If my pain were an experiment: the provider coming to terms with the patient in me

by Catriona Hong //

My eyes jolt open, and I escape the nightmare that was chasing me through my dreams. My eyes opening are the last movement I make for the next five minutes. The clock reads 2:03am, and the only sounds in the room are my cat’s gentle snores at the foot of my bed, and the spinning of the ceiling fan. My surroundings are near devoid of the sensory, but my body is a battleground. I swear there are coal miners in my head, angrily swinging their pickaxes at my brain. My pulse throbs, and any movement as little as wiggling my toe triggers a tidal wave raising the intracranial pressure to absurd levels. Tears sweat passively from my eyes, my body refusing to actually cry as the action would be torture. Unable to bear it any longer, I gingerly pull myself out of bed and hobble towards my parents’ room. Walking down the stairs is out of the question. I crack the door open and slowly approach my mom, tears still leaking from my eyes. I don’t have the words to describe the pain, and feebly ask for Motrin, Advil, Tylenol, anything to make it go away.

Even at a young age, I thought of pain as something you push through, a slightly misguided perspective shaped by my sports-filled childhood. Games and practices aren’t put on hold if you don’t feel up for it – push through or miss out. During my field hockey season junior year of high school, I pushed myself to the point where I couldn’t walk normally for months. I still sometimes experience the lingering ghost of that injury. I suppose what it amounts to is the fear of pausing, and life going on without me.

I don’t think the headache and migraines began for me until late elementary school, and I remember them as acute and not chronic as they are now. While everyone has a different experience with them, I would characterize mine as a sort of painful purgatory. It is as if a veil descends and separates me from the world. Not quite dissociation, but close. My energy levels drop, and exertion of any kind leaves me drained with my head pounding. If daily life was a walk in weather varying from pleasant to inclement, a day with a migraine is a 400 meter repeating sprint in ninety degree heat with the sun beating down on the burning rubber track. Just like a particularly rough field hockey practice. It’s is physically possible, painful, and requires endurance training.

Over the last few years, as my headaches have gotten more frequent and more noticeable, I’ve caught myself falling into a “learned helplessness” mentality. It was at some point during middle school when I accepted that I would have headaches, for most days, for the rest of my life. I was young when I accepted this fact, that daily pain is a part of my existence, and because of that, I don’t usually find them to be debilitating. Headaches are a part of my day, as routine as my daily cup of coffee. I exist, for the most part, in what I believe is complete normalcy. I think the most unacceptable part of all of this is how acceptable I found, and still find, it all.

~

“Africa” by Toto blasted through the mini Bose speaker in the middle of the locker room. The entire club hockey team huddled packed into the small room, attempting to defrost a bit after the freezing winter walk over to Matthews Arena. Did anyone else feel the music was a little too loud? I blinked. Opened my eyes. I blinked again. I opened my eyes, and frantically looked from left to right without turning my head. Trying not to draw too much attention to myself, I closed my left eye, and then my right. Panicking, I grabbed my water bottle and hurried out of the room, nearly colliding with the doorframe on my way out. “Hey Trina!”, someone was waving to me from twenty feet down the hall. Who is that? Why can I only see half of her face? I turned my head to the right and looked out of the corner of my eye and saw it was Hannah – we’ve played together for the last three years. I pulled my phone out of my pocket, ready to call my mom. I looked down. I could barely see my phone. Opening the phone app and finding her contact took me almost a minute, normally it would take seconds. Her reassuring voice appeared over the line and I chant it back to myself – you’re probably having a visual aura before a migraine, take some Advil and you should be fine in thirty minutes. Forty five minutes later I skated onto the ice, vision intact, with only a bit of a headache left to remind me of the fear I just experienced.

