I suffer from chronic pain. My version of it is trigeminal neuralgia. Neuralgia is described by some as “stabbing, burning, and often severe pain due to an irritated or damaged nerve.” The nerve(s) can be anywhere in the body. Mine are in my head, and I can set a flare off via clenching the jaw. The problem is structural, caused by damage I sustained in a car accident twenty-three years ago.
I should’ve held out for a bigger insurance settlement.
Neuralgia is agonizing. I struggle to find words that will explain its full awfulness. Misery. Agony. Torture.
It’s like having a pickaxe slam into my head at random intervals twenty-four hours a day for a week plus, ten to twelve times a year. The pain is crazy-making.
I function when my neuralgia flares. I get up. I take my pills, and I do things. I go out. I write. I continue to interact with other humans. I don’t exercise much, but I do carry on with life (albeit with a degree of bitching and moaning). But because I carry on, because I’m not prostrate and screaming, people start to think it’s not that bad.
And when I can’t pull it together, when I can’t rise above the pain to think, much less function; when I beg off visits and cancel plans, people get testy. There’s a downside to soldiering on. People fail to appreciate that there’s a struggle.
But what am I supposed to do? Take to my bed for a week every month or three weeks? Because that’s how often I get attacks. Ten to fifteen times a year, averaging seven days per flare, for twenty-three years. Should I have given up that much of my life to prove I suffer? What good would that do? How, exactly, would hiding out serve me?
Neuralgia is one of the leading causes of suicide among chronic pain sufferers. This doesn’t surprise me: it’s utterly brutal. There’s a limit to what we can endure.
There’s surgical treatment available. You can have the affected nerves severed. Possible side effects include trouble swallowing, trouble breathing, and facial paralysis. I haven’t signed up.
I get that other people’s problems are not our problems. We can’t fix everything for everyone, and my pain is my issue. I deal with it. But I wish, sometimes, that people wouldn’t assume I’m overreacting or have a low pain threshold when I can’t maintain the stiff upper lip. I’m not that desperate for attention. I’m not faking it when I flinch nor courting drama when I involuntarily convulse. And yes, your cousin’s neighbour’s sister’s migraines sound awful too, and I’m glad giving up wheat helped.
I don’t need sympathy. Okay, maybe a little. Coddling when you feel punk is nice. But understanding, that’s an ice cream sundae with sprinkles on top. Or cheesecake. Whatever dessert’s your jam (even jam). And if I never hear “again?” when I tell people my neuralgia has flared, that’d be great. Chronic means chronic, in case you were curious. *
I get that my pain can be a source of irritation and frustration for those around me. I’m sorry that people with chronic conditions are an inconvenience. Perhaps, instead of getting irritated and impatient, the people who aren’t afflicted could try empathy? Or even patient and a non-loaded silence?
Other people’s problems can be difficult and inconvenient: how do you suppose the people actually suffering from pain feel?
Be kind. You never know what someone is going through.
*If you’re curious, the dictionary describes chronic as, “persisting for a long time or constantly recurring.” Chronic pain is the Terminator of pain. It’ll be back.
From Famine to Feast. 
You never know what someone is going through is so true, I’m sorry to hear about your pain Em. I used to work with a girl who had Fibromyalgia and after a while I had trouble being sympathetic and got frustrated with not being there when I needed her.
I tell myself I can deal with psychical pain easily vs mental pain but I don’t really know to your degree.
Take good care of yourself.
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Thank you. I’m all about the hot bean bags of late.
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Sorry to hear that you suffer from neuralgia. It’s one of the worst types of chronic pain because your control options are severely limited and mostly ineffective. I am sure you have researched every possible avenue of pain management so I’ll spare you the unsolicited advice. My witnessing of people in chronic pain has shown me how totally altered a person can become and that’s really sad to me. So true- we never know what is going on in someone’s world. Thanks for this!
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Thank you and you’re welcome.
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I’m sorry to hear that neuralgia is causing you so much pain and suffering. If only people would take the time to consider that people with chronic conditions will repeatedly suffer.
I’m experiencing a form of insomnia at the moment, and it’s been for several months. A friend of mine knows, and I spoke to him yesterday about it. His response was “you had a good night’s sleep a couple of weeks ago. Instead of validating my experience he attempted to convince me that a rare night’s sleep is good enough. Validation is all that I need.
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Thank you. I’m sorry about the insomnia. A lack of sleep is hard. And, hearing people tell you why you shouldn’t feel the way you do is so very frustrating.
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It’s annoying isn’t it.
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On the bright side, it allows the opportunity to catch up on really bad, late-night television.
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“But I carry on. Which means, the people in my circle, the people I encounter, don’t think it’s all that bad.” That. How insane is this? I have people believing that there is nothing wrong with me and that another person is absolutely dying just because “they can’t get out of bed.” … I will not turn this into a negative rant.
I hope that today it’s not painful for you.
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Thank you. It’s getting better. Stress sets it off some. I will try and remember to relax.
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Trying to cope with chronic pain, and enjoy ones existence becomes a juggling act. The anticipation of ones next unbearable episode of pain, weighs heavily on the mind. The Term; “Unless you’ve walked a mile in my shoes”, does apply here. Because, we can be judged by those around us for their own inability to see our pain. And, when the balls come crashing down onto the floor, we alone…are stuck to pick them up. https://mercuryrizingopaque.com/2020/04/05/living-with-chronic-pain-during-covid-19/
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Thank you for reading. This is a great point.
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This is beautiful. Thank you for sharing something so brutally honest with us about chronic pain. We need more of these personal pieces.
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Thank you so much. For reading and the comment.
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