When the Unknowns are Worse than the Pain

There’s a high emotional cost that comes with a life of chronic pain. It presents itself in a variety of ways. One of — if not my least favorite — is the unknowns of it all. With a regular injury, illness, or stable disability, there’s a predictable pattern. With a chronic pain situation, there’s always an element of unpredictability, even if there are some predictable parts of life with pain.

Of course, you can never predict everything, even in a perfectly healthy life, but the life of a chronic pain patient is generally on the opposite end of the spectrum — much closer to total unpredictability and chaos than it is to predictable patterns. The emotional costs include the usual depression and frustration, of course, but also social costs — disappointments and lost friendships. It’s a difficult road to travel, and I still don’t know the best path to take. Often there isn’t one.

The thing I really hate is when it impacts my relationships. I’m having a good week, so I accept an invitation to go to lunch, for example. Then something happens — anything that might take my precious, excruciatingly planned lifestyle off course — and I end up in extreme pain, without sleep, at a doctor’s office, etc… and I have to cancel my plans. With other friends who live with chronic illness or injuries of any kind, this is no big deal. We generally have a full cancellation policy, with no questions asked, total friendship intact. We know what it’s like. We completely empathize. And while we’re sad we can’t meet, there’s no judging involved.

With healthy people, they often don’t understand how severe the situation really is. Even if we have to cancel for reasons seemingly unrelated to the chronic pain, it’s all related. Really, it is. If the kid gets sick or the cat gets hurt or the husband has to leave town, it all impacts the delicate balance of the pain management routine and throws it out-of-whack. So while the immediate reason for cancellation might be something else, inevitably, the end result is more pain for the person in the trenches. For me, simple things like sitting at a lunch or driving, have become akin to a nemesis. So adding that kind of torture on top of whatever else is going on in my life, if something goes wrong, is literally adding insult to injury.

Once the unknown is known, there’s an immediate period of anger and frustration. NOT AGAIN. NOT NOW. What will the consequences be? Will I lose a friendship or a professional opportunity out of this? Will my depression settle in for a week? a month? How long will it take me to get back to a stable place? Will I ever be able to reschedule this thing? Or renew this opportunity? I’ve lost more professional opportunities and friendships from having to miss meetings than I can count. The unknowns rule my life.

But what is the alternative? You’re damned if you do, damned if you don’t. If you say you can meet someone, and you don’t, you’re in a bad place. If you don’t meet with them, you lose out as well. So you’re better off trying… at least that’s the way I see it most of the time. Most of the time, I try to not plan anything I don’t have a 75% chance of making it to, although I can get clouded on that when it’s something I really want to do, but it’s a challenge. I’ll signup for more things based on my own hopes. But then again, the alternative would be giving up. And I can’t do that.

So the reality is I will lose opportunities, for personal and career pursuits. I’ll never be okay with it, but I can try to accept that it’s a part of life with pain, as long as I don’t sink too far into the abyss with the unknown.

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No Way to Win

I’m having a very difficult pain flare-up. I won’t go into detail about why in this particular post because that’s not what’s troubling me… I get pain flare-ups of different shapes & sizes every so often. It’s part of life with neuralgia. Some are more difficult than others. What I’ve learned over time, however, is that often the emotional drain on my relationships is worse than the physical pain itself. It takes a toll.

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