Pain comes in three parts, and this is helpful to know when you are in pain and feeling trapped. It’s also helpful to know if you are tired of pain and learning how to make it go away.
First, there is the physical source, the injury or illness that is causing the pain.
Second, there is the neurological response to that injury or illness.
Third, there is the psychological reaction to the pain signal.
Let’s go into more detail about how these are separate and distinct elements of pain.
The physical source is not the same as the pain. This varies depending on what’s going on, but there are lots of examples. For instance, a few people have a rare genetic condition in which they cannot feel pain at all. This is very dangerous, because they won’t always realize if they are burning themselves or walking around on a broken bone. Another example would be a cancerous tumor, which might grow undetected because its growth causes no pain.
Another way to put this is that pain is not guaranteed to match its cause.
A neurological reaction may not correspond perfectly to illness or injury. One example of this is referred pain, when the pain is being caused in one part of the body but it shows up elsewhere. Twenty years ago, I had a nerve plexus in my shoulder, which didn’t hurt, except that it caused sharp stabbing pains in my thumb and occasional numbness in my hand. Another example would be pain with no obvious cause, or something that is thought to be “genetic” but that turns out to be easily manageable with lifestyle modifications.
Another way to put this is that the root cause of pain can be mysterious and hard to diagnose.
The psychological reaction to a pain signal is variable. This is important because it’s something we can learn to control on our own, regardless of what’s going on. And that’s a hot take.
A contrary opinion.
Something that often offends people!
What we want to hear when we are suffering is exquisitely calibrated empathy and consideration. We want levels of caring and support that are, sadly, perhaps non-existent. We want validation and recognition of how hard our circumstances are. Even if we got it, though, it wouldn’t help. Kindness is no analgesic. Even if everyone else on earth knew how to behave with perfect tact at all times, it wouldn’t remove the pain or the source of the pain.
See also: Grief
What we don’t really like to hear when we are struggling is that there is some kind of secret key to make it all go away.
The reason for this, I can say with experience, is that it always comes across as blame. If I can do anything at all to control this pain that is taking over my life, then shouldn’t I already have done it? If my pain is manageable, then am I not at fault for not managing it? Why are you bothering me with this, you cruel and heartless naysayer? What are you implying?
There is something about the concept of chronic pain that makes it feel permanent, monumental, a sort of organ that only the sensitive have. My pain belongs to me and defines my life experience. Telling me I can make it go away is like denying a fundamental part of who I am!
Telling me that I can stop being in pain is refusing to accept my perspective, rejecting my description of my life and my experience. I’m telling you one thing, plaintively, and you are shutting me down and telling me something else.
You don’t know what it’s like!
This can be crazy-making for the person who genuinely does know what it’s like, who is sincerely trying to help.
Honestly, who else wants to talk to me about migraine headaches other than another migraineur? Who wants to talk with me about parasomnia disorders other than another insomniac? Et cetera.
When I hear about another person with a migraine, or another person with a sleep disorder, or someone else who was diagnosed with fibromyalgia, I usually start crying. It’s embarrassing. Tears start coming down my face. I want to drop everything and talk to them right away. I can help you! It doesn’t have to be like this!
My emotional overwhelm stems partly from fear that what I’ve been doing so successfully will stop working, that I’ll wind up back in the tar pits.
I remind myself that twenty years ago, when I was first diagnosed (first migraine, cancer scare, fibromyalgia), not all the information was out there. Doctors weren’t telling me anything helpful, just saying “it’s genetic” and “no, sorry, there’s nothing you can do” when I asked about lifestyle improvements. (WRONG, thanks for nothing). The things that did eventually work would not have been things I wanted to do, or understood how to do.
I thought all I could do was meticulously explain to everyone I met exactly how my illness worked.
I thought I needed to do this so that people would know to let me off the hook.
In the tar pit, everything on the surface level looks like an unmanageable amount of work. What, showing up to things? I went to the movies in my nightgown once because that was my version of fighting hard: Hey, at least I’m leaving the house, what do you want from me?
I felt challenged on all sides. How dare people question my experience or try to help me troubleshoot my situation? Can’t you see how difficult things are for me right now?
I recognized myself when I happened to be present during an awkward conversation. One party wanted to talk about her chronic pain issues, only the other person countered that she had an appointment with her oncologist the next week. This is by no means the only time I’ve overheard a Battle of the Health Problems.
Who wins these discussions? The one with the fractured spine or the one who went into anaphylactic shock and has to carry an Epi pen?
Look, the only way to win is to beat the illness, because pain is the real enemy here. That’s where that tricky old third part to pain comes in. How we react to it.
I started to win my fight when I realized that my level of pain was consistent (which means predictable), and that my condition was not degenerative. I found a sliver of gratitude in that, that at least I wasn’t going to wind up in a wheelchair or on an oxygen tank.
This is my nature. If I got to that point, I’d probably start scraping the barrel and looking for some other small sliver of gratitude. Such as that at least it was me, not one of my nearest and dearest. I’d take it on myself before I’d wish it on someone else.
I started to win my fight when I got curious. How does it work? What’s the state of the art for cutting edge research in this field? When I found out I might have cancer, I went directly from my endocrinologist’s office to the public library, where I found two books on the subject. I’d read half of the first one before my bus pulled up to my stop, and I’d finished both before bedtime the next day. My natural curiosity led me to pay attention and start tracking my symptoms, looking for patterns.
Taking pain apart, disassembling it into smaller pieces, is a way of figuring out how it works. Once we figure out how it works, why then, we have a realistic chance of turning it off. That’s what I did and I hope that I can help others to do the same.
I've been working with chronic disorganization, squalor, and hoarding for over 20 years. I'm also a marathon runner who was diagnosed with fibromyalgia and thyroid disease 17 years ago.
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