to Academic Resources Education.
  • Know your options
    • Realize that online classes are time consuming and expensive.
    • Research your online college thoroughly. There are significant differences among programs/colleges.
    • Know that many full-time, online universities have developed advanced ways of connecting students to services in the community and on campus.
  • Know how the courses are managed
    • Ask: Are analytics software used to track your performance so you are identified to the instructors or other college personnel if you are struggling and resources can be directed to you?
    • Ask: Can the analytics software determine how students with disabilities are functioning in the courses?
    • Ask: Does the technology confirm identity, e.g., are cameras used? Then think about how you want to present yourself for your attendance file.

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C. Student Affairs: Advice From Professionals Who Have IH

Student affairs encompass many programs and offices on and off campus that support the students’ college experience. In this section, professionals in Residential Life, College Access Services, and Outreach and Education, all of whom have IH, offer this advice to students:

The VOICES of Experience and IH:
Advice from Professionals in Student Affairs Who Have IH

  1. Residential Life Professionals who have worked with students and staff in the positions of resident assistants, resident hall directors, and live-in professionals on campus have this advice:
    • Understand yourself. Knowing your symptoms and needs is a good way to help others understand what you are experiencing and may need from them.
    • Use the resources on campus! They exist for all students and for a whole range of needs. 
      • You already know that IH doesn’t just affect your sleep; having a chronic condition can have an impact on your emotional health as well. The counseling center on campus can offer support and may even have a group for students coping with chronic illness.
      • Seek out accessibility services even if you think you won’t need them; it’s better to have those support systems in place ahead of time.
    • Be transparent and build your allies.  Tell people you trust about your diagnosis. Inform those most affected by your symptoms and diagnosis, including the college staff you are in contact with such as your RA, instructors, your friends and class peers. They can help you and will understand when you are having a high fatigue day, or possibly intervene if you are sleeping through something (e.g., class, study hall, groups work, etc.) or are in an unsafe situation. Be sure to inform your roommates and work out a plan ahead of time for situations related to your IH symptoms, e.g., lights on/ off,  music, streaming/ screen time, etc.
  2. College Access Services   This is a federally supported office on campus that provides resources and support to students whose access to college was very challenging due to being a first generation college student, low income, etc. NOTE: The office is not connected to the accessibility office; suggest you check with the AS about status on campus.
    • Seek accommodations at the beginning of the course from the Accessibility Office on campus.
    • Bring IH resources to your meeting with the college Access Advisor such as links to/ information about the Hypersomnia Foundation or handouts of the IH Summary of Symptoms and Diagnostic Criteria.
    • Request a meeting at the beginning of the course with your college Access Advisor and the instructors in whose classes you anticipate issues; identify what those challenges are and discuss scenarios for handling them with the instructor and Access Advisor.
  3. Outreach and Education
    This is federally supported office responsible for community outreach and education programs for campus personnel and the broader campus community. The programs are not part of academic courses and do not necessarily offer academic credit. The office offers sessions/programs to develop an understanding of social justice and equity issues, including cultural understanding and practice, by promoting dialogue, raising awareness, and informing behaviors, on topics such as micro aggressions, equity vocabulary (e.g., oppression, privilege, the “isms,” etc.), current language usage (e.g., debates about first-person usage [a person with a disability vs. a disabled person], BIPOC vs. POC, bi-racial vs. mixed race), accessibility,  universal design for learning. Check with AS about its status on campus.
    • Challenge yourself when taking these sessions or programs to share about IH symptoms and how they affect your daily life.
    • Ask permission to record or take notes during the sessions or request other necessary accommodations
    • If not already provided, ask for copies of the presentations, slides, and other materials. 
    • Use your IH as an advantage to help yourself and others understand invisible disabilities; relate them to different types of oppression that occur and to privilege because of their invisible nature.

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3. Advice From the Office of Accessibility Services

The accessibility specialists who offer the following advice all worked with students who have IH. However, in describing their roles, it became apparent that not all worked in the same ways with students who experienced symptoms.



  • Although accessibility services offices are federally mandated to provide accommodations for students with disabilities, the roles that the accessibility specialist assumes and how their office and the campus provide support to the student can vary considerably and affect the services offered and the students’ success.

a. Know the Role(s) of the Accessibility Specialists on Your Campus
Students should know that all accessibility specialists (AS) function as liaisons between students and faculty. Some AS also function as advocates on behalf of the students when working with the faculty and other members of the college community. The differences between these two roles reflect the philosophy of the AS/accessibilities office/campus leadership.



