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What Happens After the Novelty of Pain Wears Off?

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OK, I admit it: there was a certain novelty to pain when I first started showing symptoms. Concern felt a lot like affection and, somewhere beneath my fear of what was wrong, the pain made me feel special, strong, significant. I cherished the pity back rubs, I was flattered by the deep interest people suddenly took in my life and I relished the drama of sharing the details of my mystery affliction. But before you start to feel indignant, like you have been manipulated into feeling bad for people with chronic illness, please just hear me out.

Do you remember that time when you were 12 years old and got a black eye playing softball when the sun shone too brightly in just the wrong position? What about when you were 24 and tried boxing for the first time and ended up with a broken nose? Or even just your scraped up knees that came from being a child, carelessly playing on the sidewalk? In the aftermath, you wore those wounds with pride, like a great warrior returned from battle. You told those stories with tinges of humor, even as you healed from them, and you look back on them now with nostalgia and a bittersweet fondness for life that you can’t really place.

But new things get old, just like the old things did. And let me tell you, pain gets old really, really fast.

When those waves of pain first began crashing through my body, it was easy for me to tell people when I struggled to stand up or couldn’t bend over without feeling like I was being ripped apart. They cast gentle eyes down upon me, with sympathy that tasted so sweet, and assured me of what I thought I already knew – that I would be alright, that this would pass and life would continue circling around me with absolute indifference soon enough. But until then, they were there for me and would stand in strength to support me when I couldn’t do it myself.

How long do you think it takes to make carrying someone else’s burden feel like it’s your own?

How long would you brag about your broken nose if you knew it would never heal?

Try again to remember the injuries of your past, and hook onto one where your pain was at a level three or four. It was nearly intolerable, right? Not childbearing pain, but just enough to disturb your daily activities, to draw your focus, to complicate your movement. Now, imagine that in those moments of pain, someone told you that this would be your baseline physical condition for the rest of your life, with fluctuations of increased pain, exhaustion and cognitive impairment. I want you to keep that feeling with you while I tell you the rest.

I am sad a lot. It’s not my depression rearing its ugly head to remind me that it matters, too. I can breathe through this sadness, can love myself through it, can see the bright side. This sadness comes from the invisibility of an illness that keeps people from seeing how hard I have to try every day just to do what they do, from the exhaustion of wanting and often failing to show up and be the best version of myself for the people that I love through the fog of relentless pain, from knowing that all of my favorite moments from now on will be shadowed by this condition.

It’s the big things and it’s the small things. For example, I will struggle to help my friends and boyfriend move next weekend without alcohol to numb my screaming skin; I will have to fight to shave my legs later today, to go wedding dress shopping years from now, to go grocery shopping tomorrow, to make it through another week at work.

This is the heavy weight of chronic illness, the understanding that no matter where you go or what you do, you will first have to kneel down to your pain and ask it for permission. Then, you will have to try to meet standards you set for yourself when you were healthy, adamant that you can be the same (just as strong, just as good, just as ambitious, just as devoted) even when your body is not. And through all of this, you have to look people in the eye who are busy thinking about their new job or their work schedule or their love life or a million other things around which they have centered their worlds that do not involve chronic illness, and you have to try to pretend that climbing that set of stairs doesn’t terrify you, that walking out to the copier doesn’t make you want to cry, that sitting and watching a movie doesn’t still cause you pain.

When all of this started, I didn’t think about the limitations that it would force on me. Why would I? I thought I would be fine in a couple of weeks, a month at most. My heart was not heavy with all that I would lose because all the gaps between being able to say yes and having to say no were filled with reassurance and hope. The novelty of pain and struggling was short-lived; fibromyalgia is not. It does not make me feel special or strong or significant. People feeling sorry for me no longer makes me feel loved. Instead, I am just weathered and weary, wandering around in the dark of this, trying desperately to find an exit I know does not exist.

Some days, I feel unstoppable, like I can still adapt to this and live my best life, even with fibromyalgia constantly whispering in my ear, reminding me of all the things I can’t do. Today, I just feel tired. And that’s what it feels like, knowing you won’t get better.

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Thinkstock photo via prudkov.

Originally published: May 18, 2017
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