It’s 3am on a Tuesday and my boyfriend sleeps soundly next to me as I contemplate getting up for the day. Tossing and turning since midnight, I have watched an episode of Gilmore Girls and listened to my meditation tracks. I have taken melatonin and CBD. I have ice packs and heat pads and yet I am still awake, and still in pain.
I check Twitter and as always there is an internet friend or stranger online if I search for ‘painsomnia’. Under the search title there will be a group of night owls discussing ailments or late-night snacks. It is reassuring to see that I am not the only one who lives with midnight pain. Recent research confirms what most of us sick folk knew already. One study showed that women with the pain disorder fibromyalgia wake up in the night twice as often as their healthy counterparts. Another showed that 70% of those who live with rheumatoid arthritis cite pain as the main cause of sleep disturbance. There are large swathes of chronically ill people who cannot sleep, which almost certainly impacts their ability to live full lives in daylight hours too.
I am in pain every day, like many others who live with chronic pain as a symptom of their chronic illness, but at night it somehow gets worse. Maybe it’s the lack of distraction – or the fact I max out on my pain med allowance by 6pm – but late at night or early in the morning the pain is so all-encompassing that I cannot do anything, even sleep. Olivia, 22 and living with fibromyalgia, shares a similar experience. “When I’m trying to fall asleep my mind will reject the idea of it because I’m in so much pain.” Sometimes I prolong bedtime, wasting time scrolling on the sofa or tidying my flat, just to put off lying down without distractions, which I know will result in little rest. I am afraid to sleep because I know there is a limited window before my body jolts awake to remind me I am unwell.
It is a cruel irony to wake up feeling like you’ve danced all night when you aren’t well enough to attend your own party.
Before I got sick I thought chronic pain was something older people complained about: my grandmother relaying her ailments over Sunday lunch, my mother’s dodgy knee from a teenage skiing accident. As I enter my 26th year and my fifth year of chronic pain, I have learned that there is no age threshold for illness. Olivia agrees. “I hate that I’m in my 20s and my nights are filled with pain and lack of sleep compared to peers. Even though it’s worse at night, mornings after can feel like epic hangovers.” It is a cruel irony to wake up feeling like you’ve danced all night when you aren’t well enough to attend your own party.
Although sleep disturbance is referenced by doctors who treat chronically ill patients, painsomnia is not recognised as an official diagnosis. It is a phrase coined by the sick community to explain an often disregarded facet of our everyday lives to others. Sleep is spoken about as a pillar of health. Books have been dedicated to good sleep practice and the science behind sleep and why we all need it it is plastered on billboards and advertising campaigns for mattresses. So why is it that chronically ill people don’t need good quality sleep, too?
Megan Rose is 21 and lives with Ehlers-Danlos syndrome, a whole body disease that disrupts digestive functions, joints and muscles and comes with multiple co-morbidities (additional chronic conditions that relate to/are caused by the other). She says that her doctors do not seem concerned that she doesn’t sleep. “It’s something they’ve never been able to help with, it doesn’t seem to be a focus to them that I can go days without sleeping. There’s always other things that need addressing more importantly than my sleep.”
Emma, 25 and living with multiple illnesses, says the same of her medical experience. After finding a medication that combated both pain and insomnia, she was told that she was “too young to be on it regularly” by her doctor, who rejected a repeat prescription request. Ageism is a common feature of our experiences with medical professionals, many of whom still believe that illnesses are in our heads or that our pain can be worked away with exercise and a positive outlook.
The regular pain experienced by people living with chronic health conditions is compounded by regular insomnia to produce the phenomenon of painsomnia. Often the nighttime pain is not responsive to our prescription drugs, which we may have taken earlier in the day in order to complete the mundane tasks of living. Painsomnia differs from insomnia (which I experienced myself prior to becoming disabled) in that it is the overwhelmingly loud feeling of physical pain that wakes you in the middle of the night. Many people know how difficult it is to function the day after a night of poor rest, let alone after multiple restless nights. When you factor in consistent physical pain, the end result of painsomnia is often unbearable.
We often lack the language to talk about our pain with enough precision to describe the specificity of the torment in which we are embroiled. Most people’s understanding of pain is acute: a bruise or a broken leg. People who experience periods know the monthly dread of pain but most have a few weeks of relief in each cycle; for them (unless they have a health issue linked to hormones), the pain is something you can prepare for. I describe my pain using objects or violence so as to elicit the adverse reaction in others that I have to live with myself. It feels like hot oil dripping, like barbed wire tearing, like scraping nails down my spine.
There are too many of us that are in debilitating pain every night, knowing it will return again the next day – sometimes with no break.
Melissa lives with trigeminal neuralgia, a condition often referred to as ‘the suicide disease’ because of the excruciating levels of pain it inflicts upon those who have it. She described her everyday pain to R29. “The right side of my face burns incessantly, like someone has been hitting my face with a flaming brick, a knife is digging into my ear, a weight is pulling down my jaw and my teeth are being removed all at once without anaesthetic. Bees are stinging my cheek.” These descriptions ring true across illnesses. Us sick folk know what Melissa means but healthy folk and, most importantly, the doctors who treat us, do not.
Speaking of how unfair it can be to have sleep exchanged for nights lying awake in pain, Melissa says: “There are too many of us that are in debilitating pain every night, knowing it will return again the next day – sometimes with no break. Incessant physical pain takes a toll on you mentally.”
New parents, overworked bosses and shift workers often speak of sleep deprivation. It is well documented as a (highly unethical) technique used by governments and military groups to torture confessions from prisoners, so we know what kind of physical and mental damage a lack of sleep can inflict upon us. Most doctors and sleep scientists recommend seven to nine hours of sleep a night; myself and the women I spoke to for this article average five hours at best. Consistently sleeping less is said to put people at higher risk of long-term health conditions like heart disease, diabetes and depression. It doesn’t bode well for those of us already living with medical records as long as shopping lists before we’ve made it to 30.
Painsomnia is another seemingly invisible experience that chronically ill people live with. It is torturous at times, neglected by doctors and falsely equated to just a bad night’s sleep. To most people it is unnoticeable, recognised only by deepening circles under the eyes or lunchtime naps between meetings. But us sick folk want the rest of you to know that while our friends are watching the sun come up on Sunday morning, many drinks down, we’re also awake in our beds, hoping for something to send us back to sleep.
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