What It's Like to Have Sleepless Nights Because of Lupus


Part of living with lupus is knowing that your body lives outside of the norm. It means accepting that, for the most part, you have no predictable sleeping pattern. And, if you should be lucky enough to regulate one, it’s pretty messed up. Living with lupus means you don’t live on the same timeline as everybody else, as yours is dictated by lupus. Sometimes that leads to a feeling of isolation.

I’m no stranger to late nights and late-starting mornings. Going to bed close to midnight and waking up well after everyone else is my preferred sleeping pattern. But lupus takes it to a whole new extreme.

For many people, going to bed well after midnight sounds horrific. I am often asked how I manage to keep myself up so late. Believe me, it’s not my choice — it’s lupus.

I’ve tried tiring myself out with exercise, drinking herbal teas, reading books, watching TV, and even meditating. Sometimes these work. But most of the time, I’m left lying wide awake and frustrated. The only thing that seemed to work is knocking myself out with sleeping pills. But in the morning they leave me feeling hungover and unlike myself, outweighing the potential advantages.

In a bad patch, I don’t sleep until at least 1 a.m., and I’ll be lucky to rouse myself before 11 a.m. My body needs rest, and while it’s incredibly important to listen and help myself wherever possible, sometimes it means that I live completely out of sync with everyone else.

Some people take my extended sleep-ins as laziness. Others see me as lucky, wishing they could sleep in past mid-morning, too. But what no one understands is that it all comes at a cost.

Have you ever been wide awake, begging for sleep while the rest of the world rests blissfully and unaware? I have, and it’s an isolating place to be. When you’re exhausted but unable to sleep, there’s a silence that only 2 a.m. knows.

Some nights I lie there listening to episode after episode of “Big Bang Theory” and hoping this will be the one I fall asleep to. But the all too familiar credit track rolls around once again and I hear another episode begin as I lie there, eyes closed, yet so far away from reaching sleep.

It’s hard to explain the feeling of exhausted restlessness. You feel so alone knowing that the people who would help you in any other situation are fast asleep. You have to face this alone. I can’t justify waking someone up just because I can’t get to sleep. It seems selfish and mean. But I hate the silence and waiting.

There are moments when time flies and I wish I could hold onto it with both hands. And then there are times like these. Moments when every minute stretches on for hours and I can’t bring myself to check the time. It’ll only remind me of just how long I’ve spent begging the night for sleep.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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