The Pain I'd Like to Learn to Miss
For six years, I suffered from debilitating chest pain, and now I do not.
This week, the temperature dropped to 13 degrees. Under my sink, I keep a supply of pain patches. Every morning that it was below freezing, I sat up and paid attention to my chest to determine if I’d need one. I didn’t, and now the temperature is in the high 40s again. There are four large lidocaine patches and 46 smaller “thermal analgesic” patches left.
The patches were given to me in August, along with an inhaler and a two-week supply of a prescription medication intended for the treatment of COPD and severe asthma. During my appointment with the pulmonologist, he asked me to describe what my chest pain felt like. I instructed him to make a fist. I wrapped both my hands around it – he was a very tall, broad man with enormous hands. I squeezed his fist between my palms and instructed him to try and open his hand. When he did, I dug my nails into his knuckles and the meaty base of his wrist.
“It feels like that,” I told him, “but around my lungs, and constant.”
Frowning, the doctor shook his head at me. He wasn’t angry with me, but upset at the pain. “Six years is a very long time to endure that,” he said in a thick German accent.
The pulmonologist was the second of five doctors I saw that day. He towered over me in a neat vest and carried an honest-to-God pocketwatch. My friend Rebecca sat in the waiting room because I was scared. After the pulmonologist, I would see a cardiologist, then an allergist, then slide onto a table in a lab for an echocardiogram. Even though it turned out nothing was wrong with my heart, as I sat with the German doctor’s gigantic fist between my fingers, I thought of how big my heart was supposed to be and whether I would need to fix it.
Don’t worry. My heart was fine, and I’m alive. I’ll write my way to the happy ending, I promise.
For six years I suffered from constant, chronic, debilitating chest pain. Most people didn’t know. Those who did know didn’t realize the extent. Weeks after I got my medications, I was on Facetime with my friend Chloe.
“Look what I can do now,” I said excitedly. Stretching out on the sofa, I propped myself up on my elbow and put my body’s full weight on my left side. Chloe looked at me expectantly. “See?” I said again, tilting the camera to give her a full view of myself.
She didn’t understand so I explained. “I can lie on my left side now,” I told her. “I can lie on the couch if I want to watch TV.” Her face flickered with conflicting emotions. I could tell Chloe didn’t know how to feel for me – happy or horrified.
“I guess I didn’t realize that’s something you couldn’t do before,” she said gently.
For six years, I could not stretch out to watch TV on the couch if it meant putting weight on my left side. I couldn’t carry a purse on my left shoulder for more than a few minutes. I could not be little spoon if I was on the left side of the bed. Certain bras were out, and most shapewear too. During my period, cramps and bloating in my abdomen would put extra pressure on my ribcage, exacerbating the pain and making it hard to breathe. These rules were imposed upon me by my own body. I navigated them without saying much about it.
I remember a day in early January 2018, two years into my chronic pain. I had just moved into a new apartment and did not yet have a bed, so for a few days I slept on the floor atop a thick pile of comforters. One morning I woke up and I felt shooting pain every time I moved. A combination of the cold and pressure from the hard floor had me gasping for breath when I tried to use my left arm. I called into work. I dragged myself upright to feed the cat, and when I came back to my makeshift bedroll, I piled pillows and sweaters into a body-length cushion to cradle my ribs and relieve some of the pressure. I slept the rest of the day.
It wasn’t this severe all the time. But it was always at least a little like this.
In that six-year period, I brought my chest pain up to every doctor I saw. They all told me costochondritis, the swelling I had experienced, was very normal after pneumonia, and that ibuprofen should solve it. One said the Advil liquigels were probably my best bet. They all assured me that, eventually, it would just disappear on its own. Mentally, I labeled my chest as “The Injury” and resigned myself to living like this forever.
During the summer of 2022, my chest pain grew unseasonably severe. So did the swelling. In bed one night, I looked down at my chest. My clavicle was uneven. If you placed a marble on my left shoulder, it could roll cleanly down to the right one due to the slope of my swollen chest. Doctors had told me time would make it better, but it was getting worse. I made another appointment.
