Pro-tip: if you have the opportunity, ask a friend to read this to you while you close your eyes so you can really imagine it.
There’s a thick rigid belt around your hips & a dull pitchfork attached to the inside being pushed firmly against your lower back, forcing your stomach to curve perpetually forward in effort to escape the uncomfortable pressure.
A steel wire strung between your sacroiliac joints (the back of your hips) – drilled into the joints with hot barbed-wire screws – is being slowly tightened across your back, pushing that pitchfork deeper into the base of your spine. It’s progressively aggravating a deep, aching, stabbing pain at the core of your being.
Your body is pulsing with a desire for relief. Anything.
There’s a rope attached to the outside of both hips. It’s being pulled backward, forcing your hips to open slightly outward and making your lower back fold in on itself even more. It’s unnatural, limiting your ability to move your legs. You shuffle step to fight against the simultaneous pushing and pulling from behind. Your hips are fighting to function, but they can really only move a fraction of an inch with each step with this pain and stiffness, so you swing your legs forward to walk. Forward movement is the only option to escape the pressure of the pitchfork, even as you are being pulled from behind.
Large, flat weights are hanging from the front of the belt around your hips, rubbing and rigidly pushing against your thighs, restricting range of motion and weighing down your legs. You can barely lift your legs to push them forward to take a step.
Walking is so hard. Every step hurts more. It’s jarring. Your hips don’t propel you forward, your back doesn’t pull its own weight, your legs are sacks of sand, and you can only manage with an uneven shuffle push-pull of your legs into position. It feels like your spine is settling, crushing in on itself as you jostle it into sediment or quicksand. Or, as Mick Mars puts it, “quick-drying cement growing on the inside of your spine.“
A harness is around your torso with adjustable arms pushing your shoulders forward and down with firm pressure. Some unseen force pushes up against your chest from below, forcing a hunched posture. It’s so difficult to fight the forces pushing and pulling from all directions. A ballet of torture, a constantly moving piece of art that is your body trying to live.
Someone’s saying hello on the sidewalk but your arm won’t go higher than a half-wave barely 6 inches above your waist. Your brain says, “Go home, rest!” but your desire to feel recognizably human says, “Say hi, it’s your neighbor. They are so glad to see you.” You don’t say anything because just thinking about possible directions the conversation could go drains your social ability.
Your feet are heavy bricks skimming the surface of the floor as you push-pull your body the 10 feet through your home to the couch. The couch. There’s a permanent indentation there where your body falls daily after trying to accomplish living.
Every single heartbeat echoes through your joints. Each beat ripples up and down your impaired body. You close your eyes and feel the thud of your heart on your eyelids, vibrating your whole body.
Duh dun duh dun duh dun duh dun duh dun
It would be a peaceful meditation if it wasn’t your body trying to recover from being human.
The effort it took to buy groceries, still in the trunk. Waiting.
You hope the perishables last another 30 minutes (you hope you can get up in 30 minutes) while you rest from driving three miles to scoot through a store for 20 minutes, grabbing whatever brand is closest because thinking about sales and price-per-ounce takes too much energy from your ability to make it back home. You pay more for groceries because of this – a necessary sacrifice for the energy you hope will last another 20 minutes to get you home.
You forgot the eggs.
You forgot the almond milk.
You forget because of the relentless exhaustion you can’t control no matter how hard you’ve tried.
Fatigue is the result of surviving your body’s attempts to protect and heal itself. Except it never heals because it doesn’t realize the protective mechanisms it came with only make it worse. Your body is faulty, broken, defective. It malfunctions. But it tries.
Fatigue rules every decision. Fatigue that’s caused by your body fighting never-ending systemic inflammation. Your body is tired of fighting this incurable, progressive disease.
Tired, as in your 24/7/365 reality feels like you just finished a marathon. Or got hit by a truck. Or raced a train by bicycle. But it’s really just from breathing and buying groceries.
Or taking a shower.
You experience fatigue that makes your legs buckle without warning. Fatigue that triggers cognitive dysfunction (AKA brain fog) and short term memory loss. Fatigue that turns words inside out and substitutes the wrong words for the right ones or removes words completely. Fatigue that is there when you go to sleep and there when you wake up.
Fatigue that makes you half-lift your arm from your waist in an attempt to wave at your neighbor who has just said, “Hello.”
You don’t want to tell her this is your norm after just going to get some groceries. You don’t want to tell her about your iritis or your gastrointestinal issues or your depression.
