Flare-ups were inevitable, but when I was younger I couldn’t tell that they were happening. Even though I had been to the hospital several times for flare-ups, I didn’t know what symptoms to watch out for because my team of doctors would always reassure me I was fine. I know now that they were trying not to scare me by telling me the truth, but as a child, I would have felt empowered if I had known what was happening with my body.
On my seventh birthday I was rushed to the emergency room after my friends urged me to go to the school nurse as my face seemed oddly purple. I clasped my head in my hands and squatted down to steady my breathing while my friends silently patted my back. My vision blurred with hazy flashes of red and blue. Although I was unaware of it at the time, I had been experiencing the beginning of a myasthenic flare-up.
I had arrived at the emergency room attached to an oxygen tank and an IV. In hushed tones, doctors disagreed about how much oxygen should be administered and whether or not I should be intubated. A nurse disappeared and then reappeared with a syringe that got injected into my IV. I blacked out.
Five days later, I woke up with a tube in my throat and a lot of questions about how I arrived at this point. I was unable to audibly express any of those questions, however, as the tube to help me breathe paralyzed my vocal cord muscles. Instead, I resolved to writing the following the most, “When can I leave?” There were five whole days of my life that I couldn’t remember, and yet doctor after doctor refused to elaborate on the reality of my situation. When my pulmonologist examined my charts, he offered a feeble smile and said, “You’ll be off your breathing machine tomorrow.” The very same day my neurologist entered with equally positive claims as she promised to get rid of my feeding tube as soon as possible.
I wrote, What happened? None of my doctors had answered any of my questions, so I pestered my mom for answers. She shrugged her shoulders and propped me up on the bed, so I could sit comfortably. She looked away as her forehead creases deepened. The signs of her visible discomfort caused me to mindlessly focus my vision on the TV in front of me. As I noticed that my vision had been magically restored, I felt that everyone else except for me knew that I had been experiencing a dangerous myasthenic flare-up. Five days of my life had been stolen and yet everyone around me was telling me I’d be okay.
Needless to say, my reality was far different. I stared at the fluid slowly escaping my IV bag and entering my veins, wondering when I’d be free to leave. As new problems arose each day, I worried that I would never be released. Slowly, I began to lose hope as days turned into months and I mindlessly consumed daytime television. The more time that I spent away from my school and friends the more I felt like a shell of a person.
Upon discovering the lies my doctors told to placate me, I grew increasingly distrustful of any new information they told me. A doctor told me that I would be discharged within a matter of days, yet I saw him frown at my newest test results.
I learned to ignore their comments and soon grew accustomed to the breathing machine. I couldn’t speak, but I also knew that even if I could, none of my doctors would have been honest with me. Although I sympathized with their positions as pediatric doctors who were supposed to spin any medical catastrophe into a positive note, I couldn’t understand the lack of any real truth.
After that experience, I felt like I could never trust any of my doctors in the future to provide me with accurate information about what was happening to my body. When I was finally discharged, I was so emotionally traumatized by my doctors’ dishonesty that I couldn’t talk about my time in the hospital. A friend noted, “You were gone for so long! What happened?”
My lips remained sealed just as they had when I had a breathing tube. This time, I was able to answer but couldn’t find the words to capture how hurtful it was to have medical professionals routinely keep the truth from me. It felt like a systematic attack on my morale that my doctors neglected to offer me accurate medical knowledge.
As I grew older, I have thankfully not experienced a myasthenic flare-up. I am still, however, frustrated that the burden of explaining what was happening with my body fell on my mom instead of my doctors. Translating medical terminology in terms that a child can understand seems essential to building a trustworthy patient-doctor relationship. Even now, I dread going in for simple routine checkups as I fear my agency will be dismissed despite being an adult.
A couple of years later, I finally understood what had happened to me during this stressful time, and I felt liberated by discovering the truth. Hiding information about my own body from me and dismissing my valid concerns as a child might have seemed like the best option. But dismissing my concerns dismisses my agency. Inclusivity is equally important in sharing knowledge and managing expectations. I now feel like my doctors did me a great disservice that forever shaped the way I currently interact with medical professionals. Now, I gain accurate medical information by researching on my own, so I can finally exercise control over my body and be a proactive agent for my health.
Simmy Khetpal writes the Friday column on having myasthenia gravis. Contact her at [email protected].