Call Me By Your Name: The Importance of Advocacy

On Monday night, I found myself keeled over trying to make my way home from a shoot. My lower belly was under so much pressure that I couldn’t stand straight. I waddled to the streetcar stop hanging on to the brick walls of the building beside me as the fuzz from my mittens clung onto the bricks as I passed each and every one. I hopped on four blocks from my house a distance I would usually walk but the ten-minute journey would have likely taken close to an hour in my condition as I would be obligated to stop at every park bench on the way.

When I arrived home, I tried everything the Web could suggest to help the pain: Ice, heat, warm almond milk, ginger, turmeric, parsley…. But as the cause and origin were unknown, there wasn’t much I could do to resolve the issue. I had been experiencing abdominal pain for quite some time and had yet to find a diagnosis, but I had never been in a pain crisis quite so severe.

I stood in front of the mirror and noticed my lower abdomen looked as if it had been inflated like a balloon. I was comparable to a woman that was six months pregnant after attending all-you-can-eat sushi. As the pain persisted and going on a third sleepless night, I finally decided to visit the emergency room.

Let’s get one thing straight: I don’t visit the emergency for petty conditions. I believe that the emergency is intended for severe injuries, potentially critical conditions or anything beyond the level of tolerance. I being the latter, unable to withstand the pressure and pain chose to enter the ER early morning on Thursday. I recorded my experience:

Toronto General Hospital

7.51AM – After getting very lost in the hospital basement, I’m finally sitting in the emergency room. I check in and am awaiting triage. I’m the only one currently in the waiting room, but I know this is always deceiving. I’m certain that beyond the triage doors, the beds and rooms are at full occupancy as usual by the appearance of the staff. I’m not sure if I’m entering at the end of a long shift, or amidst the confusion of starting off the day, but the atmosphere is more tense than usual.

8.31AM – I’m always impressed with the speed of the General Hospital. I have passed through triage, where I explained the severity of my pain. I explained that my head was spinning and I was quite nauseated – though I was suspicious that this last part was caused by the lack of sleep – and added that there was a strange tingling around my face and back of my head. I told her about my condition and concern with previous neurological and digestive issues and read off my list of meds. Ten minutes later, I’m back in a waiting area with my paper bracelet.

9.01AM – A gentleman called my name and escorted me to a bed – as I suspected the area is full. They have me placed in a hallway in an overflow bed beside a redheaded sickly looking boy being fed applesauce by a nurse. She is trying to give him his meds while she explains that paramedics will be here shortly to transfer him.

9.21AM – A nurse passed to take my blood (interesting that I haven’t even spoken to anyone about my issues other than the triage nurse) and stated that I would see a doctor within the hour. I suspect that the blood is something routine, or perhaps something more specific to patients with an autoimmune disease so I ask him how often he sees Lupus patients: “All the time” he said. Apparently, people come in with failing organs without any indication of why it’s happening. Some had no prior medical history and took forever to diagnose. At least I’m working with staff familiar with the disease!

10.34AM – Apparently my blood work is normal, the doctor doesn’t think I’m dying, and told me to come back when I am in critical condition. He dropped the report on my bed and walked away without giving me the opportunity to ask questions.

Shocked, I left the emergency room holding the wall for balance and hunched over with pain (apparently I looked so bad that another hospital staff offered to escort me to wherever I was going in a wheelchair). I made my way to the entrance hall and sat on a couch to take a moment to process what just happened.

I pulled the report the doctor composed and through the messy font, under the section describing my condition simply indicated the statement: “unwell”. There was no mention of my abdominal pain or neurological symptoms. As I sat crying, I realized that the doctor discharged me without asking me about my symptoms or even touching me at all.

Is that not the simplest part of diagnostics?

I’m beginning to think that “unwell” referred to a mental state as opposed to a physical one. Of course, my only evidence of this is the fact that I was not actually evaluated by a doctor, and perhaps it is simply my insomnia speaking but the more I’m reading over my notes, the more I realize that my visit was absurd. I was treated like a child trying to get out of a test by claiming that they weren’t feeling well.

I had to call in sick to work for the week as now I wasn’t only disabled but overwhelmed with disappointment. How was the doctor able to claim that I was not critical if he had not run any tests? How could he know there was nothing truly wrong with me by looking at me?

My abdominal is still swollen, and after calling my GP received another blood test and an ultrasound. While in town, I also received my IV medication for Lupus, where I spent the majority of my infusion awkwardly stationed in my armchair, half asleep. I asked the nurse to run an extra bag of saline as I was feeling extremely dehydrated. I’ve been unable to properly eat and drink for the past few days due to the pain. I’d often find myself quite nauseated after one or two bites. The rest of the day seemed eerie. I don’t remember making my way home, but I guess my exhaustion finally kicked in and I slept for nearly 15 hours. When I woke up the dizziness was mostly gone, but my abdomen still raw.

I got a phone call from my doctor that day: While the ultrasound was normal, my blood test showed that my system was not absorbing vitamins. (Interesting that this was not brought up at the hospital if they had run even the simplest of blood tests.) I visited my doctor office to receive them as an intramuscular injection for it to bypass the digestive track altogether. She stated that it was possible that the inflammation in my belly was the cause for my absorption issues, but that there was nothing we could do to determine if the cause was lupus until everything else was ruled out and this process of elimination takes time. Unfortunately, I might be stuck trying to tolerate this for some time longer. The positive element is that after my first B12 injection, the tingling and neurological symptoms seemed to vanish.

I’ve found my tricks that can help distract and dissolve the intensity of the pain, but my mother is coming for a short visit to Toronto to help with some mundane tasks that I have been unable to perform and perhaps advocate for me on my next hospital visit.

When experiencing significant pain, it can be quite challenging to advocate for myself due to my obvious distracted nature. Whether it was lack of persistence or simply the nature of my visit, the doctor didn’t advocate for me when I was in desperate need. This is something I actually commonly experience, and while I don’t like to put a negative light on all hospitals, as some doctors have saved my life, it is due to these unfortunate circumstances that patients can fall into dire emotional situations in addition to their physical disabilities.

I can only continue to insist how meaningful it is to have someone advocate for you, or have someone of sounds mind and body to help you advocate for yourself.