The Confusing Art of Communicating a Life in Chronic Pain

Dear Audy,

The physical pain of CRPS has been highly restricting me for several weeks now. Well, it’s been doing that for over seven years, but what I mean to describe is a higher level of incapacitation than I was dealing with before the slump began. Mentally, I’m coping really well, which leaves me existing in a strange mind/body duality that I’m trying to figure out how to communicate.

This is a world of sharing, for those who choose to participate in the whole social media thing.

Me, Instagramming a day of forced lying down.

Me, Instagramming a day of forced lying down.



Sometimes, I wonder how healthy people perceive my updates. A lot of people online will exploit any sort of tiny complaint for sympathy and a million x’s and o’s. If you’ve never seen an “I have a cold” post followed by a bunch of “Oh, that’s TERRIBLE” comments, then you haven’t been on social media for very long. Whilst I don’t really care about whether or not anybody else wants to fish for sympathy for whatever reason, I do worry that people who follow my posts might think that I’m doing the same.

How do I share pain without misery? How do I share isolation without loneliness? How do I share incapacitation without frustration? How do I share a life of chronic pain without being a chronic complainer?

“Complaining and whining can be distinguished by the nature of the dissatisfaction and by our motivation for expressing it. Complaining involves voicing fair and legitimate dissatisfactions with the goal of attaining a resolution or remedy. When we voice legitimate dissatisfactions but do so without the goal of attaining a resolution we are merely venting. And when the dissatisfactions we voice are trivial or inconsequential and not worthy of special attention, we are whining.” – Guy Winch, Ph.D, The Difference between Complaining and Whining, The Squeaky Wheel


For me, an important difference between complaining, venting and whining is the way it makes me feel afterwards. Lately, I’ve been experiencing some extra pain and discomfort in my left hip, knee and ankle. It’s an elevated level of pain to the usual drone of CRPS and a more muscular-skeletal feeling pain than burning nerves.

Being pained and incapacitated is a legitimate dissatisfaction, so whining about the actual problem is not exactly possible in accordance to the definition above. What I am able to do, however, is whine about how this pain effects more trivial parts of my day. You know, “I can’t go for a waaallllk”, “I can’t bake cooooookies”, “I don’t want to watch the criiiccckkett” (specific for those who don’t like cricket, nor do they love it, but they totally get that reference because they fell for sports fans).

How does whining make me feel? Well, mostly amused because these days I’m joking, but I haven’t always been this clearheaded. Were I feeling weak, I might just fool myself into believing that the things I am whining about actually matter and then begin to feel genuinely upset about them. In that instance, the main accomplishment of my whining would be to add a smaller, more immediate problem on top of what I’m already dealing with. Creating problems from nothing is a pretty silly thing to do, but I dare you to claim that you’ve never done it…

Whining will only make the problem bigger, but I can vent about it. Sometimes, venting can help you to release something that’s been boiling inside, however, let venters beware that there can be downsides. If you’ve been reading this blog for a while, you’ll know that I can spend a lot of time venting. Years, even.

How does venting make me feel? Different now, than earlier. It used to feel good to just blurt out anything and everything that was wrong. Venting about the same, unrelenting problem for years can stop helping and start hurting my chances of moving on and out of that emotional loop. There are only so many times that I can feel the same feelings, release them, generate them again and release them before it starts to seem like they are just too domesticated to be returned to the wild.

They’re my feelings, I have to own them and deal with them instead of yelling them at anyone who’ll listen. Dealing with them involves a lot of introspective work on changing my beliefs and perspectives, it’s a lot harder than venting, but I am feeling more calm and in control the longer I work at it.

Venting can be super helpful when you have a lot of anger to get out. Venting can be ridiculously satisfying in the short term. Eventually, feeling angry can become grating and tiresome and so learning to understand and hush the sensation before it builds up to explosion point becomes a more useful goal.

I can definitely complain about my pain. Complaining doesn’t have to be a negative thing. In the instance that I couldn’t figure out why I’m in extra pain, I’d show up at the GP, get complaining and get some sort of action plan happening. As it is, I know that this discomfort is being perpetrated by a little twist of the pelvis and that the most likely reason for this is muscles tightening when they really don’t need to be. I’ll be going to complain to my osteopath about this later in the week and then he will do some rubbing and adjusting and there’s an excellent chance that I’ll end up feeling better.

Complaining isn’t weak or a character defining thing, it’s basically just asking for help when you need it.

The ugly truth is that I live with a highly debilitating case of Complex Regional Pain Syndrome. The confusing part about sharing my life is that I tend to feel better if I’m not constantly acknowledging that this is an “ugly” truth. When it’s just the truth, I can get to dealing with what I can still deal with, I don’t have to be held back by feeling horrified by my situation.

It’s easy to perceive a life of pain and illness as pretty shitty, that is, unless you’re the one living it. It’s way harder to perceive you’re own life as pretty shitty, those sorts of feelings are truly horrible and lead to things like frightening suicide statistics. In order to play the hand I was dealt, I have to keep finding ways to perceive a life of pain and illness as not really that shitty and perhaps even awesome sometimes.

If I just keep working on communicating this point, maybe my strange mind/body duality won’t seem so strange at all. I mean, you read this whole post, you totally get it now, right?

Love & Pondering,
Caf

P.S. I am attempting to utilise the Facebook page for this blog more often to share links that you might find interesting and personal updates related to coping with chronic pain. This helps to stop me from spamming everyone I have ever met from my personal account. Click on over to Like Rellacafa because you want those posts, or just because my grubby dogs think that you should.

YOU CAN'T IGNORE ME, I'M FLUFFY.

YOU CAN’T IGNORE ME, I’M FLUFFY.



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