Why false stories about caregiving can be harmful

We are told different stories about what is involved in caregiving and who a caregiver is supposed to be. These tales are usually pristine and noble, dwelling on saintly sacrifice and infinite patience. Unfortunately, most of these stories are not just unrealistic but also harmful, setting a silent yet brutal standard by which we judge our own efforts.

“The Perfect Martyr” is the first harmful story we’re told about caregivers. It insists that, for someone to be good at caregiving, they must never entertain feelings of anger, resentment, guilt, or exhaustion. Caregivers often feel tired and worn out, but this story suggests that fatigue is a failure of character. That is not true. Since my mum developed myeloma, tiredness is an everyday reality for me. Every time I lose my cool and snap because a pill bottle has spilled, I am demonstrating that this narrative is a lie.

Next, there is “The Battlefield.” This story portrays illness as a war in which the caregiver is a soldier and treatment is a strategic attack. It transforms our silent suffering into a noisy conflict and places more value on fighting than accepting, making peaceful days feel like a surrender. My mum is not a battlefield; she is a human being who is struggling with a rare cancer. Our goal is to live a comfortable, high-quality life. We are not making unrealistic vacation plans or aiming for some nonexistent victory.

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“Everything Happens for a Reason” is perhaps the most destructive story of all. This narrative tries to plaster meaning over pointless suffering. It suggests that my mum is suffering from pain and discomfort because of some benevolent, grand, well-meaning plan. That idea does not comfort me; instead, it insults me, my efforts, and all the invisible labor I perform every day. This story attempts to transform an unfair, raw, and meaningless illness into a more palatable and acceptable reality.

These stories are like prisons, demanding we respond with devotion and grief in a specific way. As I unlearn many things as a caregiver, I am also learning to discard these stories. Every week, when I write about my experiences, I am telling a new, true, and authentic story. In this narrative, my love for my mum is messy, and my patience is not infinite. On many days, the most courageous thing I can do is not to fight, but to endure the challenges with my mum.

Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.