The Struggles of the Idiopathic Hypersomnia Sleepy Life

I am a 24 year old female. I should be in the prime of my life, right? I’d love to say yes, and forgive me if I come across as a negative person, but I believe I’m being realistic as I delve into my experiences.

Recently, I got diagnosed with a rare sleep condition called idiopathic hypersomnia (IH). The symptoms include excessive daytime tiredness, sleeping for longer periods of time than what is normal, sleep attacks, unrestful sleep despite getting “quality” rest, and from there it varies from person to person. Basically, I am constantly beyond exhausted.

An average person who does not struggle with sleep disorders would have to stay up roughly 48 hours to experience the same level of exhaustion I feel every moment of every day. I am prescribed stimulants to combat the sleepiness, but it feels like artificial alertness and often my body still fails me. Not to mention, it is easy to build tolerance to stimulants so they are basically a Band-Aid that eventually falls off because it can’t fix the real problem.

I can no longer drive because I experience sleep attacks at the wheel. I have lost the ability to work because this disorder has made the most simplistic tasks, such as standing long enough to wash dishes, an ordeal. As a person who used to run an average of three to four miles daily, I find myself frequently mourning who I was before IH crept into my life. I am now winded after walking for longer than 10 minutes and sometimes the exhaustion is so overwhelming, my legs give out. Some days, I sit on the floor because I cannot bring myself to stand up to get onto the couch.

To many people, I sound lazy. If I’d just exercise more and eat right, I’d feel so much better I am told. People do not realize I pay heavily for exerting myself, often remaining bedridden the rest of the day after having tried to take a 30 minute walk. But have I tried this supplement? It would give me so much more energy! No, trust me; I have tried every remedy, every technique, whatever else you can imagine, under the sun. I did not ask to be permanently exhausted, nor does it make me lazy or useless, despite what I previously believed.

Because it is a rare disorder, little is known about what causes it, which makes the diagnosis almost harder to swallow. “Idiopathic” literally means no known cause.

I find myself questioning if this is really what I have. Could the doctors be wrong? What if I am just lazy or it is somehow in my head? But then I think of how doctors have done MRIs, blood work, sleep studies, and many other diagnostic tests. There is no apparent cause other than I’m just doomed to be a tired person.

You know what though? Sure, it sucks that I don’t get to stay out late anymore, or go for long runs, or even work. The important thing is I have learned who my real supporters are. I have learned to appreciate the little things more. I have learned to not take anything for granted because you never know when it may be gone, as cliché as that may be. It’s true. I hope anyone out there struggling, finds relief in the knowledge that you are not alone.

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