Relinquish

If I could I'd fold myself away like a card table

A concertina or a Murphy bed, I would

But I wasn't made that way 

-Oh my God, Whatever, Ryan Adams

And behold, a leper came to him and knelt before him saying, “Lord, if you will, you can make me clean.” And Jesus stretched out his hand and touched him, saying, “I will; be clean.” And immediately his leprosy was cleansed. 

Matthew 8:2-3

There is an intense isolation in chronic pain.

I don’t know about you, but it’s important to me to be understood—not just in matters of my various physical conditions. I long to make sense to people, probably because I rarely make sense to myself! If others can make sense of me, then perhaps I’m not such a jumble of a person. If you understand me, maybe I can understand myself more. When I don’t feel heard, I feel out of sorts, out of touch. I’m guessing that we all have these kinds of feelings and reactions when others don’t “get” us. 

So when we add an invisible chronic pain condition to the mix, it gets complicated. You can’t see any evidence of how I feel. You can’t see the fibromyalgia “cape of pain” across my upper back and shoulders, you can’t see how all my muscles and joints fees inflamed. Even my skin feels on fire sometimes. You can’t see the lack of sleep due to being so damn uncomfortable, how I lay awake into the wee hours due to body-wide aches, despite taking pain medication or rubbing essential oils into my skin or turning off electronics an hour before bed time, or any of the other myriad of fixes for insomnia I’ve tried. You can’t see the monthly cramps that pierce my pelvis like a knife, bending me in half and making me sick to my stomach. 

How do I reconcile my predilection for being understood without much fuss with having unseen physical conditions? Now, the fear of not being believed is one I struggle with on a daily basis, let alone merely being understood. I’m beginning to realize I’m asking a lot when I ask others to understand me these days! I’m asking you to believe something you can’t see, after all. I’m asking you, in some sense, to step into my shoes, imagine yourself in my place on my couch, in the line at the pharmacy, filling out paperwork at the doctor’s office. 

It’s very easy to start feel like I’m invisible. Like it’s not just my fibromyalgia that is unseen. Like if you can’t see my pain, you can’t see me. It’s easy to assume I’m merely the extent of my pain, of what I’m feeling. It’s a battle to counter these feelings, let me tell you. Especially when I can’t always rely on the mirror of others to help me figure things out. If others don’t believe me, maybe I’m making this stuff up. Maybe it’s all my head. Maybe my pain isn’t as serious as I think it is. Maybe I don’t need to rest as much as I think. But then I calm down and think about the last 4 years or so, and remember. I remember the aches and the struggles and the efforts to figure it out. I remember the suffered relationships, the cutting back of activities, the many lessons of learning to communicate well.

These things are slowly teaching me, though, to relinquish my desires to be understood. Because that’s actually not the most important thing. It’s not even attainable! Even if I didn’t have fibro, you still couldn’t understand me completely. You still would have to take my word on how I feel. I still would have to figure out how to own my feelings and responses and choices without the approval or the opinion of others. So it will always be difficult. And even though I feel alone and invisible sometimes on my worst days, I know the people around do see me. My awe-inspiring husband believes me and takes care of me and takes on so many responsibilities out of love and joy and a desire to help me. He believes me more than I believe myself often. The friendships and relationships I have became so much closer, more honed because things have changed.

And not only by my husband and family and friends and co-workers. The One who saw and touched the ill and those on the outskirts sees me, too. He dignified the existence of the invisible and untouchable ones by physically touching them. He recognized the powerless and their situations, and saw them. Wherever we are at in our lives, we can be bold because Jesus sees us. He has compassion on us, He is waiting to heal us. Let us not fold ourselves away in our pain and our circumstances, but be free to kneel before Jesus and say, “If you will.” 

Megaphones and Haircuts

"I wish that I could be like the cool kids,
'Cause all the cool kids, they seem to fit in.
I wish that I could be like the cool kids, like the cool kids."
-Echo Smith, Cool Kids

For Christ’s love compels us, because we are convinced that one died for all, and therefore all died. And he died for all, that those who live should no longer live for themselves but for him who died for them and was raised again.
The Apostle Paul, 2 Corinthians 5:14-15


I made it to my haircut appointment a couple weeks ago. I’d had one scheduled in late August, but had to cancel last minute due to extreme fatigue and achiness. It’s been quite the struggle this fall to get past my aches and pains, so I was pretty proud of myself for managing to get to my appointment. My hair was in quite the state, I assure you. Two months past its expiration date, needing a desperate thinning and trimming. Plus, everyone knows that Haircut Day is just another term for Best Day Ever. 

