What are some of the words that people with lupus most dread? "Tell me about your pain." Why? Because lupus pain can be much too big and complex to accurately relate to a number between "1 and 10," the rating scale doctors often use to measure pain. And if you have lupus, it seems like it's something healthy people can never truly understand.
In the WebMD Lupus Community, lupus activist and patient Christine Miserandino talks about the difficulty of communicating to others what it's like to live with lupus. She also tells about her "spoon theory," a method she has devised to visually describe daily life for a person with lupus.
When teaching the "spoon theory" to another person, Miserandino starts with a handful of spoons, each representing a daily task or activity for someone who has lupus. She tells the other person to plan his day using the spoons, removing one spoon for each completed task or activity for that day. The limited supply of spoons represents the choices a person with lupus must make as they go through the day. Once the supply of spoons runs out, that's it -- no more spoons or activities for the rest of the day.
The spoon theory helps other people to understand the decisions that people with lupus must make every day. Miserandino's friends and family are now so familiar with her theory that when they want to know how she's doing that day, they'll often ask "how many spoons" she has left.
Attaching a descriptive word to pain, like "achy" or "piercing," also helps, Miserandino says.
Members of the community shared their very vivid -- and sometimes even humorous -- ways to describe their pain. One woman said she tells people she feels like the side of beef that Sylvester Stallone punches while training for a boxing match in the movie Rocky. Another person, recalling how she nearly died in childbirth, says she tells people, "I wish I felt that good now!"
Do you have a creative -- and effective -- way of describing your pain and life with lupus? Share your tips with the community.