So, I am one of those lucky folks who still works despite having chronic, pain-filled illnesses and conditions—RA, fibromyalgia and osteoarthritis—that fluctuate in intensity and severity. I know that quite a few people in my position can’t work anymore, and I am thankful to have found a great and compassionate company that provides Family and Medical Leave benefits, and encourages me to move up and beyond. I started stocking overnight in general merchandise, moved up to cashier, and right now I’m working as an internal temp on an ecommerce project. Work couldn’t be better.
Besides my boss and my assistant and a few others in the ‘know,’ I hide my illness at work.
At the end of the day I don’t want to be judged by my illness.
I am much bigger and much better than my diseases will ever be in my life. I never want to be dismissed because of my illnesses. I never want to be denigrated or diminished. I have way too much to offer. I am smart, artistic, compassionate and very loving. I am super analytical and I totally enjoy working with data – which is my other passion besides my family and my art.
It is hard enough making the sacrifices that I do make just to function at a “normal” level. I could not bear being tossed aside as incapable or less than.
I have days where I really have to struggle to hide how tired I am. Hiding it is like being in one of those old cartoons where a small snowball starts at the top of a hill and ends up burying everything at the bottom in an avalanche of cold and snow and debris, no matter how quickly the lovable cartoon character may turn to face it and pointlessly try to stop it. I try to focus really hard and push through the ache as it is creeping out of the tendrils of my RA and setting off my Fibro, which in turn ricochets off my RA inflamed joints – only to be bounced back and forth endlessly between the two stodgy diseases moving and pinging faster and faster by the second.
Simultaneously, the fibro fog garners speed – swirling around my brain like a California fog bank out of the Bay area whipped up by 40 mph wind speeds coming off the ocean. I move ever so slightly, hoping that no one notices how much I shift in my seat from the pain in my hips and my knees – hoping my movement isn’t a distraction from the conversation. I have to gather my strength – hoping to lasso enough energy to make it to my desk, hoping I can just stay there all day and avoid the necessary trips that go along with my project. And, when I feel well enough to go out for our usual trips, I have to take pain pills and sit down often enough so that my body isn’t blown out for the next day or so leaving me a shell of a person until I recover.
I drink coffee now for the first time in my life. I have always run on my own energy. Now, I fight off my sleepiness and bounce my feet under my desk, or pinch the inside of my arm to try to focus better.
I get up as early as I can and have taught my kids to help me get ready in the mornings. My son will make my bed, and help pack my lunch. He also feeds the dog first thing. My daughter, who has ADD and moves at her own pace, tries to get through her checklist as quickly as she can and will help with my lunch, make sure I have one of her special “Mama drawings,” get me my cane, and anything else I need. By the time I drag my swollen, sore, inflamed body into my office building by 8 o’clock, I am already harried, tired, and ready for a nap. There are days when I discreetly eye the open space under my desk and wonder if I can pull off a George Kostanza from Seinfeld – could I actually sleep under my desk without getting caught?
Don’t get me wrong – I have good moments and even good days. I have moments of reprieve where the pain is steady at a tolerable level. But I also have days where it takes me 3 ½ hours to get ready in the morning without even finishing my makeup, only to hobble out the door while I yell at the kids to hurry up, and hide in the bathroom at work long enough to finish. I hope and pray that all that gets asked of me is to sit and work at my computer and just not walk. My lower half is worse than my upper half so that when I have a bad day I may not walk, or get off the couch, or – despite my best efforts – I may just collapse in tears from walking across the room.
I try to hide as much as I can. I just can’t help it sometimes. My damn body won’t always cooperate, so that I end up tired and haggard and lost inside of me, grasping at the edges of reality and sanity, hoping to hold on until I get a little reprieve. Taking pain pills is no guarantee because mine makes me sleepy and I can’t be falling asleep at my desk. I have to figure out how much to take so that I can still function, yet not take too much so that I am incapacitated from the meds, instead of just my symptoms.
At the end of the day, I am sure I have been unsuccessful at hiding it. Someone has to have seen the exhaustion on my face and the dark circles under my eyes. Someone has to have heard me gasp because I am breathless from walking down the hall. Maybe everyone around me is too polite to say anything and they go out of their way to keep from embarrassing me. In the meantime, I still try for my own sanity’s sake to hide the pain and retain some shred of my own dignity.