Chronic illness and limited daily energy

There is a great explainer in the Washington Post called Spoon theory: What it is and how I use it to manage chronic illness. The article, written by journalist Fortesa Latifi and illustrated by Lara Antal, has terrific graphic novel-style illustrations, including the one shown above. It conveys how those suffering with chronic illnesses (for example, long-haul COVID, chronic pain syndrome, fibromyalgia, CFS) have limited daily energy available for daily life, and the amount of energy available often varies from day to day.

Here is a short excerpt:

In the chronic illness and disability world, there’s something called “spoon theory.” Writer Christine Miserandino started it while explaining to a friend what chronic illness feels like, and grabbed a handful of spoons to make her point.

In the theory, each spoon represents a finite unit of energy. Healthy people may have an unlimited supply of spoons, but people with chronic illnesses have to ration them just to get through the day.

Spoon theory has become a shorthand for chronically ill people to explain how they’re feeling and coping day-to-day. And for me, it’s become a simple way to share with the able-bodied people in my life what I have the capacity for.

The article is a must-read, and the illustrations really encapsulate the issue of limited available daily energy.

The article discusses the “spoon” tecnique as a cogent way to explain to family and friends what it is like to live with a chronic illness. As a Social Security disability lawyer, I need to explain the issue to administrative law judges and to disability examiners. It is an uphill battle. Social Security’s disability process tends to focus on “nuts and bolts” issues, like how much can you lift and carry and how long can you sit and/or stand. The fact that on many days you just don’t have the energy to complete a normal workday is not really part of the framework.

Of course there is often discussion at hearings of “good” days and “bad” days, but it is a work-around. The basic architecture of Social Security’s disability process is not designed to adjudicate such claims. I am particularly concerned going forward with the long-haul COVID cases, which often should be evaluated in terms of “an RFC for complete inability to do sustained work-related activity.” See EM-21032 REV section 7.