When I was diagnosed with Ankylosing Spondylitis (AS), my world was upended.
I lived in a state of shock for the first month or so, clinging to hope that the diagnosis wasn’t really what I had.
I talked myself out of it. Or at least I tried:
“I can’t have this incurable disease, can I? Maybe I imagined my symptoms, my pain, my fatigue – all those years of unanswered medical woes.”
I thought these things while also dreading the reality that I knew was true. This disease was with me for life. Period.
And then I learned I wasn’t alone. Everything I was experiencing – emotional, social, physical, medical – was being experienced by millions of strangers I would never meet.
I only realized, years later, the social progression of Ankylosing Spondylitis is something we all experience in our own way. We with the disease have conversations with ourselves, with our friends and family, with our disease community, our doctors, our medications, our side effects.
The social progression with this disease is real and normal and natural, yet lonely all the same. It happens in different ways for all of us, and it continues for the rest of our lives as we adapt and change and grow and … well, survive our own bodies doing their best to survive.
In the beginning, our fingers fumble with the medication pamphlets for the medications we fear but know are our best options. The potential side effects for biologics seem to levitate off the page in bold print, staring us down: “In some cases may cause tuberculosis, heart disease, certain cancers …”
Holy sh*t. I can manage this pain without those meds, can’t I? Are biologics really necessary? This can’t possibly be the best option for treatment. Can’t I just exercise? Take ibuprofen? Why this needle I have to jab into my body weekly for – quite possibly – the rest of my life?
After the NSAIDs don’t help, our doctors say, “Yeah, but biologics do more than help with symptoms – they’re proven to slow down the disease and prevent spinal fusion.”
“Spinal fusion!?” we whisper, shrinking back into the vinyl exam room chair.
And they tell us that exercise does help, but it’s best in combination with medications. And fusion isn’t as common as it used to be; after all, we have better treatments now.
We say, “Ok, yes. I’m desperate for relief. I’ll try it. Humira? Enbrel? Cimzia? Simponi? Cosentyx? Remicade? They all sound equally complicated to me. Which one is best?”
The doctors say, “Meh. Everyone reacts differently. It’s like throwing darts. Let’s just start with this one and see if it helps. Sometimes it takes a few tries.”
We only hear, “Meh. We don’t really know, but let’s play darts!”
“What if it doesn’t work?” we ask.
The doctors say, “Well, let’s check back in three months to see if –“
“THREE MONTHS?” we cry, “If it’s not helping I want to switch sooner!”
“Yeah, well, it takes that long to get into your system,” they say.
We sit in that first injection-training appointment with the nurse afraid to
pull the trigger push the button for that first sharp click and drain of drugs into our leg, our belly, our subcutaneous membrane …
That first time.
…skip to the conversations we have with ourselves:
“This is my first shot. It won’t be the last. This disease has no cure. I will be on treatment for the rest of my life. There won’t be an end to my treatments.”
But then medication helps – if not the first, then the second or third or sixth. And – those side effects? They’re required to be listed even if they’re quite rare.
And it feels better to feel better than to hurt more, even if the feeling better isn’t 100% better, and even if I only know it’s working if I have to stop taking it for a few weeks and all the severity of the symptoms flood back with full force.
The shots continue and we get braver. The jabs become normal – a weekly, biweekly, or every six-weekly thing. Part of the new routine, the norm, our schedule. “It’s treatment day!” we say, as we share selfies of injections or infusions and a smiling face that says, “This is my life in a sick body. This is me.”
Friends respond on social media,
“Feel better soon!”
“OMG, what happened?”
“Why don’t you just try yoga and kale?”
The first year we ask for a replacement spine for our birthday, and by the new year our resolution is to find a complete replacement body. We think about what our ad would say:
“Seeking a new body – no brain required, I’ll keep my current one. Price: I’ll pay anything to get rid of this thing and replace it with a new model.”
We begin to lose count of the number of times people send us, “Maybe this will help,” messages with links to “Yoga for Pain” or “Essential Oils for Arthritis” or “Virtual Reality Will Cure What Ails You” articles.
They’re only trying to help, but they don’t realize their unsolicited medical advice makes it seem as if we aren’t already trying. As if we don’t know our own disease. As if we don’t want to get better. As if we enjoy living with debilitating pain and fatigue.
We’ve tried everything already, don’t they know that?
Eventually friends “forget” to invite us to their weddings because we’ve backed out of too many plans last minute because of the unreliability of our bodies. We fade into the wallpaper of our bedrooms desperately waiting for a birthday party invite so we have something to look forward to hopefully not saying no to. We window shop online with ideas of outfits swimming in our heads for the events we never go to, as our actual day-to-day wear becomes more function than fashion: sweatpants and hoodies and t-shirts that say “Ankylosing Spondylitis. Not a dinosaur, but close.”
