- Managing health problems begins with maintaining meaningful, enjoyable activities and shedding unnecessary obligations and unproductive habits.
- We benefit by approaching tasks incrementally, avoiding self-imposed constraints, revising outdated self-concepts, and documenting our lives.
- Learning to ask for help in specific ways eases the challenges of chronic illness, even though it may conflict with our belief in autonomy.
In a previous blog post, I described how people with chronic illnesses could navigate the increasingly specialized and compartmentalized medical world. This post focuses on life away from medical settings, offering guidelines for maintaining and enhancing the quality of life at home, in the workplace, among family and friends, and with oneself.
The strategies are for people with chronic illnesses, but they may also inform caregivers, relatives, and friends. I am a former caregiver, but I write as a psychologist and a person who recently acquired a lifelong illness.
Doing What Matters
What activities give us meaning and joy? Our answers tell us what to do – and what not to do.
We should maintain those meaningful, enjoyable activities that we are capable of. In fact, some of these activities may provide even more fulfillment than before our illness. People may find meaning in continuing to work, listening to or practicing music, going on day trips with family and friends, playing board games, being outdoors, and cooking.
On the other side of meaning and joy, we can follow Thoreau’s advice to simplify, simplify–shedding unnecessary obligations, deleting items at the bottom of our to-do list, and avoiding unproductive habits that make us unhappy even during the best of times.
Listening to the Problems of Other People
Although the professional and social problems of loved ones are not life-and-death, they are still consequential. In a relationship, we should strive to give full weight to the normal daily struggles of our partner, even as we focus on our own medical challenges. When we have the stamina and cognitive focus, it’s beneficial for our well-being to provide support, wisdom, and expertise to others.
Avoiding Self-Imposed Constraints
Even with uncertainty and loss, we can do as much as we can, as long as we can. A progressive illness may eventually feel all-encompassing, but overemphasizing the advanced stages early in the disease only distracts us from activities we could be appreciating now. It’s natural to think about and plan for a diminished future, but not all the time and not with thoughts that accelerate our decline.
Drawing on Memory of Our Enduring Self
If we’re losing capabilities, we should be selective about how we revisit the past. It doesn’t help to contrast our present abilities with the abilities of a younger, healthier self. We should not focus on what we cannot do.
But it is helpful to identify what we’ve retained. We can use memory to emphasize the self that has brought us this far, the self that has been with us as long as we can remember, the self that has done good for people–and continues to do good.
Getting Through Difficult Times of the Day
The time just after waking up can be troubling. Each time we emerge from sleep, we realize our new reality is illness. And physically, it may take a while for our body to acclimate to wakefulness.
After being absorbed in a movie or a book, leaving the story may shock our system or leave us bereft. When friends visit, it’s natural to feel let down when the visit is over.
We should give ourselves time to adjust. Even if our illness won’t go away, the acute feelings of personal loss will.
Approaching Life Incrementally
What we’re dealing with can feel overwhelming, but we can reduce the overwhelmingness by dividing our necessary tasks into smaller parts and focusing on manageable, achievable goals.
Although we need to consider long-term changes and challenges, not everything needs to be resolved all at once. The writer Anne Lamott recounted a story about her brother, who had put off a large school project on birds until the day before it was due. The advice of Lamott’s father was: take it “bird by bird.”
Documenting One’s Self
Writing down our worries and questions confers some control and helps us decide what's important. We can also use what we've written as a guide for talking about health matters with family, friends, and caregivers.
We can give interviews about our life to children or siblings. interviews may recount activities during healthy times while also validating our life beyond the current declining conditions. Our loved ones will want to know, but telling ourselves is also beneficial.
Asking for Help
No one expects serious illness. We expect autonomy. With illness, we need to shift our expectations and learn to ask for help in specific ways. With many illnesses, the routine activities of life become ever more difficult or even impossible. We need to learn our new limits and ask others for assistance with what we cannot do. We deserve the best quality of life possible, reaching out for help when needed.
It takes time to change central concepts that define the self. The concept of living as a healthy, autonomous person needs to be rewritten into living as a person who needs medical attention and help. With chronic illness, we are writing our next chapter, paragraph by paragraph, page by page. We must not focus on our previous chapter and what we cannot do. Even though we have many practical matters to take care of, time spent adapting our self-concepts allows us to engage with these matters more realistically and successfully.
Charles Darwin said that a person who dares to waste one hour of time has not discovered the value of life. That applies to everyone, but it’s most urgent for those with chronic illness. The challenge is finding and engaging in those activities that give us the most meaning and joy.