If you were to see me walking down the street, you might see a short and heavyset woman with short brown hair and glasses. If you talk to me, you’d hear my soft voice and my valley girl accent. You’d probably see the pewter Celtic cross I’m wearing. What you don’t see, however, are the struggles I face daily.
I have fibromyalgia, an auto-immune condition that all the commercials on TV say is caused by overactive pain receptors. About half of the medical community believes it exists while the other half thinks that the believers are sloppy diagnosticians. It’s a diagnosis of exclusion in which you have to account for a number of other conditions like hypothyroidism first and for which there are no perfectly accurate blood test markers. I’m pretty much the poster child — I have a vast majority of the tender points as well as several of the associated conditions: depression, migraines, and IBS.
You might me sitting politely in church while my kid does laps around the sanctuary. What you don’t see is the stabbing pain in my shin that is migrating to my elbow nor do you see the twinges of pain in my lower back. You might hear my knees crack as I get up to catch him before he breaks something or leaves out the doors of the narthex but you’re not seeing the tears I’m fighting back because there is no painkiller on the market that can stop the pain. Gabapentin helps but it doesn’t kill all of it. On Sundays when the pain is too much, you don’t see me in church because it hurts too much to move and I’m breaking the third commandment by staying balled up in the recliner with “Winnie the Pooh” on a constant loop to keep Daniel from destroying too many things. I’m blessed to be married to a pastor who brings me Communion on almost every Sunday I miss because otherwise, I’d be pretty much cut-off from the means of grace. I’m also faced with pretty much constant fatigue and insomnia at night. This doesn’t help with the depression.
You might see me wearing sunglasses into a building, watch me walk past you, and think, “Wow… she is such a snob.” Actually, I have a migraine and light is painful. I’m out and about because we’re either out of diapers, out of Pedialyte (and Daniel is throwing up), or I’m dealing with cabin fever and just need to GET. OUT. OF. THE. HOUSE. where I’ve been for two days in a ball of photosensitive nauseated exhaustion; and the grocery store means that I can restock my supply of ramen, ginger ale, or whatever I’m eating/drinking to keep the calories going/blood sugar up while the nausea is in full force. I’m sorry that I’m not greeting you — I just want to pick up whatever it is and go hide in a dark room.
You’ve seen me scour the menu and made a snarky comment about my inability to decide or that I’m a picky eater. Actually, I’m trying to find something that isn’t going to a.) cause more inflammation or b.) trigger my IBS. Believe it or not, it’s kind of embarrassing to be out in public and feel your lower G-I seize up. If I cut a conversation short, it’s because I’m making a beeline for the nearest bathroom so I don’t end up in a humiliating situation. I know where every clean bathroom is between southern California and northern California along Highway 99 as well as every clean bathroom in my town, the town to the north, and the town to the south. I’ve ended up with muscle tears and strains trying to reach a bathroom in time. I have to actually *plan* errands with Daniel to coincide with times that are not within a specific period of time after a meal because only Trader Joe’s lets me take the cart into the bathroom with me and he’s too prone to crawling under the stall doors and making a run for it. (Did I also mention how incredibly germphobic I am? Let’s not go there.)
I seem withdrawn to you and you make snippy remarks about how the pastor’s wife is anti-social. Actually, I’m fighting the urge to stay in a ball under the covers with them pulled up over my head. On days when Jon is working and I have Daniel by myself, I’m curled up in a fetal position in the recliner debating the merits of sprinkling goldfish and Cheerios in strategic places around the living room and hallway to keep him busy while “Winnie the Pooh” is on a continuous loop. I’m probably starving but the thought of eating is too much for me. If I’m actually out in public, it’s probably because I have to eat somehow. I don’t say more than “hi” because I’m feeling too inwardly drawn to make small talk. I might even be wearing sunglasses because my eyes are red and my face is blotchy from crying.
I’m blessed to have mostly parishioners here who are understanding — I haven’t had that luxury in other places and I’ve had people tell me how snobby and anti-social I am because I either slipped out of church before they could talk to me or I didn’t hear them greet me and accidentally snubbed them because I was so focused on getting through worship with my headache pain. My husband has had to apologize to irritated people who are spitting nails because I didn’t see them in the grocery store or pharmacy and didn’t say “hi” because I was either running for a bathroom or in so much pain from a migraine that I’m in “grab and go” mode.
So please… don’t assume you know what is going on with me or with the average person on the street. Many of us have chronic conditions that we appear to hide well but are still just as real as the ones that manifest outwardly.