  • It is critical that students and their supporters understand the differences between these roles, so they choose a college with an AS office that best meets their needs.
  • Understand the role of being a LIAISON in accessibility services
    The role of being a liaison to faculty is the required role of the accessibility specialist.
    • Once a student contacts the AS office and provides verification of an IH diagnosis, the accommodations are determined and entered onto the Accommodations and Services Request Form (often referred to as The Checklist).
    • The Checklist is either sent to the student’s faculty with the student’s permission or it is given to the student to hand to those faculty members from whom the student is requesting accommodations.
    • The filters used to determine the accommodations are: appropriateness, legality, and reasonableness. 
    • THE KEY to determining whether the accessibility office functions only in the required liaison role is whether the AS gets involved in issues involving instructors and students. Accessibility offices that function only in the liaison role usually expect students to self-advocate and work with faculty on  their own — based on the assumption that doing so helps to develop a collaborative relationship with the faculty.  They do not become involved.

b. Understand the role of ADVOCACY In accessibility services
The advocate role reflects a philosophy that champions the student’s needs; the AS who works in that role acts as an ambassador for the student. The AS specialist takes the stance of  “I should know” when it comes to the diagnosis of IH, its symptoms, and understanding relevant accommodations for students with the diagnosis.

When working as an advocate on behalf of the student, the AS also carries out the requisite work of the liaison. There may be significant differences in what the responsibilities of both roles look like. When working in this role:

    • When necessary, the AS may go to the dean to champion the students’ needs.
    • The AS often takes the lead when it comes to accommodations and navigates with the faculty on behalf  of the SWIH. 
    • The Checklist (Accommodations and Services Request Form) is completed in collaboration with the student through conversations about the IH symptoms. Together, the AS and student consider how the symptoms affect aspects of learning and living on campus and the possible accommodations and supports that may help with the symptoms.
    • An accommodations letter often is co-written by the AS and student, usually each semester and for each faculty member.
      • The purpose of the letter is educational, and it makes no mention of the diagnosis; it does discuss requests for the necessary accommodations.
      • The intent of the letter is to create a partnership between the student, faculty, and AS office.
      • The student is provided copies of The Checklist form and the accommodations letters and decides whether to give a hard copy of the paperwork to faculty, and if so, which ones.


  • ONLY THE STUDENT CAN AUTHORIZE THE RELEASE OF THE ACCOMMODATIONS LETTER AND THE CHECKLIST TO THE FACULTY

Student TIPS!

No Advocacy Support?  Check Carefully Before Making Decisions!
If you believe that the accessibility office on campus functions exclusively in the liaison role and does not advocate on behalf of the students with professors and you need that support, consider discussing this need with the accessibility specialist. Here are some guidelines for your discussion:

  • Determine Accommodations: Are students involved in the process of determining accommodations in a proactive way? Are students expected to take the lead or does the AS specialist take the lead or share the lead
  • Consider Individual Needs: In what ways is the student treated as an individual? Will there be a conversation with the student about their IH symptoms and how they affect the student’s ability to meet academic requirements and function effectively on campus – academically and socially?
  • Be Flexible: How flexible is the plan on The Checklist in the event of a crisis?
  • Access Assistive Technology: Was the student informed about the assistive technology available on or through campus? Which technology is free? How is it accessed?
  • Involve Supporters: How willing is the AS office to work with families? Does the office limit contact in any ways, such as only to initial involvement?
  • Work With Instructors:
    What is the AS office willing to do when the student is having issues with instructors, e.g.,  when the instructors are not upholding the requested accommodations?
    If the same instructor teaches two sections of a course and the student needs to attend classes in the section other than the one in which the student is enrolled due to IH symptoms — but the instructor refuses to admit the student,  how is the student expected to resolve that need with the instructor?
    If the student needs to have the class recorded and the instructor is not willing to allow that, how is that issue resolved and who resolves it?
  • Access Counseling Services: Does the AS office refer students to counseling services or do the accessibility specialists provide those services themselves?
  • Access Accessibility Services: How available are the accessibility specialists to the student? For what reasons do they meet with them?
  • Be Aware of Differences in Policies on Campus:  Schools, departments, and professors may have their own policies about attendance, tardiness, and missing assignment deadlines. What is known about those policies on campuses and in your academic major?
  • Be Aware of Campus-Wide Attendance Policies: Is there a campus-wide threshold when it comes to the amount of missed classes, for example 20-30% maximum? If so, what role if any does the accessibility specialist take in advocating beyond the threshold for the student?