I’ve been going to my hair lady now for nearly five years-she’s fantastic. Whenever I see her, I’m in constant awe of her style, her makeup, and her hair…naturally. It’s always PERFECT. It is, of course, the number one trait you should look for in a hairstylist-ENVIABLE HAIR. She’s always sweet, kind, funny, and laughs at all my jokes (the second thing you should look for in a hairstylist). Plus, my hair always looks perfect after I walk out of the salon-mmmmmm. Happiness.

Whenever I get my haircut, though, I’m reminded of how my fibro makes me look to others who aren’t around me all the time. I’m jolted out of my usual space. Normal, everyday conversation topics suddenly seem awkward.

How are you? Horribly achy and tired. Completely sleep-deprived. Oh, just fine! Just a little tired, that’s all.

What have you been up to? Hanging out on my couch. Nothing much, just the usual. You know.

Planning any trips? Uhhhh, to the pharmacy? Nah, not any time soon. Maybe for our anniversary?

What’s new with you? Trying a new vitamin supplement! Woohoo! Making it to this haircut! Haha!

I have told my hairstylist a bit about my chronic life, though-filled her in what fibromyalgia is, what endometriosis does. It’s a bit disconcerting to see someone else, although kind and interested, try to understand. I can see the confusion, reflected back in the large mirror that seems to amplify my tired face. It feels like I’m trying to explain my entire life when I explain what fibro’s done to me. I feel like I have to apologize or validate myself for my chronic pain. My fibro keeps me from “getting out there,” and so life feels small at times, especially talking to someone I only see occasionally. It reminds me of the impact fibro has on me. I feel like a bit of a freak in these times, to be honest. It’s sure not my hairstylist’s fault-it’s mine. I have these expectations of what my life should be like, what it should have been by now. I compare my life to everyone else’s, and that never ends well, even if you don’t have a chronic pain condition. I hear other’s stories and observe their high moments on social media, and feel laaaaaaaame. I think of all the things I want to do, the things not done, not experienced. Talk about the road less traveled; sometimes, it feels like no road is being traveled at all right now.

And then somehow I’m usually reminded that we all have something. We each have something about us that makes us feel lame, like we’re on the outside, like we don’t have what everyone else has. Things that we struggle to make sense of, let alone to other people. We all have story after story after story about our struggles; how we’ve succumbed to trials at times, and how we’ve overcome them. We have health things, we have personal bents, we have histories, we have issues. We don’t always see ourselves or others clearly because of our something.

For me, fibro makes it so clear that I can’t depend on myself for happiness or security or peace or a sense of identity. Shockingly clear-like plunging into an icy river. Fibro, and everything it leaves in its terrible wake, makes me ask a lot of my own questions, about life, faith, identity. All the things that matter.

Is God really for me in this? 

Why hasn’t He healed me? 

Can God really use my pain and turn it into something good? 

Where is the hope that my faith promises? 

Can I still live a good life with this chronic pain?

Complicated questions that can’t all be answered instantly or flippantly or easily. In the past few years, I find myself rereading known Scripture passages and testing them against my new normal. While I don’t know why God hasn’t taken away this physical pain, I can say with confidence that yes, God is still for me. He is instilling in me new roots, a new and growing sense of identity, which has nothing to do with what I can do or produce or experience, and everything to do with simply being loved by Him. Daily I choose to follow Him-I choose to love Him and my neighbor. Only because I know God, the Maker and Redeemer of this world, loves me. It sounds so simple, yet it’s taking a lifetime to realize. I’m slowly realizing that God only wants a relationship with me-this is what He wants for me, this is what I was made for.

Perhaps God is using my fibro to weed out perfectionist ideals, my insistence upon independence, or any number of things that keep me at arm's length from Him and others. C.S. Lewis puts it so eloquently in his book, The Problem of Pain, “We can ignore even pleasure. But pain insists upon being attended to. God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is his megaphone to rouse a deaf world.” I hope that whatever season we find ourselves in, whether we battle against struggles or find ourselves in joyful places, we will find and see that the love of God does indeed compel us, infusing our daily living with His joy and hope and peace.