Dealing With Sleep Shame

Ankylosing spondylitis has taught me something incredibly valuable — that one day will never be the same as the next. I used to think if I was on a streak of feeling good, that only good would follow. Good begets good, right?

The thing is, good doesn’t always lead to good

Sometimes good leads to bad. Sometimes you can do everything right and you will still have a flare-up. Sometimes you struggle to do everything right because life just gets in the way.

When I am sleeping well, I go to bed at a reasonable hour and I wake up bright and early. Sometimes it’s before 9 AM, so I stretch and drink water and enjoy the early morning sunlight. And then by the time I hit the bed, my eyes softly close. The pain is minimal and I just drift off to sleep.

Sometimes that sleep is even restorative (I know), and I wake up feeling close to human. (There are no days that I feel no pain, but some days are so much better than others.)

And then there are the awful days

The days where you toss and turn for hours at night, the days where you get out of bed simply because laying in bed is so much worse. These are the days when you sleep for hours in the morning and early in the evening.

The other day I went to bed at about 9:30 PM and I slept until 12 the next day. That was pretty extreme for me. There was just no rhyme or reason. Otherwise, I’d been falling asleep around midnight and waking up around 8:30. I just needed to sleep; my body was molasses and my mind was puddy. I simply turned everything off and fell into a heavy, woozy sleep, and then when I woke up in the morning I decided to turn over and continue sleeping.

As a full-time freelancer, I admit that I do have that privilege and capability. I realize that many others who have an office job or who work from home are not able to do so. I worked in an office until 2017, and leaving that job is one of the hardest and best things that’s ever happened to me.

Making this transition allowed me to focus on my body in a very deep way. But that doesn’t mean there isn't a sense of sleep shame.

I'm learning to not feel ashamed

When I talk to friends who do go to an office to work, I often feel silly mentioning that I slept until 10 or 11. I feel like they’ll think I’m lazy or unproductive. The reality is, I work hard as a freelancer — but I do it on my own schedule. And if I need to sleep, well, that’s why I went into freelancing to begin with. I want to dictate my own schedule, and luckily, my skillset allows for that. (I also wish employers would catch up to reality, and let people work on their own schedules).

That said, society teaches us to feel ashamed if we aren’t complying with social order. We need to look and behave a certain way in order to be perceived as capable or valuable. I’m still working my way through those feelings, but here I am admitting it: Sometimes I need a lot more sleep to manage my disease. Sorry, not sorry?