Recognizing the invisible labor we perform as caregivers
A columnist sheds light on the work that often goes unseen
I have 27 browser tabs open on my laptop and 33 on my phone. They range from grocery lists with foods low in sodium to an article about a myeloma diagnosis, a study on the side effects of daratumumab, and application forms for medical insurance claims.
Although my mum’s myeloma is “stable,” my mind is on fire. What I am experiencing is the invisible labor of caregiving — the effects of the work I do that no one sees. It involves drawing up to-do lists that haunt me while I’m taking a shower and building expertise by diligently Googling at odd hours of the night.
If you’re a caregiver drowning in the unseen, I hope this week’s column can be a life raft that keeps you afloat.
The job no one prepares you for
Back when I was still working a full-time job, I took care to never miss any deadlines. I always submitted my reports well ahead of schedule — until my duties as a caregiver got in the way.
The first time I missed a deadline at work wasn’t because I was ill, stuck in traffic, or dealing with a system or network failure. It was because I had spent over four hours on hold with a chatbot from the National Health Insurance Authority.
I lied to my boss about what had happened. “A family emergency,” I had mumbled, too ashamed to say: “I was having arguments with a robot about authorizations and approvals.”
My mum’s nurses say that she is now stable. They do not see the panic in my eyes when her Kyprolis (carfilzomib) delivery is late, the sticky notes with pharmacy extensions, or the dozens of Excel tabs that I use to track her M-protein levels.
As a caregiver, I am not just looking after my ill mother; I am also doing my best to prepare for any health needs before they arise.
My friends are fond of asking me, “How is your mum doing?” But they never ask, “How are you getting on with your insurance appeal?”
Even doctors and specialists seem to overlook much of the labor we caregivers do. “Simply give her this pill three times a day,” they tell me, as if I won’t have to borrow, beg, or bankrupt myself to get the medication.
The truth is that becoming a caregiver is like taking on a second full-time job — one that has no promotions, no sick days, and no human resources division.
How to claim your worth
Considering that caregiving is essentially a full-time job, let’s look at a couple of things you can do to avoid getting lost in your ongoing labor and daily routine:
Embrace automation: Your new co-workers are not the nurses, doctors, lab scientists, or specialists, but the lab-result apps, insurance chatbots, and pill dispensers.
Track your labor: For a full week, log all the tasks you perform. Then, when you’ve tracked a full seven days, show the log to your care team and explain, “This is why I’m always exhausted.”
Delegation is necessary: Don’t think you can manage everything alone. You can’t. And it’s nothing to feel guilty about, either, especially when you’ve got a full-time job as a caregiver. For instance, I don’t hesitate to ask my friends to take care of grocery deliveries or run errands for me.
Invisible labor does not mean the work is insignificant. It means that you’re contributing so much that no one might even notice or comprehend how much you’re willing to do and how far you’re willing to go.
This week, identify a single task that you always perform for your patient that no one else knows about. When you have identified it, point at it and say, ‘This is important.”
Then, send a text or email to a fellow caregiver and ask them, “What invisible labor have you performed today?”
You might be surprised by their reply.
And what’s more, you’ll discover that none of us is alone in the dark.
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.
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