If the conversation with the accessibility specialist does not meet your needs, then you may want to meet with the dean of students to further discuss them.

Working With Accessibility Services

The advice in this section is provided by accessibility specialists (AS) who students have identified as working successfully with students who have IH.  In all instances, the AS actively advocated on behalf of those students. These accessibility specialists describe having good relationships with the faculty because they work with them regularly on behalf of many students.  For additional information on working with accessibility services, see Education Essentials Guide #1 Thinking about Academic Adjustments.

  • Know How to Work With Accessibility Specialists
    • Be open to discussing your IH symptoms with the accessibility specialist.
    • Work with accessibility staff to determine your levels of functioning in different aspects of college life.
    • Collaborate with the accessibility specialist to determine what information is passed on to which faculty.
  • Know How to Work With Faculty 
    • How You Reach Out Matters!
      • Arrange an in-person appointment with the professors.  This is considered CRITICAL to the student’s success (face-to-face onsite or remotely).
        • Don’t try to ‘catch’ the instructor before classes; instead, schedule an appointment during the professor’s office hours.
      • Not all faculty or professional staff are comfortable with self-advocacy, so it’s best to  keep the conversation and the focus on accommodations that will promote your success in class.
        • Discuss the supports /adjustments that are needed
        • Be as open as you are comfortable about your symptoms
  • Be Aware of these Realities Before Meeting With the Instructor:


  • Faculty members do not have a right to know your diagnosis, only the accommodations and supports you need to access learning.


  • The accessibility office cannot share the diagnosis with faculty; only the student can share it.
  • Know and Understand the Factors that Affect Decisions About Supports and Accommodations in Accessibility Services
    There are two factors to consider before meeting with the accessibility specialist:
    • First, the supports you request may be determined by whether the accessibility services office functions exclusively in the role of the liaison or also in the role of an advocate.
    • Second, many college students are not diagnosed with IH until they are in college. Consequently, they may not have had services while in high school and do not understand what is meant by the terms “supports” and “accommodations.”  For examples of such supports and accommodations, see the Student TIPS! section below.

Student TIPS!

  • Know the Supports and Accommodations Available to Students
    • On a Personal Level, SUPPORTS can include:
      • On-going support weekly/as needed from accessibility services 
      • Daily wake-up assistance by the accessibility services staff (offered on some campuses) who understand the challenge of bringing students who have IH to enough consciousness that they can function safely before leaving for classes.
      • Becoming connected to students who have the same diagnosis or symptoms
      • Becoming involved in a campus group developing awareness of invisible disabilities 
    • On the Administrative Level, SUPPORTS can include assistance in finding times for classes that are compatible with your sleep schedules, especially when block schedules are used and students need help finding: (1) classes offered later in the day; (2) a class in the academic major; or (3) when there is only one class or section of a class offered during the semester.
    • On the Academic Level, ACCOMMODATIONS often include the following; (For more information see Education Essentials Guide #1 Student Guide to Thinking about Academic Accommodations)
      • Excused tardiness to class
      • Flexibility with attendance, or, if getting to class is a problem, then “additional excused absences”
      • Providing class lectures/notes and assignments, either in hand or electronically
      • Testing in the testing center of the accessibility office to allow for appropriate and sufficient time to sit for the exam
      • Assignments submitted within a reasonable time if the assignment is late 

Student TIPS!

Something You Should Know:
Faculty Discretion When Implementing Accommodations

The information below was published by the accessibility office of a 4 year state university for the campus community. It provides guidance to faculty about the  discretion they have when implementing accommodations. Be sure to check with the accessibility office at your college about whether this guidance also applies to your faculty.

  • Extensions on Assignments
    Faculty retain discretion to determine what is a reasonable accommodation within the context of their course and are encouraged to consult with (accessibility office)  with any questions or concerns.
  • Flexible Attendance
    The amount of flexibility that is reasonable depends on the nature of the course, including its interactive or participatory components, as well as any departmental, university, or accreditation requirements. Faculty retain discretion to determine how absences are addressed, whether work can be made up, and how attendance or participation factors into grading. When attendance is a fundamental course requirement (e.g., labs or experiential courses), flexibility may be limited or not appropriate at all. Faculty are encouraged to consult (accessibility services) when questions arise, or when absences become excessive.
  • Recording Lectures
    Recordings are for the student’s personal study use only, and may not be shared, published, distributed, or used for any other purpose. Faculty may restrict recording during classes or portions of classes that involve personal discussion or student self-disclosure, at their discretion. Recorded content remains protected by copyright and must be deleted at the conclusion of the student’s enrollment in the course. Misuse of recordings may result in withdrawal of the recording accommodation and may be addressed through the (campus code of student conduct).

