The True Invisiblity of Fibromyalgia

Fibromyalgia is called an invisible illness because you can't see it on someone. Unless I tell you, there is no way to tell I have fibro. I am learning more and more about this mysterious brain illness with each day. There is so much that a brain that doesn't function properly affects. In fact, the name was officially changed to FMS, fibromyalgia syndrome, because syndrome more clearly describes the broad spectrum of symptoms & diagnosis that accompany fibro than the term disease. I am sure I have much more to learn...a lifetime more to learn.

My most recent discovery is how many things, especially people, have become invisible to me.
I have always been most bothered by the brain fog or fibro fog. I have a few people, my safe people, who I don't mind knowing I have no idea what is going on or acknowledging that I need help thinking with. But in general, it bothers me to forget things...all the time. Easy words escape me. I stutter now. I can't follow conversations well. I think more slowly. Drives me crazy! This fog also causes me to not see or hear things...for a few reasons, I think.

First, sometimes a task takes so much energy that I have to focus hard and push through fatigue and pain to complete it. I don't mean something hard. I can break a sweat walking from my bed to the bathroom some days. Folding laundry feels like running a marathon.
Second, pain is distracting. For me, pain is a constant. I can't remember a day that I have been completely pain free in months. I have hours without pain but not whole days.
Third, I can't remember people's names. I don't mean random people that I met once or twice. I mean people I've known for years. I absolutely hate that.
Fourth, talking takes energy. See my first point for why that complicates things.

Let me put this all together for you in the context that I hate it most. Church. My people. My FAVORITE people.
On a typical Sunday morning, I wake up and start the getting ready process. I almost always mess this up somehow...today I washed my face three times because I kept forgetting I'd already done it. If my make-up looks weird, now you know why. I probably forgot a step or did something multiple times. By the time I am ready, we are usually late and I need a nap. If I have remembered to take my meds, I have an upset stomach. That is how I arrive at church. To get to my Sunday School class, I have to walk from my car up the stairs while carrying stuff. That is a real hike for me...especially if I already need a nap. If we meet on the way, I might not see you. The true invisibility of fibro. My Sunday school class is awesome! It refreshes me spiritually, but doesn't last long enough to give my body a rest. It is also a LOOOOOONG way from the sanctuary. Walking from my class to the sanctuary, I might not see you....if I do, adding trying to remember a name and talk might be more than I am capable of...I hate that. The true invisibility of fibro. The morning continues on...I think you get the picture.

Some things about fibro I have accepted well. This isn't one of them. I need my people. I wonder if you knew I wanted to say hi...or ask about your life. Let me sit down, take a few deep breaths and I will stutter through a conversation with you. Will you be safe for me to really be me with? I promise I will be safe for you.