What You Can't See

I live with chronic pain, with constant familiar tendrils of things I wish medication or ice could tame. It has marked my days for so long that my memory cannot pull forth one of silence from the cursed sting. And, oh how my heart wishes it could know the gentle touch of feeling nothing.

It's difficult some days to have a disorder that others cannot see. One glance at me would identify me as someone with possibly above average health. I certainly look more capable than I am. I am also young. Youth stamps you with a label that something terribly wrong is impossible for you short of something triggered by a freak accident. Alas, here I am born with something off that took shape as I hit my late teens.

My twenties are being spent learning to live with the chronic pain and how to best steward my active lifestyle in ways that doesn't further aggravate pain. It's interesting the disbelief you gather around such things, usually from those who moderately know you or strangers.

"But you're active."

Sure. I love being outdoors and moving. I'm not as active as I would be though. Sometimes I am just struggling with how to even keep an active lifestyle. I have had to surrender the possibly of many experiences and activities. And, I am certainly not active on the bad days; the days where the pain index never dips below seven. I get it though, wanting to hike ten miles encourages the image of an able bodied person. My level of activity really should only indicate perseverance and tolerance of the pain, not the lack of.

Then comes the prodding questions. So many want to know what's wrong, what doctors I have seen, and submit me to an endless inquiry which usually is more invasive than I need. It's almost certain to be followed by their medical advice, and questions about what I have tried. There are many unsolicited things one might encounter in the world, and unsolicited medical advise is in my top three of things I do not need.

I sit here now, nerve pain in my left hand, my neck, my back, my left leg throbbing, burning and aching away. It makes my chair uncomfortable. It makes sitting, even when following PT guidelines, a hated task. As my hand tingles with loss of sensation and whispers of pain, it marks typing as a burden. My shoulder screams. Walking hurts more than normal. It starts to build silently in the background of my day like a dark shadow only I can see. Only I can see.

Outward to everyone else, I look normal. Fine. Perfect. Calm. Content even. If they watch long enough, maybe they see a step falter during an intense moment of pain. Maybe they notice that I keep rubbing my arm. Maybe they see a brief expression of discomfort as I turn. But they would have to watch long enough to see those things. Long enough to know.

It's great fun when I can't lift something simple around someone for the first time. Usually they scoff and say, "It's not that heavy, I am sure you can."

And then, for the hundredth time, I explain why I actually can't lift the object. That it's not a matter of capability but that I don't want to hurt even more.

Or they proffer a different reaction, a chastising one. "Oh, you're weak."

Frustration and anger swell so strongly in me at that accusation. There is some truth to it, years of babying my body does make it quite week, but it still stings. It's not for want or effort on my end. I just do not wish to trigger worse pain. There is already never an end in sight to that pain.

I feel physically best when I avoid all things. Emotionally best when I pursue all things. There's no wining with chronic pain. If I exercise more, I will be able to do more physically, but I will also spend the majority of my week above a five on the pain scale. With the pain, feelings of sadness creep in. If I exercise less, I will spend the majority of my week below a five on the pain scale. But, I will dislike the weakness of my body, become restless, and feel trapped and melancholy. It becomes a giant balancing act of trying to find the middle of those two. Enough exercise that I am able and happy, but still below the threshold of major pain most days.

Really, chronic pain is just acceptance and management. Mind you, for many management means some sort of relaxer or pain reliever that slightly alters the mental state. Helpful medication typically makes my head foggy and my focus fade. I loathe the feeling and avoid it at all costs. I can only imagine how those less fortunate survive in the US healthcare system. I don't blame those who blunder into addiction to escape. I get it. It would be nice to find a way to have silence outside of deep sleep. But, I need to feel like myself, and that has kept me grounded.

I wish society was more understanding of these things. Strangers ask and decide so much about me, too quickly and unfairly. And, while there is no shame to disabilities, society has taught others boundaries only exit for the able bodied. Questions will come. Looks. Speculation.

Any time my ailment is explained, I suffer a barrage of projected opinions that certainly do not help me. In an effort to empathize, people lament about how hard it must be. Why should I need a reminder of the difficulties? Are people really empathizing if they are vocalizing to me what a struggle it would be for them? What a nightmare it must be? Labeling my life under a negative lens and shoving it into a box of misfortune feels rather insulting. Dismissive. I do my best to view the pain as just another piece of me, like having big feet or poor vision. It is just an attribute to my person that I accommodate.

I think we would all benefit from a society that better held that view. That made less assumptions and asked less invasive questions. If disability was normalized as much as someone wearing glasses, I could be allowed to be weak. I could be believed without explanation. There would not be the prodding asks. I would face less skepticism and projections. My pain may never be silent, but maybe one day people might be. Maybe one day the emotional burden will not be the struggle between explaining myself or suffering through, and just the burden of learning to cope with pain.