How Being a Good Patient Nearly Killed Me

I came into the hospital about four days ago at 6 am in extreme abdominal pain.

I remember writhing on the emergency room bed and breathing so frantically that my fingers and toes went numb. I remember asking the doctor to please help me, because I didn’t have the composure to ask anything more than that, and because I was desperate. I remember telling him I had never been in such severe pain before. After several rounds of morphine, my body began to relax—my brother, who accompanied me to the hospital, said the change was visible, as my hands and legs, which had been grasping and kicking into open air, fell back down to the bed. Half an hour earlier, I had been unsure about whether or not I wanted to go to the emergency room at all. I didn’t want to be dramatic if this was only a stomach cramp after all.

Once I was on pain medication I stopped the wild pleading, and waited for doctors to come back around to my bed. I got in touch with the people I needed to tell about the situation– coworkers, friends I had plans with, family members. I told my mom not to travel to see me, although I’m so thankful now that she didn’t listen. Whenever someone texted to ask how I was doing at any given moment, I gave them an update on the hospital visit and say something vague like, “Ehhhhhhhh not great haha.” I insisted that I would definitely be well enough to still get lunch the following week.

It took over 36 hours before I was diagnosed. At first, the doctors suspected gastritis, and told me to go home whenever I felt I could walk. Fortunately, I couldn’t really walk, and this kept me in the hospital. Several hours later, for unknown reasons, they decided it was actually probably a ruptured ovarian cyst. The scan meant to examine my ovaries didn’t confirm this, but incidentally revealed that something that looked off in my intestines. Further scans and a surgery found that the portion of my intestine had wrapped around a suture clip that had dislodged from a previous procedure, and was not receiving blood or oxygen. Thanks to the hospital’s team, the problem is now fixed. When I woke up, they told me that I didn’t lose any part of my intestines, and today, two days after the surgery, I am beginning to feel like myself again.

When the doctor came to my room the day after the operation, he showed me images from my surgery— the affected part of my intestines looked like a black, swollen slug, wrapped in a ball. The portion of tissue appeared dead, although it was only sick. The doctors didn’t know what to expect when they operated, but once they untangled the knot, they found there was still movement pulsing through it. The blood returned. Because I couldn’t connect to the hospital WiFi and because I was sick, I hadn’t read much about the condition beforehand. I didn’t realize when I went into surgery that, while it was more likely that I would survive, there was also a significant chance that I would not, and that this chance had been growing every hour that I was not diagnosed. 

It’s not hard to imagine a different universe, say, one where I arrived at the emergency room 30 minutes earlier, where I might still have had the capacity to walk when the doctor initially tried to send me home with gastritis. I might have trusted the doctor who told me it was safe to leave. I might have felt satisfied with the dull comfort of morphine. I might have told myself to push past the pain while the tissue in my gut grew infected or damaged to a point beyond repair, to a point where the odds of surviving were tilted out of my favor.

In the day following the surgery, the doctor told me multiple times, “You must have an extremely high pain threshold. We would expect someone with this condition to be screaming out in pain.”

When I said I was starting to feel alright, my nurse shook her head and said, “Well, we know you’re not a complainer.”

The thing that struck me is that I was in extreme pain. I was writhing and moaning and begging for painkillers when I came in. I didn’t know any further way to express my state than the way I already was trying. I wasn’t even speaking in sentences at first, although once I was on morphine, I quieted down and slept a little.

I remembered when I had appendicitis the year before, how the doctor had suggested that I was experiencing a stomachache. He said he would do the scan “just in case.” He told me he would feel really bad if I came in the next day with a ruptured appendix.

I remembered how, in my gut, I knew that he was reading the situation wrong. I knew that I’d had stomachaches before, that I knew what they felt like, and I knew that this was different. I remember even wanting the scan to show appendicitis, because at least it would mean that I could be trusted, that my perception of pain was accurate, that I hadn’t come to the emergency room with cramps or a passing bug.

I’ve been primed to feel some quiet outrage in this type of situation.

