Painsomnia: what is it like?

A quick note: If you haven’t heard of the term ‘painsomnia’ before, it is a popular one within the chronic illness and chronic pain online communities. Simply put, it is that state of existence in which you are enduring too much pain to get sleep. You can see examples of this on Twitter under #painsomnia.


Before I even hit the bed, my neck and back are killing me. I know that sleep will not come easily tonight.

I try to prepare, try to lessen the affect pain will have on my body by massaging my neck and back myself. I stretch my shoulders and upper back more than usual.

I could ask my husband to help with a massage, but I ask often enough as it is. I feel like a burden enough as it is.

Is it even fair to continue to ask him for help if it does little to ease the pain but does more to worry him?

Not tonight, not when he has to work in the morning.

I sit in bed, eventually laying down and trying to snuggle. My husband, it seems, has a hard time getting to sleep, too, though it’s likely from his morning nap and not from pain.

Ugh, pain.

I try to find a comfortable position for my neck but this pillow is too thick and that one isn’t thick enough. The pain contorts me, forces me into positions I wouldn’t dream of getting into during the day for fear of causing the pain I’m now trying to ease.

I sigh.

My lower back burns as though moved with the passion of a jilted lover, trying to reunite with my neck. The pain moving up my spine is something indescribable and I find myself at a loss for words.

Midnight hits. Though I’ve been in bed since 10 pm, the only reason I’m more tired is the ordeal I’ve faced in the last two hours.

I could take a muscle relaxer or an opiate. I have a small, precious supply of both that I’ve saved up over the years.

I can’t. I have to be coherent tomorrow. I have to get things done.

With that admission, I get up for a glass of water. I know full well that I won’t be sleeping tonight — at least, not in my bed.

I go upstairs. I think that, perhaps, I can utilize my lack of sleepyheadedness to work on schoolwork. For an hour, I do just that. I make progress on an assignment to turn in later this week and a few other odds and ends.

But now I have found that sleepyheadedness I was searching for three hours ago.

If only my body would comply.

I know that sleep still won’t come easily tonight. I will go downstairs to put on Playstation Vue and watch mindless cooking competition shows. I will try to get in a comfortable position and drink some Gatorade, the drink I continuously depend on for electrolytes and calories.

Sleep is calling me. Like my back working to meet up with my neck, I’m not sure that I can find her. Sleep is an elusive princess in a forest full of thorns.

I should’ve put on my suit of armor before venturing into the woods.

Kirsten is a writer and chronic illness activist living in Madison, Wisconsin. She is currently working towards her Master’s degree in Health Care Administration and Patient Advocacy. This year, her big project is launching an organization called Chronic Sex, highlighting how chronic illnesses and disabilities affect Quality of Life issues such as self-love, relationships, and sex. If you’re interested in helping with this project, please reach out or find the project on Patreon.

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