Years ago I attended a workshop for health care workers; the purpose was to increase awareness for what it meant to live with an increasing disability.
Each person in the group was given a number of small pieces of paper. The first direction was to write the names of the four most important people in their lives on separate pieces of paper, then four activities they enjoyed and finally four important possessions, leaving their papers stacked and sorted in front of them. There was much teasing and table talk about kids and spouses, who to include, who not and whether sex was an appropriate activity to list. I remember very clearly and was impressed with how busy some of these women were, their activities were skiing and traveling, their items things like cottages and swimming pools.
With all of their pieces of paper, in three piles in front of them, the instructor walked them through a case history of a patient with rheumatoid arthritis, describing a scenario of increasing pain, loss of independence and mobility. At each worsening stage of the patient’s disease, the group was asked to take away one piece from each pile of paper. That meant losing a thing, an activity and a person, cutting them out of their life. The first time was a shock, the second more startling, but when it came to the end and many of the attendees were forced to decide between spouse and children, the purpose of the workshop really hit home.
Most of us worked in Long Term Care, so this was a good exercise. It made us much more aware of the losses our residents suffered before they were admitted to the nursing home and what that admission really meant. It was losing that final piece of paper.
Through the years I conducted a form of that workshop with various staff, and was always moved by their response, the change in attitude and increased understanding.
Now I find myself in a different situation. I’m not the staff member learning to empathize with the resident’s situation; I’m living it, giving up pieces of my life just as I once gave up those pieces of paper. But how can I explain this to friends and family without going through all these steps?
By chance, as I was browsing through Pinterest, I found the solution. It’s called The Spoon Theory. I found a post, ‘Living with Lupus’, written by Christine Miserandino. She writes about a time when a friend asked what it was really like, living with lupus. I thought she was lucky to have this friend, someone who wanted to look beyond the list of symptoms, the stuff one might read about, someone who really wanted to understand what her friend was going through.
Christine explained it very well with her Spoon Theory. Where the workshop gave an explanation of changes over years of a disabling or chronic disease, the Spoon Theory makes it more immediate, as it applies to daily life. The women were in a restaurant at the time, so Christine gathered together a bunch of spoons and held them in her hand. Most people start their day with an unlimited number of possibilities. The spoons are an analogy for what it’s like living with a chronic disease. With a chronic illness one is constantly counting spoons, as the number is limited and you can run out before you’ve accomplished what you want or need to do that day. Just the effort of getting up, showered and dressed may deplete your daily quota of spoons.
Christine did us all a service by giving us a way to explain what it’s like to live with a chronic and often invisible illness.