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These words are my diary screaming out loud

Tuesday, November 11, 2014

Guest Veteran's Day post for Hypersomnolence Hub

I was asked to write a post for Veteran's Day for the Hypersomnolence Hub blog. Here's what I came up with. You can also see it at

I am a veteran, and I have Idiopathic Hypersomnia. I've probably had it since I was born - when I was diagnosed, I called and explained it to my mother. She said it made a lot of sense. But getting to that diagnosis took a while. To be honest, realizing that my levels of tiredness, the difficulty I had staying awake on a regular basis, the amount that I slept, realizing that none of that was normal took the longest. But once I did finally get myself to a doctor, it took two more years and separation from the Navy before I finally had some answers.

I entered the US Naval Academy at 17, and spent the next 10 years in the Navy. Just as there had been for most of my life, there was always a reason for my tiredness - physical and mental stress, the lack of a regular sleep schedule, sometimes just the plain lack of sleep. It could always be explained away. I never thought that there could actually be something wrong with me. I was just not someone who could do well on a little bit of sleep, especially not for multiple nights in a row. I needed that rest. 

But then, in 2006, I went to a "shore duty" job - a job on land where I was working normal hours, 8-4 or so every day. I was going to bed by 9 at night, and having trouble waking up to my alarm at 6. On the weekends, I was sleeping in, and still waking up exhausted. I was falling asleep at my desk. For the first time, there was no reason for it.

So I finally decided asked the Doctor about it. Military medicine has a reputation, usually for not being too great. It's true sometimes, but I really liked the doctor I was seeing at that point, and I figured it couldn't hurt. So I made an appointment, and asked her about it. And she pretty much blew me off - "You're in the military, everyone's tired in the military." When I told her that it just didn't seem right, she said she'd test my thyroid. Basically, she was blowing me off.

Of course, my thyroid came back just fine. But I let it go. I felt pretty helpless. I knew that something wasn't right, but what was I supposed to do about it? I knew nothing about any sleep disorders other than sleep apnea, and even that knowledge was very limited. I had no idea how to advocate for myself, especially in the military medical system. And honestly, I wasn't sure I wanted to. There's a thing in the military that if you're going to the doctor too much, you're trying to get out of something. You're a dirtbag, you're lazy. 

Lazy. The worst four letter word for someone in the military. And, as it turns out, the worst four letter word for someone with IH. But I'm getting ahead of myself.

I got out of the Navy in 2008. When my insurance from my first post-Navy job kicked in, the first thing I did was go to a doctor and ask about a sleep doctor referral. In January of 2009, I finally got to one, and for the first time, I was talking to a doctor who didn't blow me off. Who didn't think I was trying to get out of something. Who didn't think I was just lazy. He immediately recommended a full sleep study - the overnight test that most people are familiar with, and then the daytime test the next day. Due to a cancellation, he was able to get me in within a couple of days. A few weeks later, I had my diagnosis: Idiopathic Hypersomnia.

I had no idea what Idiopathic Hypersomnia was, and it seemed like the internet didn't really either - there was very little information out there at that point. The doctor explained it as basically Narcolepsy without some of the clinical indicators required to actually diagnose Narcolepsy, and I was OK with that. It was an answer, a validation that something was actually wrong. That I WASN'T a dirtbag, or even worse, just lazy.

I started to look back on my time in the Navy, and so many things started to make sense. I so badly wanted (and let's be honest, I still want) to go back and find some of the people I had worked with and tell them - you guys, see? There was a reason! I want to go back to that Operations Officer who told me I could sleep when I'm dead, to which I responded by asking him if he knew how stupid that sounded, and say see? This is why! And I want to go back and find that Pakistani Naval Officer who realized one night while observing my watch that even in the craziest of conditions, I was having trouble staying awake, and instead of just watching for a few minutes, stood my whole watch with me and helped make sure that nobody else in that pilothouse noticed. I want to tell him that the Pakistani warfare device that he gave me is still one of my most prized possessions, and that I will never truly be able to express how thankful I am to him for that night. It could have ended very poorly otherwise.

From what I can gather, knowledge of sleep disorders in military medicine has improved a little bit. But, as is the case in civilian medicine too, it often just depends on where you are and who you see. The VA has greatly improved - when I first went to the VA to get treated through that system, they tried to send me to a psychiatrist, even though their own system had determined that my IH had nothing to do with PTSD. But when the Ritalin stopped working and I realized I wasn't going to be able to afford any other meds on my then-company's horrible insurance plan, I revisited the VA. In DC, they now have a sleep clinic with several doctors who know and understand multiple sleep disorders, not just PTSD-related Sleep Apnea or insomnia. 

Sleep is a funny thing. It can be your best friend and your worst enemy, sometimes even at the same time. With IH, that sometimes becomes most of the time. That was definitely the case for me when I was in the Navy and still undiagnosed. Now, with medication, it's better. 

So on this Veteran's Day, I ask that you not only think of all of those who have served, past, present, and future, but also I ask that you support efforts to improve the understanding and awareness of sleep disorders and sleep medicine. While I really would love to see the military do better with this, I think that if it's better understood as a whole, it will make its way into the military as well.