So, yeah - this is another break from hermit crab essays. (Rests are healthy for those of us with invisible illnesses)
Ironically, this essay was harder for me to write than many others. Acknowledging that I need help or that I’m imperfect doesn’t come easy. And now I’m writing it out for the world to see. (Document this on your calendars - you probably won’t see it again)
My Body Rejects Me - But He Doesn’t
My husband picked up the trashcan and swept the growing pile of bloody tissues off the counter without saying a word. Apologies for keeping him awake rose to my lips, silenced by a sudden stab of pain through the left side of my head.
Kneeling beside me, he took my free hand and squeezed my fingers. I tilted my forehead where it rested on the cold tile as a pseudo ice pack and looked into his red-rimmed eyes - testament to the late hour and his exhaustion. This was a week for the record books: My neurologist scheduled an EMG to check for cervical nerve damage, the dentist warned of a potential fracture line in two of my molars, I suffered six bouts of nausea following the meals I actually remembered to eat, and now I was sitting through the worst nosebleed in memory.
I looked at our twined fingers, guilt forming a knot in my throat.
Proper wives didn’t keep their spouses awake by jamming tissues up their nostrils. Or recite doctor findings during television binge-watching. Or push plates of delicious food away. Despite the comical vows detailing my disaster of a body that gained appreciative laughter from our wedding guests - and the deliberate omission of any references to “better health” - I was failing every expectation of marital partnership.
“You should trade me in for a better wife,” I said quietly. “One who isn’t defective.”
He passed me a fresh tissue. “I can’t. I lost the receipt.”
Snorting a laugh under the circumstances made a mess, but his words broke the depressive spiral of my thoughts before they condensed into their usual whirlpool. “What’s that supposed to mean?”
“I’m stuck with you until everything falls apart.”
Tim understood - abstractly, at least - what he was getting into from the beginning of our relationship. At 39, I no longer harbored illusions of Prince Charming riding up on a white horse to whisk me off to “happily ever after.” All I wanted was someone who understood my body attacked itself, resulting in symptoms ranging from migraines to GI troubles to an inability to move. Explaining any invisible illness, much less fibromyalgia, to someone outside the medical field felt impossible. And I needed to add a long list of other diagnoses and procedures to the discussion.
Mine was a defective body, devoid of pieces and parts most people retained into their “golden years.”
I expected him to turn tail and run; plenty of other dates had already set that precedence.
But he took everything in stride. “Give me the shortlist: Tell me what organs you DO have,” he quipped. While I braced myself for a miserable discussion of my health, he smiled and turned it into a joke. Not condescendingly, either. The look in his eyes showed sensitivity to my concern, my anxiety. He wanted me to laugh. And as I rolled my eyes and smiled, I recognized the underlying message in his words:
I’m not going anywhere.
Agreeing to marry him when he proposed a year later was nothing short of common sense.
But my body seemed determined to test his resolve.
“Are You Ready For It?”
I agreed to the removal of my right ovary, determined to avoid further cysts, but I never volunteered for the accompanying seroma. The pocket of fluid under my surgical incision made me question the necessity of breathing.
It also pushed Tim to the limits of his tolerance for the insane pain levels I forced myself to endure.
He frowned through two days of wincing, whimpering, and hunching over as I walked. He allowed me to shrug off recommendations to contact the doctor. My insistence on dragging myself to work even passed muster. But when I couldn’t catch my breath after a coughing spell on day three, he put his foot down and ordered me into the car. Before I could form an excuse, he had my shoes laced, and my jacket zipped.
I grumbled protests the entire drive to the ER, slouched unsafely in my seat.
Friends and family will acknowledge that I’m the worst patient on the planet, but he had no first-hand knowledge or experience. At one point, he started in with the familiar parental threat. “If you don’t stop complaining...”
I ventured to finish the sentence with, “You’ll turn around?”
“I’ll speed and explain your stupidity to the officer that pulls me over.”
To this day, I’m uncertain about the humor in the statement. But everyone who hears the story finds it funny as hell. (Of course, they also side with him when I protest his actions)
Hospitals and I don’t mix.