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4. Advice From Assistive Technology (AT) Specialists

(For more detailed information about assistive technology services on campus, see Education Essentials #4 Guide to Academic Resources)

If you want to access assistive technology (AT) on your campus:

  • You may need a referral from accessibility services to determine eligibility for AT accommodations; and the referral to AT services may result in an AT interview, evaluation, and training.
  • You will want to know whether the staff in the AT offices work as teams and whether their office is in or housed separately from the AS office
  • The AT office on your campus may provide:
    • Support for in-person as well as online courses
    • A shared communication platform with the capacity to provide remote teamwork for meetings, discussions, and shared documents.
    • Support to faculty as well as students; many faculty need guidance with accessibility etiquette, information about the types of AT accommodations, and awareness about the types of posted materials (content, PPPs, PDFs, etc.) that may not be accessible to some AT devices
    • A full listing of free as well as paid services for devices, hardware, software, APPs, etc.

Student TIPS!

If your campus does not have an AT center and you need AT accommodations and supports to access learning, do the following before considering another college.

  • Spend time on other college websites learning what resources AT centers provide their students and
    • Identify the AT accommodations and supports you need to access learning
    • Make note of which are free and which have costs
  • Discuss with Accessibility Services what you learned about AT.  If AT accommodations are approved by accessibility services, the college will pay in some instances.
  • If funding is needed for AT support, discuss these potential funding sources with your accessibility specialist:
    • Personal insurance
    • Division of Vocational Rehabilitation (DVR)
    • Veterans Affairs (VA)
    • Occupational therapy services
    • Grants
    • Campus-based sources such as your academic department or a campus-wide fund.

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5. Advice From Faculty

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.  Also, there is advice in this section from faculty who typically teach your courses — who do not have IH and may know nothing about it or the symptoms you live with.  You’ll find that not only are they providing advice but also providing insight into how things “work” on campus!

The VOICES of Experience and IH:
Insight and Guidance from a Professor Who Has IH

This full-time, tenured professor who has IH also wrote the Navigation Guidebook B: Advice for Navigating Learning in Higher Education.

As a professor, if I didn’t know anything about IH and a student came to me and said, “I might be late to class because I can’t always get up in the morning with my alarm. Can I be excused for late arrivals to class?” I would say, “Absolutely not!” The student’s story sounds fabricated. However, if a student made a point of coming to my office hours to explain their disorder, and if that student brought documentation from the accessibility office as well as articles or links from medical journals or the hypersomniafoundation.org describing IH, I would not only be willing to accommodate them, I would be impressed by their preparedness and pro-activeness.

I can’t help but to take it personally when a student yawns or falls asleep during my lecture. That’s all the more reason for you to communicate with your professors and educate them about your IH.

  • Request accommodations for IH from your university’s accessibility office.
  • Communicate with your professors. At the beginning of the semester, tell them, explicitly, that you are dedicated to trying your best, and that you are committed to succeeding in their class despite your IH.
    Many professors have hundreds of students in a given semester. Over the course of the semester, they might not remember that you’re the student who has IH. Again, this highlights the importance of continuous communication with your professors throughout the semester.

Insight From The Faculty Who Typically Teach Your Courses

This advice is given from the perspective of instructors who do not have IH or necessarily understand anything about the diagnosis or the symptoms, or what living with IH is like for students. These are the everyday faculty who instruct your courses.  They are affiliated with public and private colleges, including community colleges, state universities, and public research universities. Their academic disciplines include the humanities (English [argument, composition, pop culture, rhetoric], philosophy [logic, critical thinking], professional studies programs (counseling, human services, nursing, social work), psychological sciences, STEM disciplines (Sciences, Technology, Mathematics, Engineering), and transitional education.

  • Know What Affects Your Access to Accommodations & Supports
    • Testing Fees: Returning students can’t necessarily afford testing fees, and testing is necessary for determination of disability and accommodations and supports.
    • Military Paperwork: Military families may have disorganized or non-accessible paperwork which may not meet campus guidelines for services.
    • Referral Sources for Supports and Accommodations: Requests for some services, including requests to record classes or make up exams, may be made directly to the instructor; in other instances, the requests must be made through to the accessibility office. You will need to find out where you should go on your campus to request services.

Keep in Mind … College policies may determine who is involved in making the Determination of Reasonableness for accommodations and supports.

Sometimes the instructor is involved and works with the student and accessibility specialist in making that determination; other times, the instructor is not included.

