“I don’t like to think of myself as disabled, because my disability doesn’t define me. I am so much more than all of the things that I can’t do.”– Jane Silver, Mom. 

I wanted to preface this article by saying that I acknowledge that as a cisgender, straight, White female I am sure that I have had an unfair advantage when dealing with a broken system. I believe everyone should be treated equally and with respect, especially when it comes to issues of health and personal safety. 

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I never thought that after 28 years of perfect vision I would be asking waiters to read the menu to me because I could not see it clearly. The vision loss I experienced in August 2021 had been sudden and, for several months, completely unexplained. 

So how did I end up here? Well, to answer that question, I’ll have to take you back to my childhood. As a young child, I sometimes coughed and often had ear aches, but otherwise, I was healthy and happy. When I was 12, I suddenly had sharp chest pains and trouble breathing when exercising. I was also coughing up yellow mucus almost daily. This illness isn’t sexy or pleasant to think about. Imagine actually dealing with it and constantly feeling gross about it for many years.

This all happened so suddenly and my parents didn’t know what was wrong. Thus began the quest to find out what was happening to my body. This nine-year-long epic was filled with many, many doctors, misdiagnoses, and two surgeries. With every year that passed, my symptoms got more painful and more negatively impacted my ability to have a normal teenage life. 

From ages 12 to 21, I saw many doctors, but no one could ever find a lasting solution or a correct diagnosis. I frequently heard “it’s most likely X disease” so “maybe taking Y will help… Not sure what else to tell you.” This was not at all reassuring. The complete list of my possible diagnoses included: heartburn, whooping cough, chronic sinusitis, chronic post nasal drip, polyps inside my sinuses, and general excessive mucus production. I had not one, but two bilateral endoscopic nasal surgeries (believe me, I had to practice saying that many times before I could say it concisely and correctly!). 

I think we are doing a disservice to children by conditioning them to believe that doctors are always going to be knowledgeable, kind, and helpful. I understand that children are sometimes scared of doctors and medical procedures but this conditioning of blind trust and faith does not work. I was like many children in North America whose parents bought them a little plastic doctor’s kit in an attempt to familiarize, normalize, and perhaps encourage a love of doctors and medicine. I was also like many little children who played Doctor with their toys and wrapped their arms in casts made out of toilet paper and love. And while there was never any pressure to be a doctor, like all good Jewish parents, they encouraged me to give a bit of thought to the idea (doctor soon became eliminated as a career option for the future once we found out that I am fairly squeamish). Playing Doctor as a child where the doctor was someone who expressed care and concern to then dealing with insensitive pediatricians in real life was jarring. I think that when reality does not align with what a child has been encouraged to believe, it can be very shocking, scary, and saddening. 

My very first instance of a doctor being awful to me was when I saw a pediatrician at age 12. This was actually the first experience I ever had in dealing with my illness. I saw a female doctor, who was a colleague of my usual pediatrician. After describing the strange symptoms, she asked about my medical history and then said: “You’re probably just over-exaggerating! Are you dramatic? Are you doing this for attention?” Stunned and in tears, I told her that these symptoms were new and that I was, in fact, telling the full truth. I pleaded and explained how painful it was. This doctor, however, remained resistant to my pleas, and quickly brushed me off and out of the door.  So much for the Hippocratic Oath, right? Unfortunately, this horrible woman would not be the last doctor to verbally harass me by way of screaming at me, nor would she be the last doctor to accuse me of lying about my illness or exaggerating my symptoms. 

The common disbelief among doctors is something people with invisible disabilities experience far too often. If something is not visibly “wrong” with you, then it is easier for a doctor to dismiss your claims as hypochondria. 

I also think part of the fact that it took so long for doctors to correctly diagnose my illness is that I was a teen, so it was easier for a doctor to disregard the severity of what I was saying and just write me off as a whiner drama queen. 

Whether they thought I was lying or not, all the doctors I saw from ages 12 to 16 didn’t want to actually get to the bottom of my symptoms. Every trip would either result in a referral to another doctor who specialized in a similar or identical area of medicine or a prescription for antibiotics.

The antibiotics would work pretty well while I was taking them, but once I’d been off of them for a few days, the symptoms of my mysterious illness would just start right back up again. Some doctors thought it was simply severe heartburn and suggested things like not eating close to bedtime and raising my bed on a block so that my head is tilted forwards as I sleep. 

