What it’s Like to be 1 of the 100 Million Americans Living with Chronic Pain
About me
For the better part of a decade my upper body was surging with stabbing pains, twisted up with knots, and tormented by constant, burning inflammation. While some of the more acute pains came and went, that smoldering ache never seemed to stop. It burned endlessly, like a coal mining fire.
At the ripe old age of 26, I had been diagnosed with a chronic pain disorder called Repetitive Strain Injury (just after running myself ragged during a twelve-week internship with Pixar). I landed the job, but so began both the beginning and the end of my seven year corporate career in graphic design.
Since I scrapped my big career for the long journey back in 2016, I’ve been testing out all kinds of alternative healing methods abroad (which I plan to write more about soon, so stay tuned). I’m now 35 and am overjoyed to report that after a solid year of unemployment, dedicated recovery work and round-the-world alternative healing explorations, I woke up one morning in March of 2017 to a body that was no longer plagued by pain.
While my time away from home has given me new perspectives on my illness and the theories and practices of modern medicine, this piece is not about that.
What the chronically ill may never tell you (and what the healthy, able-bodied typically aren’t able to see) is that the pain often infiltrates the whole story for us. It’s the through line, the constant, the main arc to the tragic, demoralizing plot that consumes our lives.
And for the vast majority of chronic pain patients, their happy ending has yet to be discovered.
About us
It’s hard to imagine, but there are more chronic pain patients in the U.S. than people with diabetes (21 million), cancer (14 million) and heart disease (28 million) combined. That’s about 30% of all Americans.
You probably don’t even know who we are, because we don’t like to advertise the state of discomfort we’re in, even on our worst days.
The pain isn’t something we’re proud of. We sure as shit don’t want to be treated differently than anyone else. So we’ve become professionals at hiding what’s going on below the surface.
But open our desk and dresser drawers, medicine cabinets, glove boxes and purses, and you’ll find evidence of our growing RX bottle collection. Like a chubby kid stashing candy bars, we’ve got pain killers and numbing agents hidden everywhere.
For some of us, the pills only turn the volume down on the pain, but can also effectively kill our focus and our motor skills for the day. They leave us covered in bruises from running into things, cloudy headed and at times incapable of simple undertakings. So we take half or a fourth of a pill, only when we’re really desperate.
But many start popping the opioids we’re prescribed like Tic Tacs, and find ourselves dangerously dependent on them. We gradually slip into addictions that could ruin everything. If we’re not careful, those pills may accidentally put us out of our misery, for good.
And while all this is going on behind the scenes, you probably think that we “look totally fine.” And if we ever decide to come clean to you about our health problems, that’s most likely the first thing you’ll say. But looking “fine” in your eyes is unfortunately no major consolation prize when our insides still burn like hell.
We’re thankful we don’t outwardly look how we feel inside, but it stings every time someone asks us what our secret is for staying “in such great shape.” We find it sad and disturbing that being sickly-skinny is still glorified in our culture. We miss the days when losing weight was a concern, when we had an appetite for food or for life.
We wanna tell you it takes everything we’ve got to get out of bed in the morning. That we haven’t slept right in years. That we struggle to force down a bowl of soup in a given day and are embarrassed by how our bones are sticking out of our chest.
Instead we smile and nod, thank you for the compliment.
We know that hearing about our pain will only make you uncomfortable, would leave you tongue tied or silent. And you probably wouldn’t believe us, anyway.
Even those who are closest to us don’t know what to say. How to help or support us. Or how to accept that they can’t fix it for us.
If they stopped to ask what it’s like — being sick for so long — we’d tell them that living in chronic pain is no fucking way to live at all.
Because the pain affects EVERYTHING in our lives.
Our overall health. Our relationships. Our mood. Our memory. Our focus. Our careers. Our energy. Our sleep. Our digestion. Our opportunities. Our sex lives. Our quality of life.
The pain hinders our capacity to perform simple, everyday tasks — like getting dressed in the morning. A lot of us stop buying clothes with buttons because our hands cramp up. We can’t wear things with those awful zippers down the back.
Much more important than our wardrobe, the pain affects the people around us, too.
Our parents: who worry and wanna know how we’ll survive in this economy if we get fired for all the sick days we take.
Our partners, spouses, and kids: who can no longer depend on us like they once did.
Our un-born or never-to-be-born fetuses: because the pain has robbed of us of our desire or our ability to have children. We’ve heard the heartbreaking stories about women like us who are in too much pain to lift their babies or breastfeed. We know we’d make terrible parents in the state we’re in.
Our coworkers, bosses, and supervisors: who are forced to work around our pain and appointment schedule, to pull the extra weight we can no longer manage.
Our friends, our lovers, the people we attempt to date: who are frustrated by how often we have to cancel plans. If they haven’t already, they’ll likely ditch us for someone less flakey and more able-bodied soon (and we don’t blame them for it).
Our pain dictates our every move and activity.
It seems like all we do anymore is go to work and come home to lick our wounds, like we’re stuck in a constant cycle of damage and repair. But we try to drag ourselves to every appointment, no matter how bad we feel. We get up early, take three bus lines to get across town and back before work. Rush to a doctor’s office on our lunch breaks so we don’t fall too far behind.
Each therapist has their own theories and methods for getting our hopes up. They tell us we’re a great, dedicated patient. They cheer us on. But any progress we make stagnates and eventually capsizes, and then it’s time to try something else.
Our doctors give us advice that seems contradictory, counterproductive or absurd, but we’ll try anything. We’re desperate for relief, even more desperate for a cure. One practitioner says to put heating pads on our aches and pains, the other tells us to ice it. One of them prescribes exercise, another inactivity.
