Imagining If Doctors and Loved Ones Could Experience My Chronic Pain for a Day

I hear it all of the time: “If the doctors, family, friends and strangers in my life could walk in my shoes for an hour, day or week, they would be more compassionate, etc.” I get it. Nobody who doesn’t have this pain could understand, no matter how hard they try, and even if two people had the exact same pain, their bodies would process the signals differently.

The reality is, there is no way to gain that understanding. Let’s pretend there was a device that measured our pain, both before and after our brains processed it. Let’s pretend someone could be attached to that machine and the signals could be transmitted to those who we need to understand. Most of us believe the person would collapse to their knees, screaming in pain, begging to make it stop… do anything to make it stop… including death. This includes mental pain.

But, they would not have the same experience.

There are factors that would make the experience less painful for them:

1. They would know the pain will stop. All they have to do is disconnect the machine. The pain is worse when you know there is nothing you can do.

2. They would still not know the frustration of fighting for a diagnosis, having the pain being ignored, being judged. The pain they felt would be taken seriously, the cause known and documented. They would not know the hurt and shame we had/have, not just from others, but often from ourselves, pushing to “suck it up,” keep up appearances.

Of course, on the flip side, there are things that will make the pain seem worse.

1. They have not built up coping mechanisms. We have learned to “ignore” the pain. Watching Netflix, meditating, coloring and other activities help us focus on something besides the pain. We “get used” to the pain we have. When the pain gets worse or a new pain arrives, we go through the process again. But we learn to deal.

2. They don’t know what treatments will help them. We know when we need ice, heat, massage, Epsom salt bath. We know at which point we have to stop. We have learned to count our spoons.

Finally, there are things that make it seem better and worse.

1. The person would not have had the pain over years. Oftentimes the pain started at a much lower level. They would feel the full intensity of the pain, all at once. A sudden and overwhelming pain. On the other hand, the years of pain have worn on us. Mentally, physically, many of us have suffered. We can’t remember the last time we were without pain, let alone comfortable. We don’t know what it is to sleep a restful sleep. We either toss and turn, wake too often/early, or we take pills that knock us out for too long, waking in a dizzy fog, often still exhausted.

2. They would not know the source of the pain. Whether it was a one-time event  or something over time (childhood abuse, domestic abuse) this caused the brain to change. Without this knowledge, the damage to the pain, could cause it to be worse and less. Those experiencing the pain for the first time wouldn’t have this change, making it less. At the same time, not knowing the source can make it more difficult to process. Try to rember a time of intense pain. The flu, a surgery, etc. Do you actually remember how it felt? Can you feel that pain? I can’t. The experience would be completely different.

The good news, though, is there is a way to give our doctors, loved ones, strangers more understanding. They can experience both sympathy and empathy, even if their empathy will fail. Find a way to describe your pain. Explain that you can’t remember not being in pain, that you haven’t been comfortable in years, can’t even remember what it was like. Encourage them to research your condition as well as read blogs by others with similar experiences. You cannot make someone care. You cannot make someone try to understand. You can try to protect yourself from their negative responses.

Stay strong. Find the beauty and happiness in life. Even if it occupies all of your energy to find it. Allow yourself to grieve, wallow in our sorrow and loss — with a time limit. Gentle hugs.

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