Tuesday, September 10, 2013

Chronic Ailment Translator


Social media is going to be the death of me.

I've gotten into countless conversations over the past month where tone isn't clear because communication is happening via the internet, or where I'm talking with people who don't know me and read drama into simple factual sentences where there is none. This happens on message boards and facebook, via email and in chat rooms.

I've come to find that many people experience this - and moreover, many people who live with chronic illness experience this to the extreme.

A recent social media post elicited a response indicating that all I do is complain about my health, worry about things, and dwell on my needs and wants, totally lacking in gratitude for the wonderful things in my life. I was taken aback, as I try to see the blessings amidst the chaos whenever possible. Surprisingly, it's usually possible. The more I thought about it, the more clear it became how easily things can get lost in translation. 

Tone and intent are difficult to hear on the internet. Knowing someone's background, thought patterns, and sense of humor when you're more acquaintances than friends is nearly impossible. Perhaps looking through the eyes of chronic illness and chronic pain is a lot different than looking through eyes of relative health. Maybe when I'm posting in an isn't-this-funny-way, humor is not conveyed and it's instead taken seriously. What frames my life on any given day is often my pain and/or energy levels, a decent bit of faith, and a very odd sense of humor. It seems social media needs a special translator for people living with chronic illness: the Chronic Ailment Translator (CAT). 



Status Update: Thank God for kids who clean up from dinner, load the dishwasher, and put themselves to bed when Mama has a severe migraine...and also for a husband who stops and picks up helpful things on his way home from work.
Possible Perception: She's whining about having a migraine again.
Actual Translation: I am incredibly blessed to have responsible children and a kind husband who take care of me so well. 

Status Update: I have 12 quarts of chili, 4 quarts of veggie chili, and 3(ish) quarts of applesauce cooking in four crockpots and on the stove. Bread is going in the bread maker. Pirate treasure has been assembled. Is it time for my nap?
Possible Perception: She's whining about needing a nap again. 
Chronic Ailment Translation: I just did in a few hours what it took me all of last Summer to accomplish. Amazing, isn't it? But perhaps doing that amount of stuff in that short of a time was too taxing on my chronically ill body, especially since I didn't sleep well last night, so I shall joke, as I always do, about needing a nap, especially considering the incredible improbability of nap-taking due to the enormous horde of children in my house for whom I'm responsible.

Status: What a pain in the butt. Literally. I hurt my hip/lower back on the right side and have been told not to sit, stand, lay down, walk too much, and stay still too long by various health professionals. Apparently I need to learn to levitate.
Possible Perception: She's complaining about her health again. 
CAT: This is humor, people! Literal pain in the butt (haha). Fact: hip/lower back have been hurt - information needed to set up the rest of the post. Conflicting advice has been given, so learning to levitate seems the only viable option- what's a girl to do? Hahaha. 

Status: I was going to do things this afternoon. Instead I took a nap. I didn't mean to - it just snuck up on me.
Possible Perception: The freaking nap thing again!!!
CAT: This really needs translation? You've never sat down for a minute or two and awoken some time later having accidentally fallen asleep? Don't "normal" people experience this, too? Like my Dad after Christmas dinner? 

And so to everyone who comes in contact with me via the internet, I just want you to understand:
I can be tired, hurting, needing, wanting, and still be thanking God for all I have. I can discuss how people not living with chronic illness, etc. cannot understand what I'm going through while still praising God for everything I can do. To deny what I'm going through is to deny my life and my experience. I AM in pain (constantly, even on the only pain medication I can take, and often more pain than a normal person can tolerate), and I am tired (exhausted, really - it's part of the illnesses I have, and it's nothing that can be described to someone who hasn't experienced it - for goodness sake I nearly fell asleep WALKING the other day). I don't say this to complain, I say this and post about it because it's my life, it's my truth, it's what I live every day. I actually find humor in many of these situations and blessings in them all. These things are merely facts about my life. I say or post or blog these things in the same breath as I give thanks to God that I'm able to type, speak, even think. I communicate these things because there are many others going through the same things I am, and it's nice for all of us to know that we're not alone in our pain. I'm also allowed to at times be frustrated with my life and say so. That doesn't mean that I blame anyone or think anyone should fix my life. It also doesn't mean that I don't celebrate all the wonderful people and things God has put into my life - always. 

And I'll keep in mind that most people don't understand what it's life living with a chronic illness or chronic pain - and will try to be patient and kind in the midst of misunderstanding. 


Thanks to the very kind words of friends and family after my most recent bout of needing a CAT (Chronic Ailment Translator), things were resolved in a peaceful, loving manner. Sometimes I'm not so lucky. So whenever you're communicating with someone with a chronic ailment, always keep your CAT handy. If you don't have one, try Compassion, Amity, and Thoughtfulness. 

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