The experience of living with CRPS/RSD is very difficult to describe in part because the sensations the CRPS owner feels in their body is a type of pain that cannot be felt by a person who does not themselves have neuropathic pain. Sure, there’s “burning, stabbing, shooting, dull, achy, pins and needles” and all that jazz, but there are other physical pains which cannot accurately be described by the English words we often use to describe pain. These types of pain involve a sympathetic response, a fight-or-flight feeling akin to an anxiety attack without being an anxiety attack, a type of pain that is nauseating at best, debilitating at worst, and which feels utterly out of control. Even more disconcerting is the fact that this sympathetic pain doesn’t neatly fit into a 0-10 pain scale…hard to explain…it just doesn’t, so you can’t even really describe it to your doctors!
With these physical pains come emotional pains. The pain of lost abilities, occupations, identity, relationships…. There are emotional hurdles resulting from the daily grind of simply surviving the physical symptoms, especially when combined with exhaustion and sleep deprivation. These emotions also tend to tongue-tie the best wordsmith. Does grief truly have any adequate description?
I get a sense of relief when I can put a concept or experience into words. Why? I don’t know. I just do. So I practice writing for my own mental health and general sanity. Besides, if I don’t scribble down my thoughts they will continue bouncing around in my head all night, keeping me awake. Might as well tickle the ivories, eh?
I also know there are other people out there trying to put their experiences with chronic illness into words so that they can explain how they feel to family, friends, those who care about them. It can be utterly frustrating finding yourself wordless when it’s important to get an idea across.
So every now and again, as the inclination strikes, I’ll write a “What’s It Like?” post describing the experience of having CRPS/RSD and all the rest (salt, trans fat, calories, etc) that comes with that bag of chips. It may not always be something earth-shattering that I wrote. Today’s selection below surfaced on a support group from which permission was obtained to share this insight. I found this insight made me sigh with that relief that says “ahhh….someone understands exactly what I’m feeling!” and seemed like the perfect explanation to help those who don’t have a chronic pain condition understand a tad more about the experience. Hope this helps….
Here are three different analogies to help you–
1. You have look at the diagnosis of CRPS/RSD as a death in the family. The death is the death of the old you or your old life. You need to grieve that death, then learn how to move on with your new life, the new you. It does not happen overnight. It is a process that can take time.
2. Having CRPS/RSD is like having a new baby. Your life has forever been changed. Your ability to go places or do anything is dictate by the needs of the baby. Your childless friends (healthy people) think you look the same and can not understand your limitations. They don’t or don’t want to understand why you do anything at spur of the moment. You will lose friend and gain new friends.
3. Pain is like a crying baby that can not be comforted because of colic or teething. There are so many things you can try to comfort the baby, sometimes it works and sometimes it doesn’t. Our pain is like that baby, we learn how to detect sudden things that can make the baby cry. And other times, it can come on so fast we have no time to react.