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Having a chronic illness can feel like a full-time job. We spend hours arranging for and attending doctor’s appointments, medical tests, and treatments. We expend effort on the telephone with insurance companies, hospital billing departments and pharmacies. We implement important lifestyle changes, including shopping for and preparing healthy foods, exercising, and using body/mind modalities. A lot of work is required to keep our bodies operating - work that takes time and energy. A component of this work that typically goes unrecognized is the cognitive dimension, or the thinking work we do when we live with chronic illness.
Defining Cognitive Labor
Cognitive labor “is best understood as a sequence of anticipation, identification, decision-making, and monitoring (Daminger, 2019, p. 618).” Let’s break these steps down and identify how they show up in our management of chronic illness.
Anticipation is the recognition of an upcoming need, potential problem, or opportunity (Daminger, 2019). When we recognize that a prescription is running low, or that we are experiencing an increase in disease symptoms, or that a study has just been published on our illness, we are engaged in the anticipation phase of cognitive labor.
Identification involves generating options for meeting the need or taking advantage of the opportunity (Daminger, 2019). When we experience heightened symptoms, for example, we think about options we may take. We could call our doctor, undertake home treatment such as rest, diet and over-the-counter medications, or do nothing. We may engage with other people as we generate options, asking friends, family members, and experts for advice.
Decision work consists of determining which option to pursue (Daminger, 2019). We weigh past experiences, advice from others, and costs and benefits of each option as we make our decision.
Monitoring involves following up to evaluate how well our decision met our need (Daminger, 2019). If we decided to wait and see whether our symptoms improved with rest and diet, for example, we will check in with ourselves to ascertain whether we are feeling better or worse.
The Emotional Toll of Cognitive Labor
Daminger notes that the abstract nature of cognitive labor - its resistance to spatial and temporal boundaries - “prevents the laborer from experiencing the satisfaction of accomplishment that follows the completion of many physical tasks. With no real beginning or end, cognitive work can feel like a conveyer belt without an off button (Daminger, 2019).”
Cognitive work is also invisible (Daminger, 2019). As our family members, friends and colleagues interact with us, they are not aware that our minds are unceasingly anticipating, identifying, deciding and monitoring various aspects of our chronic illness. They may wonder why we seem tired and preoccupied. In fact, our cognitive labor may be invisible even to ourselves. We know we're exhausted; we know we're preoccupied. But we don't connect it to the intense cognitive labor associated with our chronic illness.
Working Smarter for Better Health
Cognitive work is real work. When we’re anticipating, identifying, deciding, and monitoring, we are expending energy. To step off the “conveyor belt without an off button,” we first have to be able to notice when we are on it.
Next, we need to become adept at stepping off. Are there times in your life when you feel carefree, when you are able to shut off your thoughts and simply be? Some people may experience this state of being when they are engaged in physical activity or artistic pursuit. Others may experience it in nature or when they are meditating.
Notice the difference between being engaged in cognitive labor and not. Notice how important cognitive labor is: You are taking in and synthesizing information allowing you to make decisions about your health in an optimal way. Notice, also, the importance of those experiences when you are NOT engaged in cognitive labor: You are relaxed, enjoying pleasant feelings, filling up your energy gas tank.
Practice moving between engaging with and disengaging from illness-related cognitive labor. Develop a system that enables to you manage this work efficiently. Specifically, schedule a block of time into your day dedicated to illness management. You might set aside time each morning to check in with yourself, asking, “How am I feeling? What do I need today to optimize my health? What are the action items involving my health that I need to attend to?” Plug action items into your calendar so that you can get them out of your brain and onto the page.
Additionally, share your experiences of illness-related cognitive labor, letting important people know that managing your illness requires time and energy. Feeling understood and appreciated by those around you will enable you to feel more connected and less alone.
As you and the people in your life begin appreciating the magnitude of illness-related work, act to delegate and outsource. Perhaps a family member can take on designated aspects of your illness-related cognitive labor, such as managing prescriptions or health insurance matters. Download Apps from your hospital and insurance company that track interactions and enable you to see at a glance what has been completed and what needs to be scheduled. Use your phone’s voice memo function or an old-fashioned notebook to serve as the repository for cognitive work that arises during the day. When you think of something that needs to be done, record it or write it down so that you can review it during your next scheduled health check-in time.
In addition to creating designated times for cognitive labor, be sure to set aside scheduled times to rejuvenate. Get serious about blocking off time to fill your energy gas tank. This is not "doing nothing". Rather, it's giving your mind and body the positive attention they require.
I want to be clear that this management of cognitive labor works best during periods of relative health stability. During times of crisis, heightened attention necessarily is focused on health management. When we are out of crisis mode, though, managing cognitive labor efficiently can be a tool that reduces stress and fatigue and thereby helps keep us out of crisis.
How do you manage the cognitive labor of chronic illness? Please share in the comments section below.
References
Daminger, A. (2019). The cognitive dimension of household labor. American Sociological Review, 84(4), 609-633.