When my mother was a young teenager, she spent 6 months in severe pain and almost lost her life to an infection that was entirely treatable, but went misdiagnosed for far too long. After she was finally correctly diagnosed, the doctor, whose job it was to recognize her symptoms, insinuated the situation was her fault, because she hadn’t complained enough. He told her she must have a pain tolerance that was too high, and that he hadn’t seen her express “extreme pain,” one of the qualifying symptoms of the condition. I grew up hearing this story as a cautionary tale, and the phrase “high pain tolerance” has, consequently, always carried a certain threat.

While I was speaking to my mother after my most recent medical experience, she pointed out that this had been a pattern throughout my life. In my early adulthood, I was also diagnosed with Ehlers-Danlos syndrome, a genetic connective tissue disorder. While EDS affects quality-of-life, and in some cases can cause fatal complications, patients have a hard time receiving a diagnosis. Many of the symptoms are invisible, and others are waved off as benign. As child and teenager, I would experience some type of pain, and nobody would think much of it, until some test or scan came back validating my complaints. My mother talked about watching me struggle to be believed, and how guilty she felt when a different set of images verifying an EDS co-morbidity came back years ago, and the pain that everyone thought I was too young to actually have had shown up in graphic evidence.

I understand that in the wide world of medical diagnoses, it can be hard to pinpoint quickly what exactly has gone wrong. I can’t ask doctors to be more than human. I am beginning to recover, and my mother is now in good health as well. I am so grateful for both of these things, and for all the doctors, nurses, hospital staff, and researchers who made this possible. I’m not writing this to dismiss their work, although, I do think we could all benefit by taking a moment to reflect on how we recognize pain in ourselves and in others. Instead, I want to share this to encourage other people in crisis to demand the help they need, to challenge the myth of a “good patient” that might exist within all of us to varying degrees.

I want to offer another narrative to people who have been told directly or indirectly that if they talk too much about their overlooked pain, they will be seen as weak or difficult. Pain operates on nobody’s schedule, and yet so many people live with the shame and fear that asking for the treatment they require will inconvenience somebody else. It is a valiant act to advocate for yourself and to fight for your own life. I admire the people who can speak more openly than myself, who could write this without anonymity.

I’m grateful, but I’m also scared.

I’m scared because in situations where my mother and I were nearly dying, we couldn’t express our pain in a way that a doctor could hear, in a way that could quickly secure the diagnoses we needed to live. We couldn’t make ourselves heard, even when we were trying with everything we had. I’m scared that, without some active change, we won’t be as lucky next time. There are many people who haven’t been as lucky.

Somehow, when I was told I had a high pain tolerance, I felt a type of pride. We live in a culture that celebrates toughness, and I felt strong for having seemed at least relatively outwardly composed under dire circumstances. But that’s not really what I want. My intestines were being strangled. My particular type of intestinal obstruction is rare, especially in someone my age, and so I understand why it wasn’t the immediate scenario they jumped to— but I needed some mode of communication to tell the hospital that the situation was serious and urgent, that it needed to be addressed right away for my best chances of survival.

I’ve heard so many iterations of this story from other people. Many patients have a hard time having their pain taken seriously. Many studies have supported that when factors including conscious or unconscious racial or gender bias are added to the equation, it gets even harder, through no fault of the patients themselves. It’s a complex subject, and I won’t pretend to have the authority to trace this widespread problem plaguing the medical field back to a single root cause or offer an easy solution. Even within my own story, the factors at play are complicated. There were some elements within my power, and many that were not.

However, I will say this: while there’s a strange compliment in being told that you have a high pain tolerance, that you didn’t complain, that you were a good patient, there’s another side to it. We don’t want doctors to think our pain is any less than it is or to treat it with any less urgency than it needs. Not everyone will express pain the same way– some people will scream and claw out, others will retreat back into their body. But pain, generally speaking, isn’t a gripe to be stifled, to be politely squashed out of view– it feels loud and obnoxious within us because it’s supposed to. When our bodies are asking us to ask for help, that’s a message to respect. That’s a message that needs to be spoken, if not screamed, and then to be heard, believed, and acted upon if we want to survive.

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