This is a conversation to have with the accessibility specialist so that the student understands the reason for and implications of who is involved before the student makes a commitment to a course or an academic major

  • Sequencing of Course Content or Availability of Courses Many academic majors have a set sequence of courses so that content/skills mastery can occur progressively. The sequencing may not be as flexible as is needed by the student who has IH.
    • It’s important to become familiar with the courses that require prerequisite coursework and what that coursework is, which courses must precede or follow other courses, and the scheduling of required courses each term.
    • Not being aware of the sequencing of courses or that only certain courses are offered during particular terms can result in a delay of an additional term or year to take the required course; what could be at stake is access to the capstone class for your academic major, including a required internship, or your diploma when expected.Scaffold Learning Scaffolding refers to the course being taught systematically so that students move in progressive steps to ensure skills development and content understanding.  In that way, students will be able to demonstrate mastery of a more advanced set of competencies and knowledge by building on existing skill sets and current understanding of course material. For a more in-depth understanding of this approach to instruction and learning, see earlier Student TIPS! Something To Know:  Scaffold Learning in Advice from College Administrators.
  • Course Scheduling
    How courses are scheduled for an academic major is affected by a number of factors can result in scheduling being limited and inflexible. Those factors include but are not limited to:
    • College expectation for degree completion in 4 years, which faculty are expected to support
    • Availability of faculty to instruct courses
    • Scaffolding of learning, which affects which courses are prerequisites to other courses and when courses can be offered
    • Requirements for students outside of a given academic major to take specified courses in that major, which in turn may require coordination of course and faculty teaching schedules between the two academic disciplines.

The VOICES of Experience and IH:

The time of day can play a big factor, too, when it comes to accommodations and supports. STEM classes may be offered early in the morning. It doesn’t mean a student who has IH couldn’t successfully major in a STEM major, but the student would want to consider the fact that they may need more accommodations in order to succeed in that major.

  • Interdependent Learning
    • This form of learning occurs in courses where class members work with peers and thus depend upon them for participation in and completion of assignments, e.g., group assignments such as projects or examinations.
      • Class engagement can have an impact on the entire class, not only on the team or small group in which the student is involved.
      • The students usually negotiate a contract with the instructor during the first session of the course; contractual items include but are not limited to punctuality, attendance, active participation, and teamwork.
      • Courses that include interdependent learning include:
        • Clinical group work
        • Lab work (partners and teams)
        • Choral, instrumentation classes
        • Classes significantly incorporating role-playing
        • Performing arts (acting, theater, group performances)
        • Communications (not media)
  • Rank Of The Course Instructor
    This discussion is included so you may make sense of why some instructors are able to provide more and difference resources than others. Depending on the college, groups of faculty may have different resources available to them, which affect how they can assist students with disabilities. In general, tenure-track faculty have the most resources to support students (e.g., an office for meeting students, built-in time to provide support to students, in-office accommodations for make-up exams, etc.), followed by non-tenure track faculty and then adjunct faculty.
    • Adjunct faculty may be an integral part of the teaching team in academic majors but they may have very limited resources available to them to support students because of college or department policies or their teaching contracts. The following resources are often taken for granted and expected by students, but adjunct faculty may not have access to them:
      • An office or a designated space to meet with students
      • On-campus capacity to send emails
      • Advising hours built into their contract
      • Amount of time that can be spent with students outside of class (contract issue)
      • Contacting  students’ advisors (accessibility, academic, college access) via the campus messaging platform (contract or policy access issue)
      • Helping  when the student is physically struggling in class with symptoms (contract or policy issue)
  • Know Whether Accommodations or Supports Could Be Considered by Faculty
    Whether a student who has IH can be given by the accommodations or support they need by their instructors may have less to do with instructor’s willingness to give them than it has to do with any one of the following factors listed below:
    • Course design
    • Course and learning sequencing in the major
    • Quality of services provided by the accessibility office and assistive technology
    • Administrative and college-wide policies
    • Academic program policies
    • What the faculty contract allows (rank and faculty designation)

The VOICES of IH:
An Alum Reflects

Find the Best Path for Your Needs. Students who have been given accommodations or supports by their accessibility specialist expect to get them in their classes. However, that may not always be possible.  Very importantly, students need to “study” their academic major to be sure that it is a good fit with their interests and needs and, if so, then pursue the accommodations and supports.

