If you are interested, please also see my last blog post, which included a brief discussion about talking to doctors about your chronic pain, as well as some resources to help with this matter. In this post I would like to discuss the difficulty of explaining chronic pain to people without pain, as well as to provide some resources to help in your endeavors. These resources include a Ted Talk and a video you may want to show someone without chronic pain, as well as a useful simulation. You can find the resources below.
Explaining chronic pain to someone without chronic pain is difficult. Many, many people I have meant often refuse to believe me that there are people, such as myself, who are simply in pain all of the time. Many of the Chronics (my code name for chronic pain patients) I know express frustration about the difficulty of trying to make those close to them understand that their pain is real and can actually be quite debilitating, even if they seem to be doing "alright on the outside." I can understand this frustration, and I often feel the same way. Yet, I think I understand why people without pain seem not to understand the gravity and reality of chronic pain. I have been in constant or near constant pain nearly as long as I could remember, and it took me a long time (well into my teenage years) to tell my parents this. It didn't take me that long because I didn't want help with my pain--it took me that long because I had always been in pain, that's the way my body has always worked, and it was hard for me to understand that there are people who aren't in pain all of the time.
So, even when people without chronic pain are being as understanding as they possibly can (and I greatly appreciated the non-Chronics in my life who have helped me in many ways) disbelief or confusion may sometimes seep through because they have no or little frame of reference for pain that never shuts off. I sometimes explain it this way--try to close your eyes and imagine a color you have never before seen. It can't be simply a hue of something else--like green, and it can't be just several colors flashing. It has to be a new color that has never been seen before. Could you do it? Of course not--you can't because you have no frame of reference for it, just like people without constant pain may not be able to understand how constant pain can even exist. Yet, this doesn't mean we shouldn't try to help those close to us understand our pain. We may never be able to completely simulate the experience, but we can help provide just a bit more reference through metaphors, simulations and videos. I hope you find these resources useful.
1. Ted Talk by Elliot Krane-"The Mystery of Chronic Pain)
Link:
http://www.ted.com/talks/elliot_krane_the_mystery_of_chronic_pain?language=en#t-113453
In this Ted Talk, a doctor uses anecdotes, props, and metaphors to explain the concept of chronic pain, as well as some of the science behind chronic pain. Krane describes chronic pain as a disease, not a symptom. He also says that chronic pain is like being stroked with a feather but feeling like you are actually being stroked by a blazing blow torch--the littlest things that others do not even notice could put a chronic pain patient in a world of hurt. This video may help illustrate the gravity of chronic pain to people who have never had chronic pain.
2. The spoon theory
Link: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Christine Miserandino, a woman with Lupus, originally created the spoon theory to explain her condition to her friend. This article explains a simulation that chronic pain patients can do to help others understand their condition better. In this simulation, spoons represent the limited amount of energy that chronic pain patients have. If you need a way to help your loved ones understand why you cannot do certain things, you may consider using the spoon theory simulation.
3. Do you know what it feels like to live in chronic pain?
Link:
https://www.youtube.com/watch?v=7gwqQoYLnVw
This video specifically discusses migraines. Yet, I think it can be helpful for people with many different pain conditions. It is very short (about one minute) but the collage of short testimonies demonstrates many debilitating effects of chronic pain, which includes many symptoms besides physical pain.
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