A new doctor tells us to avoid running, jumping, dancing, swimming, driving, biking, cooking, typing or any other activity that uses our hands or puts pressure on our spine. Oh yeah, and we’re supposed to somehow avoid walking up hill, too. But we live in San Francisco, have you looked outside? we say, trying to keep our sense of humor intact.
The good doctor doesn’t so much as crack a smile. Find some good TV and a couch you can lay out on, she says. And she’s serious.
We do what we’re told.
When we’re not at work we lay on that fucking couch, for almost a complete year, but the pain persists. Now we’re weak and atrophied and have never felt so hopeless or pathetic or alone.
One Saturday afternoon we throw out our back, trying to rearrange the living room furniture because of the glare on the TV. We can’t bend over in the shower. It takes us an hour to get dressed. The pain is so bad we can hardly breathe. We go for an emergency session with an acupressurist, but it will get worse before it gets better, she says.
Our condition has gotten so bad that our primary doctor finally grants us a short release from work, but only for two weeks. Don’t expect the insurance company to sign off on this kind of thing again, he says, it’s frowned upon.
The two weeks go by in an excruciating, doped-up blur. It feels like bad reality TV has seeped into our nervous system, like all the fake fighting and drama is making us anxious and spiteful. Like we’re starting to hate the human race. Even though all those rich, bitchy housewives of wherever kind of feel like friends, we have to get up and turn them off.
We’re going outside for a slow, careful walk, even up hill. We don’t care what that fucking doctor says anymore. We feel like our minds are rotting out, like we’re going crazy in this fucking room. Like we’re gonna die in this sad, trashed apartment.
The doc in charge of our worker’s compensation case seems irritated with us, more annoyed with every passing month when we come back to report that we’re still in pain.
He’s offered us all the treatment options he knows of for our condition. He’s going to have to classify our injuries as permanent at this time. But we’re only 28 years old. We let the prognosis tightened around our stiff neck like a noose. We cry ourselves to sleep again.
We’re dangerously depressed. Sometimes suicidal. We think about downing a bottle of muscle relaxers, hurling our broken body off the Golden Gate Bridge (we know, what a fucking cliche).
What we’re most desperate for right now is the first thing we lost when the pain arrived: our ability to sleep.
We try talk therapy for our nerves, we attempt to meditate, we wear Breathe Right Strips to bed, we buy a white noise machine. We take a rotation of melatonin, muscle relaxers, anti-anxiety meds and sleep aids in the evenings.
But we stop taking all of them when a new doctor gasps at our chart, realizing that the drug cocktail we’ve been prescribed could be fatal. Lunesta and Xanax is the combination of drugs that killed Heath Ledger, she says, something that the doctor who wrote both scripts forgot to mention. At least we know now that we don’t really wanna die.
Fewer drugs is better, less muggy brain syndrome. Less damage to our bank account, we think.
Being in chronic pain is expensive. Not just for us, but for the companies who employ us, and for the insurance companies who back them.
We’d be willing to bet you all the money we’ve spent on drugs and dead-end treatments that our pain hurts the national deficit. And the health of the world economy, too.
We’ve become a walking drain on the system.
Speaking of money, we’ve been offered a settlement check. We’re shocked by how small the amount is. It doesn’t seem like it would last us five years — with all the treatments, meds, copays, special gadgets and equipment we require to stay afloat each year — let alone for the rest of our lives. But we don’t have the know-how or the energy to deal with a lawyer, so we take it.
We keep looking for new doctors and specialists on our own, trying any kind of alternative medicine we hear about. We agree to see yet another physical therapist that the company nurse recommends.
This new person wants to know if it hurts here, or if it’s sore there. Well the answer is still yes. They wanna know what our pain feels like on a scale of one to ten. Between a 6 and 7, we think. They ask us to circle the spots where it hurts most on another diagram of a human body — the image of a man, of course.
They wanna know what position we sleep in at night, what kind of desk we use at work, how often we’re on the computer at home, how much time we spend on our iPhone.
They don’t seem to care about the stomach cramps we have after every meal. Or how often we get knocked out by colds, flues and bizarre infections. About the weird rashes, our recent case of vertigo and our swollen eyes. They aren’t interested in hearing how weak our immune system has become.
They don’t even seem that concerned about our medical or family history. They definitely never ask about our mental health or back story.
And they don’t make promises about how their treatment could help us recover anymore. The therapy is more to keep our pain levels down, make life more manageable, they say.
They tell us to lay on the floor and make tiny, repetitive movements that don’t seem to do a damn thing. They want us to complete a whole routine of microscopic exercises that takes an hour and a half every night.
They mention that we’re more susceptible to this condition because we’re hypermobile (a fancy way of saying “flexible”). That we’re prone to this kind of illness because we’re female, something about our nervous system being on hyper-drive.
Despite everything, we refuse to accept that this is all there is. That this is how we’re going to live for the rest of our fucking lives.
We keep looking for some therapist who will tell us what we want to hear again: that they can help us get better. To actually recover.
We want someone to explain why this is happening to us. We wanna know what we did wrong. Why we deserve to be in so much pain.
But not a soul on this planet seems definitely able to tell us why; that seems to be a mystery we have to somehow solve for ourselves.
Once a Rust-Belt tomboy with an unlikely American dream, Cassandra worked as a competitive designer in San Francisco for seven years (for clients like Pixar, Coca-Cola, Samsung, Xfinity, Amazon and Google) before scrapping it all to pursue a Hail-Mary healing journey abroad. She now lives the life of a world-traveling freelancer, budding filmmaker and vocal advocate for social change. Her writing about gender equality, chronic pain, alternative healing and travel can be found on The Trigger Point Chronicles; her musings and methods for meditation and self-actualization can be found on The Human Beta Test facebook page; and you can see her travel images on Instagram @cassandra.smolcic.