Going into college I had planned to become a clinical psychologist in the hopes of ultimately conducting one-on-one therapy sessions as my main source of work. During my time at a practicum at a mental health center, I was able to sit in on several therapy sessions between a clinical psychologist and their clients. During these sessions I found myself having a lot of trouble staying awake. I often fell asleep multiple times during the hour-long sessions. The clinical psychologist was aware of my diagnosis and so was able to explain the situation to the clients if they were curious. I did make several attempts to find ways to stay awake during the sessions, such as excusing myself for a short break, but ultimately was unable to find an effective way to stay awake during the sessions.

Going through this experience made me reconsider if it would be possible for me to conduct one-on-one therapy effectively. I ultimately decided that due to the importance of one-on-one therapy being delivered in an effective manner, I would change my career goals to a related, but different field that would allow me to operate more effectively … I was concerned with the effect that this might have on someone that is already in a difficult situation … My experience with my practicum placement was an extremely important step in shaping my career path. Had I not experienced the struggles that I did in my practicum involving my sleeping disorder, I would not have shifted career path.

Accommodations and Supports Usually Given: 

  • Course catch-up sessions:  During office hours
  • Late papers (if professor has discretion to accept them; usually requires discussing need ahead of time and an agreed upon plan)
  • Podcasts: EXCEPT when there is confidential information shared by the students in the classes
  • Peer coaches: especially to review classroom work
  • Peer readers
  • Scribes
  • Tutors
  • Written tests taken after a missed in-class exam

Accommodations and Supports That May Not Be Possible

  • Attending class when experiencing Brain Fog:  Not all instructors or academic programs will allow students to attend the class while experiencing brain fog or sleep inertia. For example, students who are music majors may not be allowed to participate in class when instrument participation is expected, and those enrolled in labs using devices/tools or involving human interaction with subjects, research studies, etc.
  • Requests for independent studies
    • Administrative and academic program policies often determine who is eligible to enroll in an independent study.
    • Faculty contracts often determine if and how an instructor is paid to supervise an independent study. That may determine whether the professor will supervise a student for an independent study.
  • Requests for oral tests or group tests
    • Course or academic program policies may determine whether this is an option in a given course.
  • Requests for extended absences and missed exams in these learning contexts:
    • Scaffold courses:  Because courses taught in this way require self-assessment, students must take tests close in time to the missed exams to determine where learning didn’t happen and to be able to correct it to stay on track and understand the content in class meetings. For more information, see  Advice from College Administrators earlier in this section of this guidebook.
    • Discussion classes which are part of labs:
      The course sequence with labs in many academic programs is as follows:  Class-based learning, then discussion classes, then laboratories (labs). Discussion classes ensure the level of learning needed for the lab classes that follow. Frequently missing those classes would present problems; a peer coach approved by the faculty might be able recover the content missed during isolated absences.
      • Students are also graded on their ability to contribute to and/or lead discussions; tardiness and frequent absences can be very problematic when this form of assessment is used in an interdependent learning context.
    • Laboratory courses: All lab courses do not necessarily look like those in STEM courses, especially when the academic major focuses on human behaviors or issues. Regardless, lab content often builds on understanding of knowledge and skills developed in previous labs.  Missing or being tardy for labs creates a situation that is likely fraught with problems if earlier labs are not made up before the next lab, especially if taught in a problem-solving, small group discussion, or scaffold format.
      If the student is otherwise prepared for the lab (content class and discussion completed) but is not able to attend the lab, then it might be possible for the student to take the lab in another section of the course taught by the same instructor or a different instructor, during an open lab day, or using peer coaches. Some labs can stand alone, whereas others are based on incremental learning and must be taken in the designated course sequence.
    • Clinical professional programs that prepare students for licensing/certifications:  Academic majors in such fields as counseling, human services, nursing, and social work are required to take a series of classes and meet knowledge, skills, ethical behavior, and the professional deportment expectations of the field to be eligible to sit for credentialing exams prior to or after graduation. Consequently, students may find more structure and less flexibility in the design of these academic majors. Examples include:
      • The sequence of courses cannot be changed: Some classes are taught in a sequence that may not be flexible because of how learning is approached and ensured by the program.
      • Faculty often have responsibility beyond students;
        • Some clinical faculty are responsible for both their students and their students’ clients, therefore there can be no compromise with the level of professional challenge to the student
        • Safety issues – both physical and emotional – at the site and/or with the clients are a priority of the instructors and the academic program
        • If additional sessions are required to “make-up” work, the student may be charged extra tuition on some campuses for faculty supervision time.
      • The expectations of field-based clinical experiences:
        • Policies may prevent the student with brain fog or sleep inertia to be onsite for safety reasons. The field site decides which clients the student can work with and clients can refuse to work with students.
        • Client assignments:
          • Ability to work with groups of individuals who are very often sleepy themselves
          • Ability to work with physically challenging individuals who require manual lifting
          • Ability to work with depressed individuals
        • Required hours must be fulfilled, as determined by the clinical site, licensure requirements, and/or the academic program, whether in terms of the total number of required hours or daily schedule (Example: 7:00 a.m. start)
      • Preparation for national certifications:  Whether pre- or post-graduation, passing national certification examinations may require camera-monitored computer time for exams. These widely used exams may follow accommodation rules like those of the SAT and GRE. For example, you may have the option to request accommodations, BUT it is really important to note that in order to get accommodations, you may have to submit the paperwork (including documentation) weeks or months prior to the testing session.  The encouraging news is that licensing boards for medicine, pharmacy, nursing, etc. have been providing accommodations during state licensing examinations.