As I explained my medical history to my new primary care physician, two lines deepened between her eyebrows.
“Did you say this started in 2016?” she asked, concern evident in her tone. I said yes, and I told her that I had already been assured my condition was typical. Still, I wanted to pursue any relief I could.
My doctor said actually, this was not typical. Something was wrong with my lungs or with my heart. A series of function tests, along with some x-rays and sonograms, would help us determine what was wrong. Her biggest concern was that when I had the chest infection that had left me with pneumonia, bacteria had also spread to the lining of my heart. If that was the case, she said, the pain in my chest was likely due to scar tissue that was now impeding my cardiac function. She scheduled a full week of tests to determine what was wrong, once and for all.
On the train ride home, I sat with one hand against my throat, feeling my own pulse for reassurance.
Sometimes, my pain felt more like shame. It was a dirty secret I was keeping. How was I supposed to bring any of this up in conversation? It’s been a couple of months since I last saw you, things are going well except for the constant throbbing ache that takes up half my torso, I have been so busy at work but got really into collage. I wrote about it only briefly – I mentioned it in another essay, and I wrote one poem about it. The pain escapes my writing. My anguish is not a metaphor for something else. The pain is only pain.
The longer it sat within me, the more reluctant I was to acknowledge it in mixed company. Many people offered well-meaning suggestions that didn’t work, and the fact that they didn’t work made me feel stupid. Over time, I began to believe that I didn’t deserve relief – I had contributed to the circumstances that left me scarred, so I could not expect to ever get better. I kept taking ibuprofen and Advil, grimacing through sex and karaoke, and hoping I would someday be punished enough.
At my meeting with the pulmonologist, I let go of his fist while we went over the results of my lung function test. It was clear that my lung capacity was diminished and I had almost no stamina. He turned the computer monitor 45 degrees so I could see the meaningless lines swooping all over my graph.
I had struggled through the lung function test. A pretty, impatient nurse emphasized to me, again and again, that I really needed to try, that they couldn’t get good data if I didn’t exhale for a long enough amount of time.
“I’m trying as hard as I can,” I swore, gasping for breath. My eyes brimmed with tears, from the pain and shame that blurred so seamlessly. “I promise, I’m taking this seriously. But I just can’t breathe that long.”
Apparently, the pulmonologist could see this on the chart. “Your breathing only got weaker over time,” he said. “The more you had to breathe in and out, the weaker your performance.” The way he said this did not hurt my feelings. He looked over his notes again, confused, and asked me again, “When is it hardest for you to breathe?”
When I lie down, when I’ve gone up stairs, when I run, when I dance, when it’s cold, when I wear tight clothes, when I try to –
“When it’s cold?” he asked me. “What about when it’s hot?”
I explained that my chest pain was most severe in cold weather, but this summer, for some reason, it had been pretty bad. Maybe from being in and out of air conditioning?
He typed some notes into the computer, consulted a print-out with my previous tests, compared two note cards that my primary care physician had handed him, then announced, triumphantly, “You have asthma!”
Because I did not have asthma as a child, because I have no environmental allergies (pet dander, pollen), because my symptoms are “cold-reactive” instead of triggered by more commonplace hot conditions, I had asthma for six years before I received a diagnosis. My other doctors all got it wrong. I got it wrong, too. I thought that my chest was swelling, and the swollen tissue was constricting my breathing. Actually, for six years, I was having regular asthma attacks. They, in turn, exacerbated my costochondritis, the painful swelling that left tissue spilling out between my ribs.
I was flabbergasted. The pulmonologist was thrilled. He stood and went to a cabinet, rummaged around, and pulled out a small box.
“This is very, very expensive medication,” he said, opening the box. “But we have samples.”
He handed me the instructions. “It has a blister pack inside that activates when you slide it open, so don’t lift the cover until you’re ready to take a dose. It’s a powder. You have to hold it to your mouth and suck it in, then hold it for ten seconds before you exhale or swallow. Go on,” he said, handing me the little device.
