Sleep diagnosis

So, after many years of being aware of a problem with my sleep, I finally saw a sleep specialist. It was good to learn that whatever is going on can be figured out and treated.

What’s really frustrating is what led to me taking this long, and how much I’ve been shamed for having this disorder and how I’m yet still being shamed for having not taken care of it sooner.

I always had sleep problems as a kid. I could never get up in the morning. In high school I would always fall asleep in class, and got ridiculed for it. During summer programs, I would be singled out for always being tired, and punished for my supposed laziness. This continued into college, and continued into grad school. Developing chronic pain only made things worse.

Supervisors at work would chastise me for falling asleep at my desk because I’d nod off while waiting for something to build while sitting in the too-warm office. And would say that it was “disrespectful.” I learned to find places to nap and not get caught. But it always felt wrong.

I wrote many things about my experiences with drowsiness and fatigue. It informed my music and my fiction and my dreams.

Not once did anyone suggest that maybe I had a sleep disorder.

After many years of this I finally realized that maybe I do in fact have a sleep disorder, and I started reading up on it. The common knowledge was that there are two kinds of apnea, obstructive and central. What I experienced was much more aligned with central. The literature I found on it considered it to be untreatable and not worth treating, and everything on obstructive apnea shamed me for being overweight (and never considered that maybe I was overweight because of the apnea). So I held off getting it checked out; and anyway, I never had insurance that considered sleep medicine to be vital. I also saw some evidence that I might have narcolepsy, but I didn’t want to consider that as being the case because there is a lot of discrimination against that as well – revocation of a driver’s license, for example – and it’s a disorder that is often treated as a punchline to a joke. (Not that this would be the first thing about me to be treated that way.)

It just seemed easier to not want to measure things that couldn’t be treated, and I internalized more self-hatred around it.

The two years I spent working on my own, I could sleep when I needed to, and I felt pretty okay.

But then just over a month ago I started this new job and immediately my fatigue came back and my sleep became disordered once again, and I’ve been unable to stay awake when I need to and I feel a lot of shame every time I fall asleep at my desk.

So, finally, I have really good insurance, and am fed up enough with my issues that I finally made an appointment to see a sleep specialist. I announced this on one of my Discord channels, and I immediately got a lecture about how I should see a sleep specialist. And like, yeah, I know? That is literally what I just said I’m doing?

And then today I saw the sleep specialist, and the doctor talked over me a lot and kept on talking about obstructive apnea even though I’m like 98% certain it isn’t that, and at the end of the appointment asked me why I waited so long to get it investigated. And I explained, and she tried to shame me for not having done it sooner.

“Well I’m doing it now,” I said. She didn’t have a response for that.

Anyway. The good news is that I’ll be getting an in-home test soon, and if it’s an apnea it can be treated, and if it’s not I can get tested for narcolepsy, and there are things that can help with that too. And the medical understanding of both central apnea and narcolepsy has improved a lot, and there are many resources to help with that.

A diagnosis can help me move forward and reclaim so much.

I just wish people wouldn’t be so fucking smug about it.

(Oh and as an aside, when I mentioned using cannabis to help with my chronic pain and anxiety, the sleep doctor said I should stop because cannabis affects REM sleep. And I’m like, sure, but pain and anxiety affects it even worse. I did not want to get into a long-winded debate with her about that though. Anyway hopefully getting my sleep under control will help with those issues too, because ideally I’d not rely on anything for baseline physical comfort.)