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What it’s like to live and love through chronic pain

by Tracey M. Lewis-Giggetts

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Truth: there are days when the pain is at its worst and I just want to cut off my husband’s arms and poke his eyes out with his own fingers.

And yes, I get that this might not be the most rational [Editor’s note: or the most Headspace] response to someone leaving their socks on the floor but when every day you feel like your skin has been turned inside out and every muscle in your body has been seared to medium rare on a hot barbecue; when you haven’t tasted deep sleep in a decade—you know, that REM sleep that every doctor, acupuncturist, and late night infomercial claims is a must—and the pain in your body has exasperated the anxiety that’s already bubbling over in your head because you still have two trillion things to do in the next hour, well, I suppose it might be OK to let yourself off the hook for such an extreme response. I do.

This is only barely an exaggeration of what it means to have a partner, like me, who lives with chronic pain. Chronic pain illnesses include multiple sclerosis, fibromyalgia, lower back pain, Crohn’s disease, and many others. My thorn? Fibromyalgia. Fibro is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. I was diagnosed with it in 2008, the same year I married my boyfriend of three years, and the diagnosis changed our lives.

For both parties, living with chronic pain can be an exhausting and confusing endeavor and, if not managed and considered carefully, will most certainly devastate a relationship. Much like dance partners must learn each other’s rhythms, knowing when to lean into a twirl or when to allow themselves to be momentarily overtaken by a move, so goes the lives of those who live and love someone dealing with chronic pain.

We are learning that the hard way.

The contemplative King Solomon was right, I suppose—there is a time and season for everything. Even in relationships.

My husband wonders why I periodically go on a cleaning tear, sweeping and wiping counters and shelves, screaming about toys everywhere, or moaning about the need to declutter the closet—again. He thinks I’m nuts. I know that if I don’t take advantage of the little bits of energy I’m given, if I don’t attempt to squeeze in everything on my to-do list within that finite amount of time, then inevitably chronic fatigue syndrome will settle in and nothing will get done. I’m not nuts, just practical.

The contemplative King Solomon was right, I suppose—there is a time and season for everything. Even in relationships. Especially in relationships tainted—or gifted, depending the day’s perspective—with chronic illness. There are days when I absolutely don’t want to be touched and can’t stand loud noises. So, yeah dude, don’t put even a finger on me and turn down the damn TV. There are other days when I absolutely need to be comforted. I need to hear soothing words. So, yes, hold me without me having to ask and tell me that “this too will pass.” The confusing thing for both people navigating this dynamic is that these variations in emotional and physical tolerance can occur back to back or weeks apart—we never know. Nevertheless, an attentive partner will learn (mostly through trial and error) which day is which and govern themselves accordingly.

The truth is, the nature of my living with chronic pain is that I don’t always know what the long-range impact my pain will have on my attitude and outlook on any particular day. I often wake up in the morning with the best of intentions. I pray. I look in the mirror and tell myself that I won’t allow my pain to make me and those I love miserable. And some days, it works out. In the words of Beyoncé’s “Formation”, “I go off, I go hard, take what’s mine”. On those days, I push through the pain; I slay my pain dragon and can readily let my light shine, being the person my husband and my daughter have come to love.

But there are still those other days. The days when the pain and all the other symptoms of my illness slay me. I mean, I know I’m not dying (most chronic pain illnesses, by themselves, are not terminal) but it feels like I am. And there’s this tension between wanting my husband to acknowledge the depth of the pain I’m feeling and, at the same time, not treating me like I’m on my deathbed.

The key to all of this, I think, is for neither party to ever, ever, take offense. Not an easy feat, I know. The couple dealing with chronic pain must be Master Po-level at not taking offense. The partner in pain must recognize that, while their loved one is wading through the muck of this journey alongside them, they may not get the signals right all of the time. We must be willing to communicate our needs clearly and concisely without derision. (Note to self: no derision.) Likewise, our partners must make a conscious effort to, well, thicken their skin. They must come to terms with the fact that sometimes the frustration and anger directed their way is more the pain and all its derivatives talking than anything else.

It’s survivable, this life. Two can even thrive once a consistent method of pain management is identified and executed. But getting there is without a doubt a challenge. More than love, more than comfort, more than some fairy tale notion of romance and saying all the right things, the two people walking this out must be committed. My husband must be committed to rolling his eyes, sucking his teeth, and then keeping it moving anyway when that random insult flies his way because he knows that I only cut with my words because my body feels like the Tin Man in “The Wiz” and I can’t make it up the steps as fast as I’d like. And I must be committed to biting the hell out of my tongue when those socks are still on the floor three days later because I know that he is doing his absolute best to help me and our daughter get on with our day each morning.

For that, I am grateful. Because of that, our relationship lives to see another day.

Tracey M. Lewis-Giggetts

As a writer and educator, Tracey M. Lewis-Giggetts offers those who read her work an authentic experience; an opportunity to explore the intersection of culture, identity and faith/spirituality at the deepest levels. Widely published, Tracey is a professor of English and Writing at the Community College of Philadelphia. She can be found online at traceymlewis.com.