I do not remember who performed my first bilateral endoscopic nasal surgery, but my family and I were very hopeful. If the surgery was successful then maybe this would finally help me not feel such unbearable pain in my head, throat, chest, ears, back, and sinuses. What if I could participate more in school and do more activities with my friends? I was in grade 12 when all of this was happening, but fortunately, it was in the fall, so I had time before I had to focus more on applying to universities. The surgery went okay and I healed fairly quickly. Initially things were a little bit better for a few weeks, but it didn’t take long for me to revert back into the constant coughing mess of a person that I had been before the surgery. 

Somehow, and in spite of all my medical challenges, I got into all four of the universities that I had applied to. I fell in love with everything about Queen’s University, so I ended up going there for my education. Even though I had to take strong cough medicine every night in order to sleep, it was some of the happiest times in my life. Cough syrup was not prescribed to me, but no doctor had any better solution for me when it came to sleeping through the constant coughing. To this day I refuse to even look at a bottle of over-the-counter cough syrup and since age 24 I haven’t needed to use it to stop the coughing long enough to fall asleep. 

By the time I got to my 4th year of university, it got harder and harder to pretend that I was a normal college girl just like everyone else. The coughing affected my life to the point that I was having trouble keeping up in class, going out with my friends, and doing my extracurricular activities. There are many things one could call me, but a quitter is not one of them. On an average day with classes in 2012, I was hunched over as I walked due to pain, running to the bathroom in the middle of lectures to puke, and then running back to the lecture so I didn’t miss too much.

It was while I was doing my undergraduate studies in 2010 that I encountered one of the worst Ear, Nose, and Throat Specialists (ENT). I’d come into contact with many ENT specialists in my day but this doctor definitely takes the cake for meanest and most incompetent. I will call him Dr. Dismissive. I can’t use his real name for legal reasons even though I remember what it is (I would love nothing more than to expose these horribly abusive and incompetent doctors). I had waited SIX months for this appointment and was desperate for a doctor to make the pain stop. In response to my descriptions, he accused me of over-exaggerating and being hysterical and would not budge no matter how much I protested. He is a busy doctor who knows better than the young woman in front of him who is describing the daily reality of living with this mysterious illness that is eating away at her body and her sanity. So what does this all-knowing doctor do instead of his job? Why, he throws a prescription for antibiotics at me of course. It didn’t matter to him that I had objected to the fact that antibiotics were merely a band-aid solution that would only provide me temporary relief and that I wanted to get to the root cause of what was making me cough so violently. And it certainly didn’t matter to him that I was weeping and begging him to do something more than just prescribe an antibiotic yet again. 

It was not the first time I had to beg a doctor or nurse for help and it most certainly would not be my last. I appreciate that our healthcare in Canada is free, but I think it is beyond cruel and inhumane to do that to a person in need, even if you can’t physically see what is wrong with them. 

I decided that I would need proof if I had any chance of getting Dr. Dismissive to take me seriously. So I took pictures on my digital camera (because it was 2010) of all of the times I vomited up food and mucus within a week. The next time I saw Dr. Dismissive I showed him the pictures as proof. After a few pictures, he indignantly relented and I quickly asked for a referral to another ENT. 

Fortunately, his referral brought me to one of the best doctors I’ve ever had: Dr. Lee, an ENT who would eventually refer me to another amazing doctor (Hi Dr. Gupta!). Dr. Gupta would ultimately set me on the proper course to getting a correct diagnosis. Dr. Gupta took the time and extra effort to really think about what was causing all of this to happen and compared it to everything we knew so far, which was what had not worked. For example, Dr. Gupta wondered that if I had a sinus-based issue, then why was there such severe scarring in my lungs? Dr. Gupta suggested I get tested for several different illnesses, and it just so happened that the first one I tested for was cystic fibrosis. 

People often asked me if I was relieved to have my diagnosis and part of me was. I finally had a name for what was wrong with me. I finally knew what had robbed me of a normal teenage existence and had been making my body miserable. If I knew what was wrong, then maybe the cystic fibrosis clinic would have some answers and actually be able to help me. There was finally a glimmer of hope. I am, however, a worrier. So there was always the abject fear of the unknown. Was I going to die soon? What is cystic fibrosis anyways? I only knew of it because my second cousin Stacey had it. Stacey was nice, but I didn’t really ever get the chance to get to know her, because she was frequently in the hospital and she had died from a rejected lung transplant at age 25. I was 21 at the time. 

Edited by Carla Rizk