I have nothing against medical staff - nearly everyone I meet or encounter ranks at the top in terms of professionalism and courtesy - but I’d rather enroll in Boot Camp than spend a single night as a patient. Throw intense pain into the mix, and no one wants to spend more than a few seconds in my company - regardless of personality or training.
Tim attempted to stay with me for hours at a time.
Neither of us is religious, but he qualifies for sainthood for his efforts.
I blamed him for my resulting hospitalization. He drove me to the ER, after all. Had he simply allowed me to writhe in pain, I wouldn’t have faced another surgery. (Pain logic is the best logic)
I refused to hold his hand when he sat beside my bed. Turned my face aside whenever he attempted to kiss me. Pretended an intense fascination with the drivel on the television when he tried to engage me in conversation. Ignored him each time he said, “I love you.”
I hurt, I was frightened, and I blamed the only person foolish enough to present as a target. My parents and siblings wisely contented themselves with phone updates. Not even the news of my trip to the OR prompted them to set foot in that hospital room. They knew my patterns too well.
If Tim wanted to sacrifice himself to my ire, that was his decision.
As he helped me get dressed on the day of my discharge, I almost missed his words, “You weren’t kidding when you said you’re a terrible patient.”
I waited for the other shoe to drop, expecting him to ask for the engagement ring back. He’d endured the complete nightmare of the worst my malfunctioning body could produce. Why would he marry me now?
In that first fateful discussion, I’d warned him fibromyalgia had no cure. Did he honestly want to face a lifetime of events like this? Struggling to get me into hospitals and enduring my fear and anger at the breakdown of my system?
He took my hands and sat beside me, ensuring I met his gaze. “You know I love you, right? It hurts for me to see you in that much pain, knowing I can’t do anything. Can you at least let me do what I CAN do? Let me sit with you and try to distract you?”
“Can I still be mean to the doctors?” I asked.
“A little mean?”
“One mean comment a day.”
The Caretaker Paradox
Caretakers play a critical role for those of us with invisible illnesses. Caretakers SEE us when the rest of the world dismisses us - save for those who raise eyebrows at the disabled plates on cars, wheelchairs, or canes.
People who genuinely care avoid toxic positivity statements like, “Everything will turn out okay” or “You look fine.” Phrases that cause us to cringe. Tim has never suggested we take up yoga or spend more time in the sunshine. Nor has he curtailed our activities or swaddled me in bubble wrap, frightened I may push beyond my limits. He understands what I need to hear and feel to continue through every diagnosis, procedure, and recovery.
His ability to negotiate that balance astounds me.
But our relationship is a two-way street.
If I forget the psychological and physical strain he goes through in our lives, I leave him struggling with higher stress levels. And until that moment in the hospital, I never saw how my fight against pain and refusal to ask for help impacts HIS life.
I lived for so long in the isolation of my body’s reality, resigned to what a life of pain consisted of. Confronting the emotion in his eyes made me realize that agreeing to marry him, to become a partner to someone else, meant accepting HIS part in my illness.
It’s changed how I respond to the low points of my fibromyalgia.
In the past, I refused to acknowledge the intense pain shooting through my body. With every muscle and joint locked up and screeching in protest, I continued, determined to appear as normal as possible. Never mind the resulting consequences - or my foolish outward appearance. My deluded mindset convinced me no one could see my stumbling gait, gritted teeth, or sunken eyes.
Certainly not my devoted husband.
Now, though, when I look up on walks or hikes and see his raised eyebrows, I know to nod and admit, “The body says ‘no.’”
He smiles and says, “Defective.”
Then he takes my arm and helps me find somewhere to sit. Or gets me to the car via the fastest route. Drives me home and settles me on the couch with my trusty heating pad. It doesn’t matter what we’re doing or how early in the day my system craps out. He knows I need to stop myself from going beyond those critical limits.
He doesn’t want me to reach a point where he’ll watch me struggle.
And the laughter, the jokes, and the careful fussing reinforce the same message they always have: I’m not going anywhere.
Even if it means he needs to stay up late to sit on the bathroom floor and hand me tissues.