A Diagnosis Is Just The Beginning

I was diagnosed with idiopathic hypersomnia in 2021, preceding an eventual diagnosis of Ehlers-Danlos Syndrome in 2023. But I first remember feeling “off” when I was 13 years old. It took me over a decade to finally receive an IH diagnosis, slightly more than the average 5-7 years. For some chronic illnesses, a diagnosis takes over a decade.

How an idiopathic hypersomnia diagnosis validated symptoms

For me, getting a diagnosis was confirmation that the exhaustion I had long been experiencing was not just in my head, or a normal part of getting older and being “stressed”. I wasn’t just tired, I was having to drink 8-10 espresso shots a day to stay awake.

There were weeks when I slept in my work clothes, bedroom lights fully on because otherwise I knew I wouldn’t wake up. I bought an alarm that literally jumped off my nightstand, forcing me to get out of bed.

It also didn’t matter how much sleep I got the night before, I always woke up feeling like I had spent the entire night before scaling a mountain.

I think about my favorite Brothers Grimm story, “The Twelve Dancing Princesses” who mysteriously wake up every morning with their shoes worn out despite being locked in their bedrooms. Like them, I awoke each morning completely worn out, with aching joints.

Not only was I exhausted but my stomach always hurt and I had almost no appetite. Even when I was hungry, I preferred collapsing into bed over having to cook a meal I probably wouldn’t even enjoy.

Idiopathic hypersomnia is more than just being tired

Eventually, I did undergo a sleep study and get a diagnosis, but that didn’t mean that the struggle and fight to get the care I needed was over.

Finding effective treatment

On top of what it means to be chronically ill, managing chronic illness takes a lot of mental, physical, and emotional effort. Finding doctors, getting on a waitlist, calling everyday to get off that waitlist, going to a doctors appointment just to realize that you ended up seeing the wrong type of doctor, trying alternative medicine (acupuncture? sure!), realizing your health insurance doesn’t cover it, filling out a reimbursement form, calling the insurance company and getting through the 20 different AI questions to eventually talk to someone in the wrong department and now it’s 5pm and they are closed. This is a regular Tuesday for someone with chronic illness. And it is hell.

Creating a fulfilling lifestyle

Something I’ve been thinking about lately is what it means to live a fulfilling life with a chronic illness.

Now that I have a diagnosis (or several) that doesn’t mean there is a cure or even a well identified path of treatment for me to follow.

Idiopathic hypersomnia is a blanket diagnosis for “excessive daytime sleepiness” and that looks vastly different for every single person who has IH. I think the key is to be very gentle with yourself and know that setbacks are inevitable.

I’m always trying not to push my periods of energy and stability too far. For me, this means that exercising too hard might mean I can barely get out of bed for the next week. So I have to move very slowly and remind myself that pushing it too hard is not worth the two steps forward to go four back.

Finding humor with life with IH

Sometimes I joke that maybe in a past life I accomplished way too much and this time around, the universe is forcing me to slow down.

Maybe I should take note from another favorite one of my favorite children’s stories, “Ferninand The Bull” who instead of fighting as his pedigree necessitates, instead chooses to sit and smell the flowers.