I woke up at the crack of dawn in Tangier to see the sunrise. To my dismay, the glimmer of morning light that I had selfishly hoped for was blanketed with heavy clouds. I wasn’t going to waste my lack of sleep, so I gazed out onto the fuzzy landmass that is Spain as the wind cupped my ears. My excruciating headache, increasing in intensity by the half-hour, did not stick in my consciousness and seemed undeserving of my concern. If only I had known that in three short-days, I would be plagued with an unwavering 40-degree fever and incapacitated by sharp pains throughout my body.
The day my childhood best friend and I left Morocco via two trains and an airplane ride, I knew something was wrong. My headache had worsened to an unbearable level. I was unable to open my eyes, and was sweating through each shirt I changed into within minutes. Being someone who often gets sick whist travelling, I assumed this episode to be symptomatic of a short-term tropical illness. I looked forward to the running water and clean bed back home that I assumed would soothe my misery.
I woke up the morning after my arrival back in Montreal with my eyes swollen shut, and a steadily mounting fever. I called the non-emergency nurses’ line, who advised I call an ambulance based on the severity of my symptoms. I lied and said I would follow her advice, promptly hanging up the phone and making an appointment with a walk-in doctor. I refused to accept that my situation might be serious enough to warrant a 911 call.
Upon examination by a very kind doctor, who was working his first day on the job, he nervously recommended a trip to the ER. My friend and I joked with him, still laughing with my 41-degree fever. I felt as if I was going to faint when I was in the Uber. I wished my fever would go down so people would stop worrying about me and I could just go home and revel in the wonderful trip I had just returned from.
The kindness and concern from healthcare providers came to an abrupt halt the moment I entered the emergency room at the McGill University Health Centre. I was triaged, given a mask, and directed to the isolation room, where I waited for a brief nine hours. The doctor I saw, a middle-aged man who seemed irritated with my tears, promptly diagnosed me with Pneumonia after a chest X-Ray. I left perplexed, confused about how my symptoms could possibly be explained by a chest infection.
I religiously followed his directives, taking my antibiotics every few hours and drinking copious amounts of fluids. By the second day, my fever could not be brought down by Tylenol, and my entire body was in so much pain that I became immobile. I watched my best friend get ready for our convocation while I sobbed in fever-induced delusion at the loss of a milestone that I had been looking forward to all year, and as a visceral reaction to the pain I was in.
I returned to the hospital and received a rude greeting from the triage nurse: “Didn’t you follow the directions that were given to you yesterday?”, she muttered angrily under her breath as she grasped my health card. Within the first hour of waiting I sweat through my clothes, by hour four my eyes had become swollen shut, and by hour ten my pain was so intolerable that I couldn’t help but wail. I felt like a burden, an inconvenience, and an extra task for the nurses who clearly already had too much to do. By hour fifteen I was given a chair in the hallway to sleep in overnight, as the nurses deemed me too unstable to go home. I distinctly remember one nurse who changed my sweat-soaked gown twice, a standardized action that I interpreted as the peak of kindness, a beacon of light in a sea of disregard. My family flew in that day from Vancouver to see me graduate from McGill, and I spent the night awake, watching them try to fall asleep, their bodies mirroring the rigidity of the chairs upon which they sat.
In the morning, the Infectious Diseases doctor told me that I likely had Dengue fever, and that I would recover without treatment. I went home and tried my best to rest. That night, I tried to stand up to use the washroom. I promptly fainted. I dwelled on the words of the multiple doctors and nurses I had seen over the past few days: You will be fine. Are you sure you didn’t have unprotected sex? It is normal for women of your age to experiment whilst travelling. Maybe you just don’t remember what you ate. I reviewed these phrases religiously, adamantly trying to convince myself that all I had was a treatable travel-borne infection, or an STI – things that many people catch and fully recover from.
At 5 in the morning, I could not contain my discomfort, and texted my friend in the next room: “I have never felt like this before” were the only words I could come up with, and I called my family, who were staying at a hotel down the street, in a panic.
When I entered another one of the windowless emergency rooms at the MUHC, I didn’t exit it for 7 days. I ate nothing, used a bed pan, and couldn’t sit up on my own. I spent my days crying in pain and feverish sweats, wondering what could possibly be wrong with me. I endured dozens of tests After a few days, pain medication stopped working, and I had to be hooked up to oxygen. I was kept up every night by my monitor beeping next to my ear, indicating low oxygen levels. By the last day of that week, I could only breathe if I was laying exactly flat.
Because of this breathing difficulty, they sent me for a chest CT scan. These few minutes will forever be implanted in my memory. As I was laying in the machine, I could feel my airway tightening, until my breathing slowed to close to a halt. Trapped in the metal canister, I tried signalling for help, and the technician gestured to me to stay still. I started to see black spots and my vision narrowed. I thought I was going to die. When the scan was over, the technician realized the severity of the situation, and rushed me to the ICU.
A militant-like nurse immediately began bombarding me with questions that I could not answer as my hands gripped my throat in distress. I could feel every essential function of my body shutting down. She raised her voice, stating it was very important that I answer her, and that ‘I was going to be fine’. It was only thanks to my dad, a doctor himself, who connected the dots. Based on my history with Juvenile Systemic Arthritis, he conjectured that I may have a complication called HLH (Hemophagocytic Lymphohistiocytosis), an immune response where the body attacks itself. In a hurry, they decided to run with this guess and begin pumping me with steroids to counter the response. My dad’s quick thinking is why I am here to tell my story.
As I spent the next few weeks recovering in the internal medicine ward, I couldn’t help but dwell on the notion that I could have died a few days earlier. My life could have ended at age 21 because of the dismissiveness, oblivion, and ignorance of the healthcare professionals that were supposed to protect me. I didn’t have to suffer the way that I did. If the first set of nurses and doctors had taken me seriously, I wouldn’t have deteriorated like I did. I wouldn’t have felt what it was like for death to come knocking at my door.
I was treated as an unintelligent and irresponsible burden. When I came calling for help, no one trusted my story.
My healing required dozens of family and friends by my side, advocating loud and clear for my needs. I fear for those who become this ill and don’t have anyone to advocate for them. I fear that stories of medical malpractice, especially for women, are becoming a statistic. Autoimmune diseases disproportionately affect women and I can’t help but wonder how the trauma I experienced in the hospital this past June might have been lessened if I were a man. I can’t help but hope and dream for a system in which women are not handled like inconveniences.
Story by Sophie Mckenzie, Montreal, Canada, 2019