~

My partner like to joke that I’m sickly, which I always rebut vehemently. I’ve always seen myself as strong, resilient, healthy. I suppose that aligns with my constant rejection of my head pains as an issue. But I guess he’s right. He’s seen me deflate from an energy level of ten down to a one and withdraw from social activities because the overwhelming sensory stimuli and exertion made my head pound unbearably. He’s seen me refuse to eat my favorite foods because the smell of them make me nauseous. He’s seen me wince as I step into the sunlight, and refuse to get out of bed, refuse to move. But he’s also seen me fill my every waking hour with classes, assignments, sports, work, clubs, and volunteering. He’s never seen me miss a commitment. He knows I’m capable, that I’m as healthy as every other college student out there, but he also knows there are a few times when I’m not. I imagine that holds true for most people.

~

A few months later after experiencing the scare that was my first visual aura, I find myself sitting in the dim waiting room in the Headache Center at Faulkner Hospital, shivering from the mid-January frost. The doctor comes in, walks be back to an exam room, introduces herself, and asks me about myself. I launch into how I am a college student, how I just finished working in a research lab, how studying for the MCAT is major point of stress in my life. I tell her about how both my maternal and paternal grandmothers have migraines, and so do many of my cousins. I try to demonstrate that I understand the medical process. She tells me I have migraines and chronic daily headaches. I know that. She starts telling me about all the different medication options; preventative medications, rescue medications, she pulls out a epi-pen like device and tells me injections might work, she tells me if my three day migraines don’t go away, that I can come here or go to the ER for steroid injections. My eyes widen. That seems excessive, mine are never that bad. She tells me the side effects, the benefits and drawbacks. She tell me I need to switch to an estrogen-free pill as my migraine with aura makes me a stroke risk. She signs me up for an MRI, just to be safe. I am utterly overwhelmed. Maybe I don’t need this, maybe it was a mistake. I tell her I’ll try the preventative medication with the least side effects, and whichever rescue medication she recommends.

~

As I write this, it’s been over a year since I’ve started taking preventative medication. I think I’ve had more headache free days that I did before seeing a neurologist, but I also seem to build a tolerance to the medications relatively quickly. Amitriptyline, nortriptyline, propranolol, ondansetron, eletriptan, rizatriptan, Ubrelvy. The medications are not pain medications in the way Advil is - they target certain pathways and receptors, each working by a different mechanism. The biologist in me loves the science, but the patient in me couldn’t care less how fascinating it is that some antidepressants can serve as a therapeutic agent to treat headaches. After each new medication switch, my neurologist asks me if it’s working. I tentatively say “I think so,” being careful to note any unpleasant side effects, changes in pain levels, yet unable to shake the lingering ambivalence.

I believe everything is based in comparison to a threshold. My daily pain has probably decreased by at least fifty percent. In scientific terms, there is something called significance. For something to be statistically significant, it means that there has been mathematical, calculated, real change. A fifty percent decrease, if my pain were an experiment, would be significant. But my pain isn’t an experiment, at least I don’t want it to be. When I’m asked “is it working” it is hard for me to say with authority yes, it is. My threshold has decreased and so I still notice the pain that lurks like a dark figure, waiting to be illuminated by bright light. Sometimes I wonder if my pain is real, if it is significant. The cliché “money doesn’t make you happier” holds true as a metaphor for illness as well. It is said that wealth above a certain point does not increase happiness. It is sometimes easier to notice the absence, as it is sometimes easier to notice the presence.

I want to be a doctor. But after being a patient, as well as a healthcare provider, I’ve realized that everyone is constantly readjusting their expectations, their thresholds of what is tolerable. I’ve also realized that patients and their health is often treated as an experiment. This is not necessarily a bad thing, as the outcomes can be good, but it does results in a certain type of depersonalization and detachment. While shadowing in an oncology clinic, I heard countless variations of: “if you take this chemotherapy, have this operation, enroll in this clinical trial it might increase your life span.” By how much? The patient is thinking years, the doctor is thinking months. The doctor is thinking how it will target both cancerous and healthy cells, hopefully targeting more of the cancerous ones, and tells the patient of the side effects. My best friend’s mom has cancer, she has been battling it ceaselessly, herself and her family constantly readjusting their expectations and hopes. The patient accepts the treatment. The patient may spend the next several weeks, months, years battling the side effects while losing a war to the cancer and suffering from their diminished quality of life. Or they might beat the cancer, and go into remission. There is no way to guarantee which outcome will happen. It’s an experiment, and everyone is blind to the outcome.

