I remember the first day I fell ill. It was May 26, 2014, and I was sitting in my second period science class. I’d been having a great day — the end of the school year was coming, and I’d had a presentation that morning that had gone great. It seemed that from one minute to the next, everything changed.
I remember my teacher asking me if I was alright. She could see in my face that something was wrong.
Searching for the right diagnosis
From that moment, I never got better. I was tired all the time, out of breath from simple activity and was constantly vomiting. Over the next couple of years, I missed a lot of school, and underwent several tests. I was initially diagnosed with mono, then in 2016 with a diagnosis of cyclic vomiting syndrome. They closed the case on me, thinking that they were correct. I had been poked and prodded so much, I was so happy to finally have answers.
In the following years I tried to learn to co-exist with this diagnosis and be careful to not overexert myself, but there was still something wrong. Not all my symptoms fit with the diagnosis — and despite following my schedule for medication, I wasn’t getting any better.
In 2020, things truly took a turn for the worse. I was symptomatic more often and more severely. There were days where I truly felt like I would not make it out alive.
In August 2021, I finally went to see a physician for chronic back pain I had been experiencing. While she was evaluating me, she noticed skin lesions on my leg and became very concerned that I had not previously sought medical care.
The first test was done about a month later — two skin biopsies. This was smack in the middle of the pandemic, so I couldn’t have anyone with me in the room. At the time I was still very terrified of needles — phobia doesn’t seem like a strong enough word to describe my fear. It may not seem like a big deal, but facing those two biopsies alone was something very difficult for me.
I had had these lesions for several years but never paid any mind to them, having assumed that they were small scars from an accident I’d had. During these six weeks of waiting the lesions consumed most of my thoughts. I became slightly obsessed, desperate to figure out the cause without having to wait for the doctor to give them to me. When I did finally go in for the results, I still wasn’t allowed to have anyone accompany me in the building. Both my parents were waiting right outside, none of us sure what we should expect. The doctor was very casual in his presentation of the diagnosis to me. So much so, that I thought this was no big deal. He handed me a post-it on which he had scribbled “Mastocytosis” and told me that there were dedicated specialists in Montreal that he was referring me to.
And that was it; he sent me on my way.
I felt silly as I made my way to the elevators and down to my parents. For weeks I had been worried and trying to beat the doctors to the punch in figuring out what was going on, for all of it to be concluded in a two-minute appointment.
One Google search later, I realized I hadn’t been wrong — this wasn’t just some little thing. I read all about the different subtypes of mastocytosis and all the tests I would have to go through to identify which one I was affected by. I couldn’t believe that the doctor hadn’t given me any information at all for something so life-altering.
The months that followed were appointment-filled and exhausting. I saw dermatologists, hematologists-oncologists, immunologists and gastroenterologists. It felt like I was at the hospital every week, and only ever leaving with more questions than answers. I had to very quickly work through my fear of needles: they had become part of my normal routine. I underwent a bone marrow biopsy, a procedure that I can only assume was invented by someone who wanted to inflict pain. Then it was a waiting game again. Pieces of me had been sent off to labs, and I had to find patience.
Learning to live with the ups and downs
On March 24, 2022, I was officially diagnosed with indolent systemic mastocytosis (SM) — the “good” subtype to have, but this should probably never actually be said to someone suffering from it. Part of me let out a sigh of relief. Another part of me was a little disappointed. I had done so much reading while I was waiting on appointments that I knew this by no means was the end. I knew that even with the lifestyle changes that I would have to make, that there would always be bad days.
I wasn’t wrong. Ever since that day I’ve had both major ups and downs. I was prescribed so many medications and dosages that I lost count. There was a time during which I was having to take 27 pills per day, and I’m not convinced that anyone was weighing the benefits against how hard it was on my body. My doctors have come to a stalemate on what to do with me that could be helpful. The process is ongoing.
I am still regularly followed by specialists in hematology-oncology, immunology and dermatology. Sometimes I end back up in cardiology, neurology, gastroenterology or endocrinology offices, all depending on the symptoms that are most present. Every day has continued to be difficult, but there is one thing that has never faltered. I will continue to use my voice and advocate for myself. It’s something that I had to learn early on in this journey, and a powerful tool that I will never give up.
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