“Self advocacy”: What does it mean?

“Self advocacy”: What does it mean?

By Ashley Stead-Morine

I asked fellow YACCers if they had to advocate for their diagnosis. The response was an overwhelming, resounding “Yes!” Self advocacy means playing an active role in your cancer plan, care, and follow up. It means sticking up for yourself and your beliefs.

Where would the people who responded “yes” be months or years later had they not pushed for a diagnosis? That’s a scary thought.

My role as a self activist began the day I experienced symptoms. I woke up with blurred vision in my left eye. I was 27; this wasn’t normal.

I lived in a town north of the arctic circle called Inuvik. The nearest eye specialist was 3,065 kilometres away in Yellowknife, so I headed to the small hospital to seek advice.

Upon assessment, my eye wasn’t bleeding, it was intact, and it looked completely normal on the outside. My symptoms were dismissed as tiredness or dry eye and I was sent home.

I hoped the doctor was right as I tucked myself into bed that night. Sadly, they weren’t. I rushed back to emergency the following morning. This time, I was told my symptoms did not warrant an emergency room visit and that they’d hopefully subside soon.

I felt completely hopeless. I begged to be referred to a specialist, but without the buy in of the ordering physician, I wasn’t being flown anywhere. I called the eye specialist in Yellowknife and frantically explained my situation; I was terrified I was going blind and nobody was listening to my concerns. I exhausted all options at my local hospital.

Two days later, there was an ophthalmic technologist (I like to call him my angel) in Inuvik as part of his rounds conducting basic eye exams across the north. I was squeezed into his schedule at 7 p.m. While not qualified to make a definitive diagnosis, he was able to state that I had a mass in my eye that needed immediate attention and arranged for an appointment with the ophthalmologist in Yellowknife the next day. From there, the ball started rolling on my diagnosis. It still took three months. 

Had I not called the eye specialist myself, where would I be now? How many more emergency room visits would I have had to make? How long would the tumour have remained undiagnosed?

I don’t write this to speak ill of our medical professionals; they absolutely cannot know every ailment. Doctors literally saved my life! Heck, I’m a medical professional and I make mistakes, too.

I received word of my ocular melanoma over the phone. I jumped in my car and drove from Inuvik to Tuktoyaktuk to see the Arctic Ocean. It was calming.

Now,  I visit my ocular oncologist for scans every three months to monitor tumour size and injections to combat vision loss caused by radiation. I’m in good hands!

Through my cancer journey, I learned the importance of looking after myself by using my voice to receive the best, personalized care possible!

If something doesn’t feel right, and you’re unhappy with the advice you’ve received, please speak up, push for second opinions, push for tests and scans, push until you’re happy and feeling better. You know your body better than anyone else.


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