Recently, I’ve become more and more interested in the idea of narrative medicine – the use of storytelling as a way for the patient and provider to better understand each other. To provide better, more compassionate, more humanistic care through mutual acknowledgement. I wish my neurologist had asked me more about my story. She asked more than enough, but I had more I wanted to share. I could have shared more: how the medication I was on made me, someone who used to wake up at the crack of dawn, struggle to wake up before 10am, how I worried about my ability to carry out the long hours that will be required of me in medical school, how I was told I wouldn’t need to be on preventative medication forever, but when would I be able to stop? I wanted her to hear the resignation in my voice, but more than that, I wanted her to hear the fear and the hope I consciously try to suppress. But despite being armed with more knowledge of the healthcare field than the average patient, as the patient I did not feel I had the authority to speak on my own. Rather, I waited to be prompted, and left my appointment with so many things said, but so many more unsaid.

I watched a TED talk by Atul Gawande, one of my favorite physician writers, the other day as I sat pondering how I might integrate my English major background into a career in medicine. He was discussing how a simple surgical checklist significantly decreased mortality and surgical complication rates at all hospitals where the program had been implemented. He said it “was better than a drug,” yet surgeons and hospitals were resisting accepting and implementing this protocol despite the incredible data. Why, Gawande asks? Because implementing such a protocol, a checklist, would fundamentally challenge and question the values of independence and self-sufficiency physicians prize, and were trained to hold above all else.

I believe in the power of narrative medicine, and the healing power of expressive writing. I believe meditation and exercise improve health and quality of life, and that a person’s diet can protect against or cause disease. In my career as a physician, I plan to recommend these holistic practices as I believe they will do much good. Yet, as a patient, why do I resist implementing these own things in my life? I suppose for similar reasons as to why surgeons would resist implementing a procedure that is guaranteed to save lives.

~

A gust of crisp October air sweeps across my face as I close the window, attempting to minimize any surrounding sounds or distractions. My heartrate is unusually fast, and my palms noticeably damp. My first medical school interview was starting in a few minutes. I take a deep breath, trying to release the tension in my posture, the clenching of my jaw. It was hard not to feel like everything I did in the last four years was riding on these next few hours. All the introductory presentations pass in a blur, and before I know it, I am face-to-screen with a professor at the medical school. He asks: “what is a challenge you have faced, and how will it shape your future as a physician?” I don’t talk about my chronic headaches and migraines. I don’t talk about how I understand chronic pain, how it is to live with something I know I will never live without. I don’t talk about how I’ve finally allowed myself to become a “patient,” and how hard it was for me to give up the role of being “only” a caregiver. I don’t talk about some of my frustration with the depersonalization of medical care, and the focus on adjusting medication without considering other practices as well. Don’t show weakness, don’t let them think there is anything wrong with you. There’s not. Instead, I talk about my fear of public speaking, and how I overcame it by presenting my research at poster conferences and becoming a teaching assistant and CPR instructor. I talk about how working as an EMT and a substance abuse case manager was challenging, and pushed me to think differently about health care delivery. I tell him that from my experiences, I have learned the patient narrative is incredibly important: complex, nuanced, unique, and personal. I take a deep breath at the end and smile, feeling I told my story true to myself, and as others needed to see it. I hit the red “leave meeting” button at the bottom of the page. Exhaling, I relax back into the chair. I close my eyes and massage my temples, subconsciously rubbing away the pain that emerged, no longer subdued, shouting like a raging crowd as soon as the buzzer went off, and the time ran out.