By Suzy
One of the least visible parts of being a patient is the work that happens quietly and often without recognition. It is only one part of the labour patients carry, but it is an important one. This work includes noticing what is not being said, understanding which questions need to be asked, and advocating for conversations that are not always offered unless a patient knows to ask for them.
In my own experience with breast cancer, this unspoken work showed up early. I did not recognize these gaps in hindsight. I noticed them in real time. There were moments when essential information was absent from the conversation, and I was aware of that absence as it was happening. Recognizing those gaps meant stepping forward and naming them myself, even while navigating the shock and weight of a life-altering diagnosis.
One of the clearest examples of this unspoken work emerged during the period between learning I had invasive ductal carcinoma and waiting for biopsy results to confirm the specific subtype. In that space, the possibility of triple negative breast cancer (TNBC) carried particular weight. I was aware that TNBC is one of the more aggressive and treatment-resistant forms of breast cancer, and I understood that the subtype would meaningfully shape both urgency and treatment decisions.
What stood out during this waiting period was not a lack of care, but a noticeable absence of language. While other breast cancer subtypes were openly named and discussed, TNBC seemed to sit outside the conversation. It was referenced indirectly, framed as something we hoped would not be the case, rather than spoken about clearly. When I asked what it would mean if it were triple negative, the conversation often grew quiet. At the same time, I was repeatedly directed to the standard Alberta Health Services booklet provided to patients at diagnosis. When I read it, I noticed that TNBC was not included.
This silence did not reduce fear. It intensified it. When something serious cannot be named out loud or found in written materials, it takes on greater weight. Fear becomes something patients are left to carry alone, without context or language to hold it. Understanding what TNBC meant for my care became work I had to take on myself. Not because providers were unwilling to engage, but because the information was not consistently placed in front of me in a clear and direct way. When my diagnosis was ultimately confirmed as TNBC, I felt a measure of steadiness in having already named the possibility. Without that preparation, the news would have felt more destabilizing.
A similar pattern emerged when surgical options were discussed. From the outset, reconstruction was treated as the assumed path, and conversations focused on what type of reconstruction might follow a bilateral (double) mastectomy. Other options were not named in the same way. The possibility of choosing an aesthetic flat closure was not introduced as part of the standard discussion.
As with TNBC, this absence was not neutral. When a choice is not spoken out loud, it becomes difficult for patients to know whether it exists, whether it is legitimate, or whether it will be supported. I had to raise the option myself and advocate for a conversation that had not initially been offered. When I reviewed the Alberta Health Services materials provided to patients, I noticed that bilateral mastectomy and aesthetic flat closure were not clearly represented there either.
For me, choosing an aesthetic flat closure was not primarily a matter of personal preference or values. It was a health decision made within the context of an aggressive cancer and an intensive treatment course. Reducing additional surgeries and aligning my surgical care with my overall medical reality mattered. Yet once again, naming that option, explaining it, and ensuring it was taken seriously became part of the unspoken work I had to carry as a patient.
What made this experience particularly complex was the source of the knowledge that allowed me to advocate. I knew to ask these questions because other women had shared their stories with me. I had close friends with a BRCA1 gene mutation, one who had navigated breast cancer and another who had chosen prophylactic surgery. Their openness gave me a frame of reference before I ever entered a clinical setting. I hold deep gratitude for those women, because their willingness to speak honestly helped me recognize when something essential was missing and when I needed to push for answers.
At the same time, my experience raised a difficult and important question. What happens to patients who do not have access to this kind of informal knowledge? When critical information depends on personal networks rather than being routinely shared, the burden of advocacy falls unevenly. Not every patient has the same background, support system, language, or capacity to recognize what is missing. In those situations, the consequences of silence are not abstract. They shape decisions, outcomes, and long-term wellbeing.
This is where the unspoken work of being a patient becomes an issue of equity. When patients are required to lead conversations that should already be standard, care begins to depend on who knows what, rather than on what is consistently offered. Self-advocacy can be empowering, but it can also be exhausting. It asks patients to carry responsibility at a moment when many are already overwhelmed, frightened, or physically unwell.
The unspoken work of being a patient is not evenly distributed. It depends on what information is named, what is left unsaid, and how much capacity a person has at the moment they need to make decisions. When critical realities and legitimate options are avoided or omitted, patients are left to carry fear, uncertainty, and advocacy on their own.
Making this work visible is not about asking patients to do more. It is about building systems where fewer patients have to. When difficult realities are named clearly, information is shared proactively, and choices are presented without avoidance, care becomes less dependent on who already knows what to ask. That shift matters for fairness, for dignity, and for the people who come next.
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