Student TIPS!

What can students do to secure the accommodations and supports they need to succeed in their academic major?
You now have a better idea of the challenges you may face to succeed in your academic major. However, there is no reason to be discouraged from pursuing your goals! We encourage you to use the guides (see below) in our Education Essentials Guides program for information, strategies, and support to reach those goals – because the guides are filled with information and advice from former college students who have IH and succeeded in meeting theirs.

Here are a few ways to make success happen!

  • Pay attention to the experiences and advice of the accessibility specialists who students have identified as having worked successfully with them. See Advice from Accessibility Services earlier in this section for that information. If the accessibility services office on the campus you are thinking about does not function in an advocacy role and you believe you need that support to succeed, then:
    • When you interview with the accessibility specialist, be clear about your accommodation needs and get clear answers about how they can be met – in writing!  See: STUDENT TIPS! No Advocacy Support?  Check It Out First Before Making Decisions!
      OR   
    • Consider enrolling for only a semester to see if the accessibility services office can meet your needs. Discuss this decision with your accessibility specialist to see if there is a way to work together to have your needs met at that college.
      OR
    • Look into colleges where the accessibility specialist functions as an advocate for students in addition to being a liaison to faculty.
  • Be a Team Player. In order for the accessibility specialist to work with instructors to accommodate your needs, you must work closely together.
  • Power Is Knowing. Though there are no guarantees about securing all the needed and wanted accommodations, you will have the answers you need up-front so you can make the best decisions for your education.
  • Work Backwards! If your academic major requires certification examinations pre or post graduation, be sure to look into the requirements to sit for the examination and the process for requesting accommodations – and look into those in your first year on campus so you know the road ahead.

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6. Advice from Counseling Services

The VOICES of Experience and IH:
Insight and Guidance from a Clinician Who Has IH

An experienced, licensed clinician and supervisor of clinical services at a university oversees university counseling services and instructs courses in psychological science. They have written the Navigation Guidebook C: Counseling Services for students who have IH and their supporters.

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.

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; and, be aware and understand the implications of the messages these students receive and their realities.


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7. Advice From Career Services

The VOICES of IH:
The Value of Field-Based Experiences

Internships are a great way to get an understanding of what your day-to-day will be like once you are out in the real world and to see if the environment is accommodating for your symptoms. I highly recommend doing an internship especially if your career services center has resources to find one.

Going through this experience made me reconsider if it would be possible for me to (do the work I planned on). I ultimately decided that … I would change my career goals to a related but different field that would allow me to operate more effectively…. Overall, I think that my experience was an extremely important step in shaping my career path. Had I not experienced the struggles that I did in my practicum involving my sleeping disorder, I would not have shifted career paths.

SUNY Stony Brook’s Advice for Students Who Have IH

Nationally recognized advisors and administrators in the Career Center at SUNY Stony Brook provide the advice in this section. They have also prepared a guide with an overview of career services for the hypersomnia community: Advice From SUNY Stony Brook Career Services.

Gaining Experience & Finding Internships/Work

Different people have different times during the day of maximal alertness. People who have IH need to know the best time-of-day for internships/work schedules to fit best with their symptoms. Talk with your sleep doctor about your symptoms and workplace fit. 

To the job seeker who has an IH diagnosis:

  1. Hone skills that align with independent work, such as writing, computer programming, design, data analysis, accounting, investigative / research skills.
  2. Prepare an e-portfolio to highlight your projects & accomplishments as evidence that your work product outcomes are high quality.
  3. Request quotes or testimonials from your references that you can use in your e-Portfolio and on your LinkedIn profile.
  4. Look for a work arrangement that allows self-pacing, where work would be produced within a flexible time period.
  5. Connect with the IH community to learn from others how they successfully manage work obligations.