I put my mouth to the plastic mouthpiece, sucked in, tasted bitter powder on my tongue for ten seconds before I swallowed and closed the lid.
“How much does it cost?” I asked the pulmonologist, who was rapidly typing instructions into the computer.
“That sample is two weeks’ supply. Fourteen days,” he said. “I will prescribe you an inhaler, which you should do twice a day for the next two weeks, then once a day for the two weeks after that. Then it will just be as needed. And I will have the pharmacy deliver some pain patches, too, good lidocaine ones, so you don’t need to use so much ibuprofen.”
“What do I do when I run out of the sample?” I asked him. I was struggling to catch up.
“You should see improvement in two or three days,” he said to me. “If you still have pain after two weeks, we can get you more, but that should give you a chance for the swelling to heal. In two weeks, you will be better.”
I looked at the tiny piece of plastic in my hands. “Two weeks?” I asked him. “Only two weeks?”
“Six years is a very long time to be in that much pain,” he said back to me.
“I know,” I said, and I started to cry.
The pulmonologist visibly startled and then he stood, bustling out into the hallway. “I need a glass of water,” he said to the administrator, his thick accent not quite masking the theatricality of his tone. “That medication is so bitter, I need water right away or my patient is going to kill me!”
He stayed out of the room long enough for me to collect myself and wipe my tears. He busied himself with paperwork while I drank water and took deep breaths. When he turned back to me, he pushed the instructions for my medication sample across the desk, along with a printed packet with information on my prescriptions.
“By one month from now, you should only need to use the inhaler when you’re doing a lot of physical activity,” he told me. “But if you don’t feel better you can always come back.”
I still had more tests to take, an echocardiogram to sit through, so I returned to the waiting room. Rebecca looked up at me expectantly.
I felt my eyes welling even before I said, “He helped me,” and I kept crying as she wrapped her arms around my waist. For six years, I begged doctor after doctor to help me find relief, and they told me the problem was my impatience. No one took me seriously, and then I finally got a doctor to listen. Then I spent two weeks waiting to find out if my heart was encased in a shell of scars. I went through a litany of invasive, expensive, time-consuming tests. Over more than half a decade, I spent thousands of dollars and hundreds of hours waiting for the constant pulse of my pain to reveal some reverent, glowing truth. It took one doctor to solve it all. I have fucking asthma.
On day four of using my inhaler and taking the medication, I woke up without any pain for the first time in six years. A week later, I received the results of all the tests. Nothing was wrong with my heart.
There have been a few days this winter when I’ve made good use of my inhaler. When I first got it, I was warned not to become too reliant on it. I don’t need to use it very often. Before flights, I stick on a couple of pain patches – I’ve found the changes in air pressure trigger the swelling – but I have needed them less than I worried I would this winter. When I come up the subway stairs, I no longer need to stop and collect myself to ward off swimming vision from the stabs of pain. I can’t remember the last time I canceled plans because I could not breathe.
I don’t miss the pain, but it is missing. When I’m doing a complicated household project, I take my rings off and my hands are suddenly alien. This is what it’s like for me now. Where is my pain? Did I leave it somewhere? Is it going to come back? I don’t want it to, but in its absence, I wonder. I touch the place where it used to be.
I’m more grateful than angry. Was relief behind a closed cabinet door in the dozens of doctors’ offices I visited? The curiosity does me no good, but at night, I fall into these questions.
It was hard to talk about the pain when I had the pain. It was too intimate to bring other people into the relationship I did not want to have with it. Now, I make notes to myself – reminders of what it was like – little vignettes of a person who managed to live while always hurting. It was not weakness to say Help me, please help me, again and again, even when no one listened. And it was not strength that allowed me to wake up on the wrong side of myself, screaming in agony, and sit upright when there was no other choice.
All of it was circumstance that is now a part of my past. I know I learned something from it, though I’m not sure what. When I have trouble sleeping because I get stuck on six years of what-ifs, I listen to the sound of my own breathing. The steadiness, no longer new, lulls me to sleep.