Chronic Pain Is a Hard Teacher: Six Months of Medical Weirdness

Sometimes I look back and remember January 22^nd of this year in a weird “before and after” way.  That was the last day I had no pain.  I walked without thinking about it.  Like everyone in our area, I was fixated on the upcoming snow storm.  I had no idea what was about to hit my life when I would wake up the next morning with inexplicable pain in my foot.

Six months and more than six doctors later, several medical tests and lots of dollars later, I am still feeling my way along this weird journey.

For three months I couldn’t walk without a foot brace.  My pain was very public, and I got a lot of pitying looks and expressions of sympathy.  Something about a mom limping along with three little ones in tow gets a lot of “oh, poor you!” which to be honest was annoying at times and gratifying at others.

After three months my pain changed—my foot, though still tender, was well enough I put the foot brace away and haven’t worn it since.  At the same time my pain spread to my knee, upper leg, and hip.

These last three months have been particularly hard for me emotionally.  I have never experienced chronic pain before, and it’s hard to put into words.  On a scale of 1 to 10 it hovers around a 1, 2, or 3.  So it’s not agonizing, and I’m okay.  It’s always bearable, but it’s always there—like white noise in the background was how someone aptly described it.  Static on the radio but you can still make out the song.  An alarm beeping “pain, pain, pain” in my brain as the accompaniment to whatever else I am trying to do.  Without the foot brace, you can’t tell from looking at me that anything is wrong, but I feel that wrongness constantly inside me.

Chronic pain is sharpening in both good and bad ways.  I get tired more easily and I get short-tempered and sharp with people and need to go back and apologize.  But I feel as if chronic pain has sharpened my perspective, too—everything is a bit clearer and starker to me.  I don’t have all my former fears and insecurities; I’m not trying to come across like someone who has it all together; I’m not devastated by rejection; I don’t have time and energy for all of it so I’m trying to focus on the essentials.

I feel the loss of the identity I had—qualities I attributed to my personality that were actually just my privilege, qualities like being fit, being energetic, walking fast, working out, feeling great, being healthy.  Those used to define me, and they don’t anymore.  Instead of being my ambitious, bouncy, thirty-something self, I feel as if someone attached a ninety-year-old leg to my body, and I’m thinking things like, “Can we just sit down now?  Whoa, walking down this hill is rough!  Oh, my hip.”  Really? I tell myself.  Really?  This is you?

I am most depressed by the uncertainty—if someone could tell me for sure if and when I would feel better, I could handle that and work toward that goal.  The thought that I might live the rest of my earthly life in pain is wearying to me.  Other people assure me this will not be the case, but after plateauing for three months, I don’t feel that assurance; I just try to believe it.

The weirdness drives me crazy.  If you’ve been reading this blog post and thinking, “What is wrong with her?  What happened?  Did I miss something?”  Believe me, I’ve been asking those same questions, too, and I’ve been learning the hard way that even really good doctors can’t always give definitive answers and don’t have magical fixes. 

Anyone’s best guess is that all of this was caused by Lyme, since the other tests have all come back clear, but no one really knows.  Lyme is weird, and my symptoms are definitely weird.  Each day is different and unexpected—pain in different areas to different degrees at different times, in what appears to have no rational pattern or predictability.  I’m grateful that so many of my symptoms are objectively verifiable by others; otherwise I think I would be going insane.  How I will feel tomorrow is always uncertain.

Going through the credit card bill is never my favorite activity.  But this last month going through the bill I felt so discouraged by how expensive my health care has been.  Prescriptions, supplements, copays—it all adds up to figures I don’t want to be spending on my health; I want to be putting those toward my family and toward fun things.  I would feel better if I knew the things we were spending money on were working.  But I don’t.  We just try our best with the information we have.

So these are the circumstances I’m sitting in right now—and still having a hard time believing this is my life—what happened?  This is the frame I’m trying to put around the picture of Truth, the context I’m reading the Bible in.  I don’t know why God said yes to allowing this in my life, but I do know it is chiseling away at who I am and giving me a harsh reality in which to see and apply truth.

A friend encouraged me to read Romans 5:3-5:

“Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.”

Then I wrote my own paraphrase:

“I rejoice in my Lyme—the pain, the uncertainty, the weirdness, the expense—because I know this is producing in me the ability to last through difficulty without quitting—I know that this staying power is molding my character—and that character is helping me hope.  I am not going to be ashamed or disappointed.  The Holy Spirit is the pitcher given to me, pouring God’s love into my heart.”

I’m not going to minimize how it feels to push yourself through the motions of caring for your children when your body is screaming “no”—how dark physical depression can be when you stare blankly at a Bible verse about hope and wonder why it’s not registering—when all you can think is “How long, O Lord?  Will You forget me forever?”

If Truth isn’t true in the middle of pain, it is never true.  Sometimes we have to walk through the dark to test what we really believe.  What does it feel like for God’s love to be poured into your heart on the day of unanswered prayers?