Honesty Part II: Masking the Appearance of Trouble

While in worship at the ACFW conference, I heard slight whispers in the crowd.

"Look at her--she's really into it!"
"I think she's one of those pentacostals or something."
"The song must really be speaking to her."

I know these ladies never meant for me to hear them. After all, by all appearances, I was completely wrapped up in the moments of worship. My hands were raised, albeit only at the elbow--I usually extend them higher during powerful songs, my face was uplifted, my body swayed side-to-side and trembled slightly, and tears rolled down my cheeks before splashing onto my blouse. As a singer on my Baptist church's worship team, I do often do all of the above (tears are pretty unusual, though) when the moment is strong and I'm enveloped in the world of praising and praying to my God. I stop caring that my Pentacostal roots are showing and that I'm probably moving too much for the comfort of my congregation. I just do as I'm led to do.

My appearance of being lost in a moment with God during the conference wasn't reflecting the truth. I wasn't that into the song--it was one that, while it was nice, wasn't truly affecting me. One hand braced around my middle, the other raised from the elbow, I was beseeching God for something other than worship. I was desperately seeking help. I was in serious, extreme pain.

Is she praying...or struggling with a migraine? How can you tell?

Living with fibromyalgia is a challenge beyond any other--random flares of pain, some of them intense enough to make me stop breathing or double over into a ball, happen without warning. I already knew my disease was going to be an issue due to the long hours in a car to travel to Indianapolis, sleeping in a new bed, not getting much sleep due to activities, and a lot of sitting throughout the day. The intense flare in the middle of worship, however, caught me off-guard. It was the strongest one I had had in over a year. The tears and shaking proved it.

Since it's incurable, I've accepted my fibromyalgia as my thorn in my side (a la apostle Paul). Since preventative medications don't work on my system, and I avoid pills as much as possible due to the risks of addiction and damaging internal organs, I'm left with pushing through the pain with the determination of a soon-to-be mother. It also means that I try to mask my pain as much as possible. There's not much anyone can do besides maybe put pressure on a trigger point or massage a cramped muscle into submission. There are very few people I know who would be willing to do this even if I had the gall to ask--and there are very few public situations where this wouldn't attract unwanted attention. Letting others know when I'm hurting gives me a label of "weak" or "delicate"...not the labels I want if I want to be able to serve in the ways I was made to do. No one asks a weak woman to babysit their children. No one asks a fragile person to cook a three-course Mexican dinner for a Bible study. No one allows her to play softball or help move furniture or carry in instruments or renovate a nursery. I can do these things, even if occasionally I pay for it with a flare or two. My life is a chance game, but I refuse to play it safe and let my malfunctioning nervous system win. So I hide the truth from even the people I love and who love me.

This is where the bigger problem comes in. While flares rarely reach a 13-14 on the 10-point scale (ACFW conference was a 14), I do have 9s or 10s occasionally. I had one during a church service while sitting next to my boyfriend. I hid it for the ten minutes it lasted, gritting my teeth, regulating my breathing, clenching my fists, and praying hard. After the service, my boyfriend mentioned that he was really touched by how emotionally moved I was during the prayer--he had felt me shaking. Exhausted, I told him nonchalantly what really happened. The next day, he called to say that I am to notify him in some way any time I have a flare around him--using code words, whispering in his ear, something. The request confused me. "Most of the time there's nothing you can do, and knowing I'm in pain will only hurt you as well, so why do you want to know?" His answer came with a strong "duh" tone. "Uh, so I can be concerned?"

Knowing someone you love is hurting and being powerless to do anything about it is one of the most hopeless and devastating situations to be in, at least in my opinion. Being honest about how my body's torturing me makes me less of a friend/partner and more of a burden. If there is something he can do, I can understand telling him, but all the time? Does he even understand how often I go through these flares and pains? Isn't it enough that my fibromyalgia makes my life difficult--does it have to affect him and other people as well? I'm not opposed to letting people know I have the disease necessarily, but exposing the realities as they occur...that's terrifying.

I'm still struggling with my strong sense of independence on this one. I really don't know if I'll be able to go through with whispering his selected code word into his ear the next time my back spasms. I really don't know if I'll be able to reveal to others when I'm not shaking due to the movements of God or low blood sugar (a nice excuse, really, because you usually get chocolate out of the deal) but rather due to muscles tightening past normal limits. I really don't know if I'll be able to show the fear and anxiety in my eyes instead of closing them when I realize I'm not able to breathe for a few seconds. The answer to where boundary lines belong with this disease is out there, somewhere. I hope I find it soon. Before the next flare around my boyfriend, anyway.