(PS – I came up with that phrase and will get a portion of the profit if you buy a shirt using this link. As you were…)
The conversations we find ourselves having with newfound chronic friends online revolve around flare days and bad doctors. Heck, maybe our newfound friends are the doctors – because we see them more than anyone else. We tell our families how excited we are about this new long-term relationship.
“Oh, did you meet online?” they ask.
“My insurance company hooked us up,” we say, “did you think I was telling you about a new romantic partner?”
The online groups we begin to be part of are centered around pain and ankylosing spondylitis, where people ask about symptoms, inquire about self-doubt, ask “What is AS, anyway?”, and beg for a cure. Where patients preemptively diagnose patients based on a brief description of symptoms (and sometimes a sudden gruesome picture) and other patients say,
“We’re not doctors … but you might have this thing.”
“That looks like psoriasis.”
“Try cannabis! It works for me!”
“OMG, I thought I was the only one who had that symptom! I get that too!”
We get to the point where we’re afraid of a sneeze. Because ouch – that jolting spasm feels like an explosion in our spine. A sneeze might paralyze us, or so it feels.
And we think, “I wish I had a disease more people knew about, like cancer,” and people respond, “How dare you compare this to something worse! It’s not gonna kill you!” But it can, we think, and death isn’t necessarily the worst thing a person can experience.
And really, all we meant was that we’d rather have a disease with greater awareness, social understanding, and research funding. We don’t really want a different disease; they all suck physically.
But socially? Awareness is more than half the battle we fight in our bodies, when the first thing we must do after telling people the name of our disease is prove to them it’s real.
As time races against our bodies, we grow to love our new family – Spondies, we call them. Our jokes about “stiff ones” and “stepping on cracks make broken backs” fade into normalcy as we adjust to new levels of pain we never imagined possible. Yesterday’s 9 on the pain scale is a 7 now – a new normal as our bodies learn to handle more and more pain.
Doctors give injections, saying, “This might hurt a bit,” and we chuckle to ourselves when all we feel is a ticklish pinch and then it’s done.
Our normal would make a healthy person think they’re dying.
Strength becomes a requirement, not a choice, as we learn to survive unimaginable fatigue and pain and an unrelenting disease that will never go away. Living-not-just-surviving becomes our motto, as we discover new passions or revive old ones and re-frame them to match our current abilities.
Health becomes relative to our place in the world as sick beings who rely on herd immunity during flu season because of our immunocompromised bodies. We’re not just afraid of the pain of our own sneezes, but also others’ sneezes in public places: on subways, planes, doctor offices, grocery stores.
A simple cold could worsen rapidly for us, sending us to the hospital with severe complications. Getting muggle sick could be deadly for us.
Our fancy filtered fabric face masks become armor and, whether people think the masks are for our protection or theirs, all that matters is they stay farther away. The masks offer an allusion of safety and protection against at least the largest germs as we speak with muffled fabric-covered voices to ask for the “4th floor please,” and ride the elevator up to our routine appointment with Dr. Rheum.
Nurses check our weight, blood pressure, temperature, and mood as we check to see if their shoelaces have been tied too tightly and ask how their kid is doing. We know which drawers contain what size gloves and where the medical gowns live. We know where the old paper from the exam table goes and when the biowaste gets picked up. We know the position to assume when the steroid shot in the upper hip is about to happen.
We know the smell of an exam room.
Our doctors greet us by name as if we’ve just arrived for a conference meeting. They are our colleagues now, our peers – our confidants. We also know more than they do about our disease, using our knowledge to fend our way forward to better treatment.
They ask us questions like, “How have the last three months been?” “Are you having any side effects from the medications?” “How’s your mental health?” “How has your stiffness in the morning been?” “Do you need any refills?”
They didn’t say we’d get a degree in chronic disease through forced experiential learning, but that’s where we are and instead of a M.D. we have an A.S. degree without even trying. We were born this way.
Rate your pain on a scale of one to ten.
Have there been any changes to your medications?
“No. Oh wait, I increased the folic acid.”
What are your allergies?
No, really, I’m allergic to doctors.
As we adjust to our new reality of disease, suddenly we’ve become experts, and professionally sick, and proud of how much we’ve learned about grabbing the good times and embracing radical self-care. We learn it’s not scary to identify as disabled, and that it makes sense to take advantage of assistive devices and accommodations that help us do more in the bodies we have while reducing pain and fatigue.
And when the newly-diagnosed reach out to us, we have a hand to give them, and a direction to point them towards, and the simple words, “I’m so sorry. You are not alone. I believe you.”
Because we know the importance of lifting each other up with realness, hope, and the profound connection that comes with a community of siblings simply by way of a lifelong disease called Ankylosing Spondylitis.
And our collective life goal becomes simple: refuse to be fused, or fuse responsibly. Because we are in control of our future, even if it’s just a little bit.
A note: AS is also known as Axial Spondyloarthritis.
If you’re living in ‘enoughness’ and would like to share some excess with me this season, I’d love a $3 tip at ko-fi.com/beingcharis. You can count on it going towards my survival, as I live in extreme poverty.