The VOICES of IH:
A Student’s Experience

It can be really hard to find jobs that work for you! It can be hard to find remote work if you don’t know where to look … work-from-home opportunities is a great idea, but students who have IH may not know how to do that, even if it’s just to filter jobs on LinkedIn remotely.

These resources that may be useful to your job search, remote or otherwise:

  • Key Resource: The Job Accommodation Network (JAN)
    One resource you want to keep on your list of resources is The Job Accommodation Network (JAN).  It is the leading source of free, expert, and confidential guidance on workplace accommodations and disability issues and it is there to answer your questions about workplace accommodations and related legislation. Its consultants offer one-to–one guidance on workplace accommodations, the Americans with Disabilities Act (ADA) and related legislation, and self-employment and entrepreneurship options for people with disabilities. Source: Job Accommodation Network: JAN
  • Vocational Rehabilitation (VR) is a state-supported division of services that assists individuals in finding gainful employment and develop awareness of self-employment and telecommuting opportunities. The VR listing can be found at http://AskJAN.org/SOAR. In addition to VR, those states with separate agencies serving specific groups and those separate agencies can be found below the general VR listing on the site.
  • Google Tool for Veterans
    Check out the search tool that seeks to match skills developed during military duty with civilian employment created by Google. It has free job training resources available to you. Enter your MOS code and let the search begin!

STUDENT TIPS!
Considerations for Work in a Clinical Setting

There are a few important considerations for students who have IH to keep in mind and plan accordingly:

  • Job possibilities following graduation. Many positions in clinical settings such as mental health/social work/human services require a probationary internship in the field where accommodations may not be available.

    Also, your times of maximum alertness need to fit with the positions that are available. Although taking an evening position rather than one during the day may be a better fit, the positions may be hard to find.  We also know that later evening/night work can make symptoms (and life) much worse for many people who have IH, and it is not advised.

    Potential employers would be highly unlikely to tolerate the inability to show up when clients are scheduled for services or to not be able to stay awake and focused while working with clients.

  • Timing of IH onset matters. If the student already has finished the degree and perhaps already has experience, flexibility in a job situation may be more likely than if the onset is prior to graduation.

For additional information, see Education Essentials #9 Guide:  Resources for College Students and Supporters, Vocational Resources.

The Right Fit Gets The Final Word

It can be very frustrating to plan for a career and then face a reality you hadn’t planned on: that your academic needs aren’t a good fit with the academic program’s design. As many students who have IH have learned, there is more than one “right fit.”

The VOICES of IH:
Alums’ Experiences

Be Flexible in Your Approach to Courses and Career Path For me, the onset of IH was after I had chosen architecture as my major and completed a full term’s worth of courses. By the time I got the diagnosis, I was already in my junior year. But throughout my pathway to diagnosis, with all of the challenges of being too unwell to make it to class or do coursework for a large chunk of my awake time, I was still trying to meet the high demands of a curriculum that required me to do many hours of drafting and model building in studio classes. My presence and active participation were the aspects of the coursework that were crucial to thriving in the courses, and they were the very things I was unable to do when I was not feeling well. As a result, the first years of dealing with this mysterious illness were filled with me struggling to get extensions on coursework and withdrawing from several courses. The worst part of this was that I was overtaxing myself when I was well enough to do any work whatsoever which ultimately made my crashes harder and longer. Despite all of this, I was still determined to get an architecture degree.

It was only after I got my diagnosis and information about IH that I was able to step back and realize that dealing with my illness was not a temporary trial that I needed to push through. This realization led me to another: I needed to change my approach to choosing my courses and career path. Architecture was not a path that lent itself to remote work or to taking advantage of the time I spent awake with lower levels of energy. I needed to find a path where missing classes did not automatically mean missing coursework. For me that meant changing my major entirely because studio courses that required a high level of physical demand is a central pillar to the architecture curriculum.

Seek Field Experiences That Build on Existing Career Interests My advice for college students seeking to participate in an internship or practicum would be to find one that will most closely emulate their ultimate career goal. This will give them an opportunity to determine how their sleeping disorder might impact their performance in their careers. This will allow them to find intervention strategies that might work for them or, as was the case in my experience, let them know that they might need to seek a related career that will be a better fit for their individual situation. Figuring this out as a college student can be extremely beneficial, as it will give them the time they need to make the changes in their plan that they might need to make and will let them discover this in a learning situation, rather than a professional one. 

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