There are all kinds of different types of pain.
- One kind is the pain we feel when we touch something that is too hot, too cold or too sharp. This kind of pain exists to try to protect us by activating the withdrawal reflex – we move our hand or other body part away from the potential harm. It comes from the most primitive parts of our nervous system.
- Another kind of pain is when our body is injured. This kind of pain helps us heal by discouraging physical contact and movement of the injured body part. The injury could be from a wound, an infection or some other inflammation. It is activated by our immune system. And it can be so intense that it needs to be reduced by some kind of treatment.
- There is still another kind of pain that is caused by some kind of abnormal functioning of our nervous system. There has been damage to our nerves and pain signals have been distorted in some way. These mixed up pain signals can cause our brains to interpret pain as more or less severe than it actually is. Basically, this is how most doctors tend to think of chronic pain – that it is a product of damaged nerves and is not “real” pain but something else. I think this is part of the reason why doctors try so many different treatment approaches including psychological approaches. They just don’t know what causes it.
I have a theory and that theory is that this pain from bad or damaged nerves also has its source with inflammation. The inflammation in our nerves and other parts of the nervous system triggers the immune system just like a physical injury or an infection from an invading virus or bacterium. Because we already have an abnormally functioning nervous system, the immune system gets its signals crossed and begins to attack normal cells instead of disease or injury. And from these attacks comes the kind of pain that makes up almost all chronic pain. The kind that never ends. The kind that disrupts lives.
There is a broad spectrum of autoimmune diseases. I think diseases like fibromyalgia and ME/chronic fatigue syndrome are subsets of this spectrum. It’s part of the reason why these diseases share so many symptoms of other diseases and are difficult to diagnose. I think the same is true of what I have – paraneoplastic neurological syndrome – and many other disorders that are yet to be found and named.
But pain is more than the clinical definitions or theories on why we might experience it. And more importantly, chronic pain is something far more complex than the signals sent to the brain.
Pain changes you. You might learn to deal with it but it never goes away. It’s kind of like the nasty heartbreak that you feel when you lose someone that you dearly love.
It can be described. You can put words around it. But you never quite feel that you have expressed it in a way that truly communicates its magnitude. You believe that you come up short in telling someone else how bad you really feel.
You look for other words, other descriptions.
“People are afraid of themselves, of their own reality; their feelings most of all. People talk about how great love is, but that’s bullshit. Love hurts. Feelings are disturbing. People are taught that pain is evil and dangerous. How can they deal with love if they’re afraid to feel? Pain is meant to wake us up. People try to hide their pain. But they’re wrong. Pain is something to carry, like a radio. You feel your strength in the experience of pain. It’s all in how you carry it. That’s what matters. Pain is a feeling. Your feelings are a part of you. Your own reality. If you feel ashamed of them, and hide them, you’re letting society destroy your reality. You should stand up for your right to feel your pain.” -Jim Morrison
While he speaks of the emotional side of pain, I find these words to be quite meaningful for someone with chronic pain. I think when we overcome our fear of truly expressing our pain, we also gain great strength. Feel your pain. But fight to live your life in spite of your pain!
“Having a chronic illness, Molly thought, was like being invaded. Her grandmother back in Michigan used to tell about the day one of their cows got loose and wandered into the parlor, and the awful time they had getting her out. That was exactly what Molly’s arthritis was like: as if some big old cow had got into her house and wouldn’t go away. It just sat there, taking up space in her life and making everything more difficult, mooing loudly from time to time and making cow pies, and all she could do really was edge around it and put up with it.
When other people first became aware of the cow, they expressed concern and anxiety. They suggested strategies for getting the animal out of Molly’s parlor: remedies and doctors and procedures, some mainstream and some New Age. They related anecdotes of friends who had removed their own cows in one way or another. But after a while they had exhausted their suggestions. Then they usually began to pretend that the cow wasn’t there, and they preferred for Molly to go along with the pretense.” – Alison Lurie, The Last Resort
I find these words to be very descriptive of how most people end up acting around someone who has a chronic disease. People try to help by sharing all the cures that have worked for someone else. Eventually they give up. And when they do, they don’t want your illness to be there. They would prefer you pretending not to be ill at all. Be just fine. Wear that fake smile. But don’t. Keep talking about your illness. The people you really want to be around will try to understand.
Finally I want to talk just a little bit about how chronic pain can send you into that terrible dark abyss called depression. Depression comes, I think, from being unengaged. Our illness has, for the moment, overcome our lives and left us wondering lost in a deep, dark forest from which we can see no end. But don’t give up! And don’t close up completely.
“Listen to the people who love you. Believe that they are worth living for even when you don’t believe it. Seek out the memories depression takes away and project them into the future. Be brave; be strong; take your pills. Exercise because it’s good for you even if every step weighs a thousand pounds. Eat when food itself disgusts you. Reason with yourself when you have lost your reason.” – Andrew Solomon, The Noonday Demon: An Atlas of Depression
To me, the best thing to try to do when you are depressed is simply to do something. Anything! Re-engage in some way. Merlin, in the quote below advises us to learn. That’s something we can try. And as we do engage in something like learning, we can find a way to climb back out of the hole we have found ourselves in.
“The best thing for being sad,” replied Merlin, beginning to puff and blow, “is to learn something. That’s the only thing that never fails. You may grow old and trembling in your anatomies, you may lie awake at night listening to the disorder of your veins, you may miss your only love, you may see the world about you devastated by evil lunatics, or know your honour trampled in the sewers of baser minds. There is only one thing for it then — to learn. Learn why the world wags and what wags it. That is the only thing which the mind can never exhaust, never alienate, never be tortured by, never fear or distrust, and never dream of regretting. Learning is the only thing for you. Look what a lot of things there are to learn.” – T. H. White, The Once and Future King
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