Language barriers in my cancer experience

Language barriers in my cancer experience

By Gabrielle Fecteau

PLANES (a poem written on a Friday in 2015 by Gabrielle)

They fly.
They soar.
Some even shoot for the stars.
But that isn’t the word.
I wanted to ask for a banana.
I was only hungry.

This is a short poem I wrote some time ago while sitting in a hospital lounge chair receiving my biweekly dose of chemotherapy. The letters on the page still loop from the pure exhaustion I was experiencing, a combination of being very sick and getting really drowsy off medications given to me only moments earlier.

Reading this jumble of words, I can clearly identify the thick layer of brain fog that filled my life at the time. My mind was not providing me the appropriate words to express myself as a by-product of the chemo and trauma I was experiencing.

I can also recognize in the phrases the intensity of the emotions I was feeling in that moment — frustration, anger, regret, sadness, loss, fear, and bits of love.

I was filled with emotions that day, and have many days since cancer came into my life. This has created, at times, significant language barriers in my daily life, especially when my life intersected with the medical world.

This is what I want to share with you today, the experience of language and expressing oneself when emotions come into play — which is a lot of the time when you are a young adult diagnosed with cancer.

Fluency does not mean consent

I am a proud Franco Ontarian and bilingual Canadian.

This has long been a part of my story in all of its complexities — the challenges associated to it, the gifts that were born of it, and the community with whom I share a history and a future.

Then cancer happened, as it does. It shook me at my core and propelled me into a world — the medical world — that was primarily unilingual anglophone. From doctors to healthcare professionals, to research articles and support programs, most of what I could access was offered in English.

Within my experience there are a handful of healthcare professionals who were ready and able to address me in French, my first language. Everyone spoke to me in English, and because my English is quite good, no one saw this as a barrier to me accessing adequate care.

It was especially difficult to engage with my care team and my experience in the medical world when the conversations I had to have became emotional. There are countless times when I had to solicit the help of my parents to communicate to my team how painful something was, how anxious and depressed I felt and how difficult the day to day as a 19-year-old had become. And, as I grew more anxious within the medical system, the more communication was interrupted.

I can honestly say that my care team missed some key information over the years, mostly related to my mental health, because my brain was unable to offer information in the language of choice of whomever I was talking to.

 

Language barriers in healthcare

Although I am no expert on this topic, understanding the impact that language barriers can have on one’s cancer experience has been of interest to me for many years.

As you may be aware of, there are many articles written able to support my experiences and give more detailed and universal information about language barriers in the Canadian healthcare system. I will therefore tell my own story here.

Access to care

I consider myself fortunate to have learned English as a second language from a youngish age. I know many don’t have the same opportunity. Nevertheless, I always struggled to decide what language was best for me to communicate in, if the choice was even offered.

In my case, if I selected French as my preferred language, the medical jargon was even less comprehensible to me, certain services were not offered, and others had longer wait lists. If I selected English as my preferred language, I fell short in expressing myself, relied more heavily on my caregivers, and was at times misunderstood in my experiences.

Quality of care

The language-based experiences that I shared previously, amongst others, had an impact on the quality of the care I ended up receiving as a young adult living with cancer. Although my care team was phenomenal, there are moments when the quality of the care I received was impacted by the language barriers sitting between me and a member of my care team.

For some, physical safety is compromised when healthcare services are not available in their first language. For me, my safety was most compromised when we consider my mental health.

Explaining to a health care professional the extent to which I was needing psychosocial supports was difficult in English. I fumbled on my words, struggled to form coherent thoughts, and fell quiet way before I was able to fully express my needs. As a result, the response best representing what healthcare professionals understood often felt short of what I was experiencing and needing after all.

Here is what I know to be true

Many individuals experience language barriers when accessing our healthcare system, especially in certain regions of this big, dynamic country. This “officially” includes our Indigenous communities, immigrants or descendants of immigrants, French or English speakers (depending on location), and individuals who are hearing impaired. It is imperative that we continue to understand their experiences to ensure that the best of care is provided to ALL Canadians.

What am I asking for exactly?

For a long time, I have been telling my story in the language I knew would be heard by most: English. I have written my story, told my story and shared my story countless of times, but almost always in English.

My interactions with the healthcare system quieted my mother tongue, rarely making space for that part of me and my story.

I don’t blame my healthcare team. I just know we could do better.

I ask for time. Time to ask questions. Time to think. Time to process. Time to express myself. In the time-pressured experience that is associated with the medical system, no one accounted for the time I needed to ensure my own well-being.

I ask for consideration. No one ever saw me for who I was. I didn’t even see me for me. I would have appreciated for someone to acknowledge and share the fact that communication in English was proven to be difficult when emotions are at play.

I ask for help. I never realized that I could ask for help. My pride also prevented me from doing so. And really, to ensure my safety, especially mentally, I wish someone had given me the help and normalized the offering.

Many smiles,
Gabrielle


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