IH in Education

When I look back on my life, I can easily identify moments when my perplexing sleepiness was actually due to a then-undiagnosed case of idiopathic hypersomnia. The problem was, I just didn’t know it yet.

One of those moments happened in 11th grade chemistry.

I had class every day at 11 a.m. I was a strong student overall, but I really struggled in this particular course, largely because I simply could not stay awake. I remember feeling so embarrassed as I nodded off, almost daily, while my teacher (a kind woman who was none the wiser) lectured. It didn’t matter if I was actively typing notes. I just couldn’t stay awake.

I would pinch my legs hard enough to leave bruises, just trying to keep my eyes open. I experimented with everything I could think of: changing when I ate my snack, adding electrolytes, eating breakfast earlier… then later, waking up earlier, going to bed earlier. I cut gluten out of my diet. Nothing worked. I just couldn’t get it right.

Navigating school before my idiopathic hypersomnia diagnosis

Throughout my journey with idiopathic hypersomnia, I’ve learned a lot about how to structure my life, my schedule, and my learning environment in ways that set me up for success. Looking back, there are so many things I figured out in college (undergrad then graduate school) that I wish I had known during my K–12 years.

One of the most important was accessing accommodations.

At the college level, most schools have a disability services office that supports a wide range of needs. For example, during my sophomore year, I qualified for on-campus housing with a kitchen so I could safely manage my food allergies. I was also approved for testing accommodations, like extra time and a separate room (initially for ADHD), even though I rarely needed them since many of my assignments were papers.

The point is that while you may not always use the accommodations you qualify for, having them in place can make all the difference.

Tip: Secure accommodations for IH early

My biggest advice is this: get your accommodations approved, even if you think you’re “fine.” Meet with your professors at the beginning of each course and let them know what you’re eligible for. It can feel like extra work (and sometimes uncomfortable), but it pays off when you need it most.

The best example of this came during my final year of undergrad in 2020.

My final project for one course was a research paper on the historical and anthropological importance of salt. About two weeks before it was due, I hit a wall. My exhaustion was on another level entirely. Looking back, I suspect I may have had COVID, as this was just the beginning of the pandemic, but at the time, I just knew I could barely stay awake let alone finish a major paper. I genuinely feared I might not graduate.

But earlier in the semester, I had a conversation with my professor. I had explained that I had medical issues and accommodations that could allow for extensions if needed.

Because I had been proactive, and because he understood my situation, he granted me a five-day extension.

When I got the paper back, I cried. He had given me an A+, a grade he said he rarely awarded, and told me I was an incredibly gifted writer. He even said I should send him my book when I eventually write one (so maybe I need to get on that).

Overcoming the fear of disclosing idiopathic hypersomnia

It’s not always easy to decide when to disclose that you have idiopathic hypersomnia.

Sometimes I worried that professors will see me as difficult, or assume I’m taking advantage of the system, especially because I don’t “look” sick most of the time. But every time I’ve chosen to be upfront, I’ve been glad I did. Because when things go sideways, and they have, I’ve had support in place.

Daily scheduling strategies for managing IH

There are also smaller, practical strategies that made a big difference.

Whenever possible, I scheduled my classes in the late afternoon or evening. I’ve learned that my most alert hours are typically between 3 p.m. and 7 p.m., so I tried to build my schedule around that window.

I also took advantage of “intensive” courses—shorter, multi-day classes that sometimes met on weekends. These gave me more flexibility and helped me spread out my workload in a way that worked better for my energy levels.
Living with idiopathic hypersomnia means constantly adapting, but it also means learning how to advocate for yourself, plan intentionally, and build systems that support your success.