There’s Something Wrong with My Body, But Doctors Can’t Tell Me What It Is

What it’s like to live with chronic pain that’s gone unexplained for years

Writer Stephanie Harper on experiencing long-term unexplained chronic pain

When I was five, I stuck a balled-up piece of tape up my nose, because, I can only reason, I could. I remember the exasperated sigh of my teacher, an older woman who already disliked me for being too hyper (she suggested more than once to my mother that I should be medicated). I remember my pediatrician, a kindly man who always wore baggy, oddly patterned sweaters in neutral colors, preparing to suction the tape right out my nostril. Thankfully, my memory stops there.

When I was six, having not learned my lesson, I swallowed a rock just to see what would happen. It was a smooth stone, green and black, something I’d found on the floor of my first-grade classroom. I didn’t say anything until I got home and mentioned it to my mother. She seemed more flustered than concerned, but called the pediatrician just in case. He said the rock would likely just work its way out of my body but gave a list of symptoms to watch for in case it got stuck. My mother and my teacher worked together to observe my poop and watch for the missing stone. I had to alert an adult every time I went number two for inspection until the rock made its grand reappearance.

My keen interest in what was happening inside of me never went away. I loved learning about puberty. I’m still mesmerized by the way the colors of my bruises change, a living watercolor on my skin. The first time I got a staph infection (from a burn from a curling iron) and watched the red streaks grow across the flesh of my arm, the doctor drawing around the edges with a marker, I knew that this was serious, but all I could think about was wanting to go to bed so I could see how the blotches transformed in the morning. I’m aware of every mole and blemish, and pop blackheads and acne, even when it makes my face bleed. 

Maybe because of this fascination, I have always been acutely aware of what’s happening with my body. I’m sensitive to even the slightest changes. This has proven helpful over the years in that I can detect the early onset of certain illnesses like sinus infections and bronchitis. Once, I was in my immunologist’s office and I knew I was developing a sinus infection, feeling the familiar plug of fluid in my ears, always a telltale sign, along with face pain. I asked if he would write me a prescription for a Z-pack, save me a trip to my primary care doctor.

He looked at me over the rim of his round, wire-framed glasses. “How confident are you based on previous experience that this is the start of a sinus infection?”

“98.5%”

I left with a prescription.

This keen understanding of my body isn’t always a good thing. Sometimes, it’s also a nuisance, an obsession even. Not too long ago, I noticed for the first time that I have an indentation on the top right of my skull, about two inches long, like a dent or crevice. I convinced myself, am still convinced, that it developed suddenly, that there was no way that I hadn’t noticed it before. I googled possible causes and scared myself so much that I pointed it out to a doctor at an unrelated appointment. She was unimpressed. I still reach up and check it at least once a day, just in case.

I do not wholly believe that we can physically manifest things if we just think about them hard enough. But I do wonder if I was somehow prepared to have a sick body. Maybe I have always known that something was off inside of me. I recognized, somehow, that I needed to understand my body, would need to understand someday that my body was different. I don’t know if everything now was somewhere inside of me from the beginning, but there is something like comfort in thinking that my weird little fixations might have been a continuous lesson in equipping me for my present reality.

I’ve been in a battle with my body for a long time. I don’t like this analogy. I’ve never identified with the “pain warrior” thing. I don’t like to think of my body as an opponent. I am trying to work with what I have. Still, all of this does feel like a battle sometimes, like dragging a bag of bricks up a hill. Why do I have these bricks and why must I get them on top of a very steep hill? I cannot tell you. I just know this is what I must do and so I am doing it. The futility is not lost on me.

My journey uphill began in 2008, with all-over body aches and pains, tingling and numbness in my extremities, red rashes and hives from the sun, insomnia, and extreme fatigue, among other things. I saw a neurologist first and then a rheumatologist. The rheumatologist ran every test he could think of, looking for signs of inflammation in my body, inflammation I could feel was there, but the blood work came up negative. No lupus. No rheumatoid arthritis. No long list of any other possibilities. He was stumped and I was defeated.

He took my hands in his and said, “I have been doing this for a lot of years and you have the hands of someone who should be seeing a rheumatologist.”

This felt cryptic and obtuse. I wanted to say, “Help me then,” but I didn’t.

He added “possible fibromyalgia” to my chart. I cried all the way home. When I told a close friend, she responded with great confidence that fibromyalgia was just a diagnosis when the doctor didn’t know what else to do. It wasn’t real. This was the first time I remember feeling like I had to be guarded because people, even those close to me, weren’t always “on my side.” I think about her response every time I have a new conversation with someone about my health. I wear the wound in the way I enter every personal exchange: with a certain defensiveness, assuming the other is going to question or doubt me or my diagnosis. It’s not fair, or even necessary, but it’s unavoidable.