She might tell you to try kale and she’d rub it in your face. Or you’d find a yoga mat on your doorstep tomorrow with a note that says, “Yoga cured my dog, you should try it for your dinosaur disease. What’s it called again?’
Incurable is real. Breathe, neighbor.
Breathe…you try. You try to breathe with every breath.
Your chest is a bird cage, “an iron brace surrounding your ribs, pushing on your chest, painfully preventing you from breathing deep enough”
Thanks to inflammation in your chest, you live a life of breathlessness, of heavy sighs on autopilot (not sighs of disapproval of your cat, postal worker, or cubicle mate), of a just-having-worked-out-can’t-catch-my-breath reality just from sitting up in bed. Or peeing. Or just existing.
You are broken. Invisible.
You are whole in your brokenness. Invincible in your painful, foggy, exhausted, oppressed breathlessness.
You have Ankylosing Spondylitis, and you are not alone.
Breathe. Or try to.
Thanks for participating in this written simulation of Ankylosing Spondylitis. By no means have all symptoms or complications been mentioned here. Additionally, everyone’s experience with the disease is remarkably different and unique and spans a near-infinite range of severity and involvement (so please don’t offer treatment advice – we have a whole team of doctors for that). Ankylosing Spondylitis is common, affecting more than Amyotrophic Lateral Sclerosis (ALS), Multiple Sclerosis (MS), and Rheumatoid Arthritis (RA) combined. There is no cure.
To learn more about supporting a loved one or friend with AS, check out my post: Your Friend Just Got Diagnosed With Ankylosing Spondylitis. What the Heck?
To learn more about AS and related conditions, I highly recommend getting lost in the Spondylitis Assocation of America‘s website, overflowing with reliable and scientific/research-backed information.
If you found this post helpful, please consider supporting my AS awareness work with a $3 tip at ko-fi.com/beingcharis. Your support will help me buy some groceries.
10 thoughts on “What Does Ankylosing Spondylitis Feel Like? Try This Written Simulation.”
A very accurate description of the pain and exhaustion. It hit home when you mentioned grocery shopping, the task seems like a triathlon inside a war zone. The war zone being our body. Thank you .
Thanks for your comment, Dan. I’m sorry you can relate so well to this example.
So wonderfully written. Thank you for writing this and making those of us who also have AS/autoimmune conditions feel validated and less alone, and for educating and spreading awareness and understanding for those who don’t have it but are trying to learn more about it. It’s so important in both regards, especially given how invisible it tends to be! Best wishes xx
Thanks for your comment!!
My sons GF has AS. She is 23. I’ve said a few of the Don’ts “It’s not fair , you are too young etc…” oops!! 😬 Now I’m trying to learn as much as I can in order to be supportive. Still working on the pronunciation. Thank you for your articles, posts, your candor,your humor and your information.
Hi Jennifer, I’m so glad you’re willing to learn right alongside your son’s GF about the disease as well as about how you might be the most supportive! I’d love to get a report from you every now and then about how things are going. Really, thank you. We need more people like you to validate us as well as educate others. – Charis
My doctor is recommending dual sacroilliac steroid injections to relieve pain. Have you had this. If so does it help relieve the pain?
Hi Tony, I haven’t had SI steroid injections, but I’ve heard from a lot of people who have. If your doctor feels it could help you, and you’re interested in it, I hope you’ll know I support your decision to find relief wherever you can. I’m not a doctor, just as a disclaimer, but I do know that steroids are generally a short-term solution to treat symptoms, but they can provide a break for your body that is oh-so-important when the pain is relentless. Best of luck!
My cervical spine and hips are the current body parts that are being attacked! I am in a waiting room at this very moment for an MRI
OF MY cervical spine, unable to turn my neck to the left! Next month I am scheduled for a total hip replacement!
I feel hot most of the time from inflammation!
I have lost so much mobility, I do not resemble the person that I was before I became sick! So very tired most of the time!
Now….all this pain that seems to be popping
up wherever it pleases! I do feel as though talking to people is such an effort!
Most friends have stopped calling!
I need a housekeeper! My home is disastrous!
I feel as though my illness is causing my husband to become my caregiver and I have been reduced to the child!
But…….the pain and tiredness! Oh yes! Brain fog! Loss of words! Inappropriate words!
I am like, where did that come from?
I still get unconditional love from my grandkids! My mother-in-law of 30 years,
that is a different story! LOL
Thank you for sharing, Debra. Good luck getting results and treatment after the MRI. I hope you and your medical team can help you find some relief.