How do you describe your pain? Numbers on Pain Scale, Adjectives, Silly Weird Pain Faces.
I hear it all the time from doctors and nurses: “Tell me your pain on a scale from 1 to 10”. I always cringe at the thought of summarizing my pain and fatigue down to a number. I also get scared at the thought that I have never felt below a 4 or 5. How can every patient from a broken leg, to a chemo patient, to a stomach virus have the same silly faced pain scale picture to choose from?
We all know that pain and fatigue is different for everyone. Some people who have lupus use great adjectives to describe their pain, like a “piercing” pain in their shoulder, or an “achy” pain that feels like they’re bruised all over. I’ve found that using descriptive words helps others understand my pain because I’m painting a better picture for them to relate to and understand.
We all have ways to communicate how lupus affects our lives. As an example, I once used a handful of spoons to describe to a friend what it was like to live with lupus and to be forced to make certain choices when it comes to performing the everyday activities that most people take for granted. People with lupus have to parcel out their daily activities and tasks because they often aren’t able to do everything they want or need to do. To illustrate this, a spoon is removed from the bunch for every daily task completed to show the choices that must be made by a person with lupus. I still use my “spoon theory”with family and friends as they ask me how many spoons I have left, or even give me spoon gifts to brighten my day.
I know that as much as I try to communicate what I’m going through, it sometimes feels like only other people living with lupus really get it and understand. That’s why message boards like this are so important.
What methods have you tried to explain what living with lupus is like? How do you describe your pain to others? Do you use the pain scale, descriptive words, or maybe that chart with all the expressive faces on it?
Author: Christine Miserandino
Christine Miserandino is the founder of butyoudontlooksick.com. She has won numerous awards for her writing. She has been featured in newspapers, magazines and television. She was a guest expert for Alliance Health, LupusConnect.com and community TV host for WebMD.com. She prides herself on being a patient advocate, Online Influencer, and health brand ambassador but her favorite role is that of a mommy. You can find her at @bydls on twitter or on facebook.