After my first sort-of diagnosis, I decided I would just be in pain and learn to deal with it. At the time, I attended the University of Colorado in Boulder. I started skipping morning classes because I couldn’t make myself get out of bed. I thought about talking to the disability office, but I didn’t know what to say. I didn’t know what was wrong with me and maybe a part of me thought I deserved it. After all, why couldn’t I just suck it up and get to class like everyone else?

I also suffered four unexplained stress fractures in my foot over the course of two years; a walking boot became an almost permanent accessory. Lugging around the weight of the boot added to my exhaustion. One day, a woman from Campus Crusaders asked me about my boot. I told her about my most recent fracture.

“Can I pray for you?” she asked.

“Sure,” I replied. It was a nice sentiment. What I didn’t understand was that she meant right then. She knelt and laid her hands on my injured extremity in the middle of the quad. She prayed for healing while I looked around anxiously at people watching as they passed.

Then, she stood up and asked, “How does it feel?”

“What?” I blinked.

“Your foot. Does it feel better? Did I heal it?”

I whispered, “I’m so sorry, no,” and hurried away, caught between the urge to laugh and cry.

I think about that moment often, years after my headache set in, a headache I have lived with every moment of every day, that has lasted for a decade with no relief, as doctor after doctor tries to connect the dots between my head pain and every other symptom—a single, complex puzzle where the pieces just won’t fit together no matter how hard you try. I wished, am still wishing, that my healing could have been that simple.

My headache has been my relentless companion, but that’s just part of it. All the pain and other symptoms, the many unknowns that came before my headache started, are still with me. Because I’ve never had just a headache. It’s a systemic betrayal. At this point, I am in pain literally everywhere, with almost every body system affected in some way.

I’m overwhelmed when I think about all the things that are working just in the second it takes me to take a deep breath without thinking about it. The body is a marvel of connected nerves and muscle, skin, and bone, all working together to give us life. We trust our bodies implicitly. We have to. Can you imagine constantly thinking about how it might just stop breathing or beating one day? That your brain might just decide to turn off? You can’t. You have to trust that it’s doing everything it’s supposed to be doing so you can go on living. That is, until you become sick or injured. What happens when the outside world has to intervene in your body’s functioning? That’s when you lose trust.

That’s when you start to realize that your body, though a marvelous, complex thing, is not infallible, that you are not infallible. You start to wonder what part will give out first. You realize, perhaps for the first time, that your time to be alive is finite. That you are going to die.

That is what it’s like to know that something is wrong deep inside of me. Is it a bomb that could detonate at any time? Maybe or maybe not. My doctors tell me there’s nothing life-threatening about any of my symptoms. My death isn’t imminent. But I know that things aren’t working the way they should. As my neurological symptoms worsen and start to affect my movement, my ability to walk or even stand for long periods of time, “life-threatening” seems more and more nebulous. I’m always aware that I can’t trust my body implicitly any longer, living in the liminal space of what will stop working next.

I have a list of diagnoses that explain various symptoms: we’ll call it a complex autoimmune neurological inflammatory syndrome. Perhaps my body just can’t fight things off because there’s something fundamentally wrong with my immune system. Maybe my body is just attacking itself in yet to be understood ways. It’s all very chicken or egg. But I need something to hold onto. Otherwise, I might float away, give in to the pain forever.

I’ve probably made this all sound so much worse than it is. For all intents and purposes, I’m “functioning.” I get out of bed on most days (oftentimes it’s even in the morning). I try to write as often as I can. I’ve worked on and off in part-time roles that give me enough flexibility to nap or rest. I go to church and visit with friends when I’m able. I stress this because so many others with similar symptoms are bedridden, are hurting so much. I don’t believe in the economy of suffering. There’s no value in assigning values to individual experiences, whether it’s to sympathize with someone else or to minimize my own suffering. I’m trying my damnedest not to let all of this get in the way of my living. I’m trying hard to make peace with my body, this strange and complex system of pieces of parts. I’m a living miracle, even on the worst pain days.

Stephanie Harper is the author of the award winning novel Wesley Yorstead Goes Outside, as well as a poetry collection entitled Sermon Series. She received her MFA in Creative Writing from Fairfield University. She’s written personal essays and articles for many publications online and in print. She currently lives in Littleton, CO.