Thursday, September 17, 2015

My Struggle with the Invisible Disease

I slowly make my way to my classes. It’s a day of the flare up so I have to use my cane to keep me from becoming a quivering heap on the ground that has been touched by only God know what. As I pass you, you avert your eyes. Yeah, I noticed. And it’s okay. A teacher once told my class that noticeable infirmities make people uncomfortable and they don’t know how to act or react when they come across a person in that situation. Even worse, you wouldn’t be able to guess the excruciating pain that I struggle with every day because it can’t be seen. I wear a mask to cover my ailment and I smile even when it hurts to do so. This is called Fibromyalgia.

I want you to know that I wasn’t always like this. There was a time when I was hiking, running, swimming and walking great lengths. My stride used to be fast and my muscles toned. Now, my stride is little more than a shuffle and my muscles deteriorate as I speak. I lift my backpack and instantly feel my muscles quiver from the weight of all the textbooks and my laptop. My back protests the pressure but settles as I adjust to the weight I put on it. I then check the time and begin my day knowing it’s going to be a long one.

Why am I telling you this? Well, I really don’t know. I do know I don’t do it for sympathy or pity. I don’t expect anything from you. Perhaps, it’s because I want to be understood. Someone once said that the truth will set you free. I hope it’s true. While I know there is no freedom from this daemon, I can at least hope that some aid will come.

When you look at me, I feel like you don’t really see me. What do you see? Some overweight short ugly woman with dark eyes and lines etched in her face? Do you see a pathetic creature that has to use a cane but there appears to be nothing wrong with her? No broken bones, no physical manifestations? I’m sorry if I put you off, I really don’t mean to. While I look like everything is fine, I can assure you that the agony is very much real.

I have good days and bad days. On my good days, the pain is a dull throb. It’s still there and I may twinge a time or two, but I can bear it. I laugh and smile and my spirits are okay. I enjoy sitting with you and learning with you. I listen to the lectures and laugh with you when the professor says or does something amusing. I go home and make supper and delight when I have guests to eat with me. For a time, the daemon sleeps.

Then the daemon wakes. I can be in a deep sleep, be in class, or getting out of bed to turn off the alarm clock that goes off at 5 AM every morning. The daemon roars and pain shoots through my back. My breath leaves me in a sharp gasp and sometimes it drives me to my knees. My body trembles and my muscles contract. If I’m lucky, I’m able to drag myself back onto my bed. If I’m not, I’m stuck on the hard floor. I’m all alone. I curl up into a ball and wait for the waves of sharp stabbing pain with aching throbs to cease. Tears fall from my face soaking my pillow or carpet while I ask God “why?” I wonder if I did something to anger him to where this condition was given me as punishment. I wonder if there will be any salvation from it. It feels like someone is beating me with a club and sometimes I check myself to see if there are bruises because the sensation is so real. Minutes turn into hours and I’m trapped. I can’t call for help because there’s nothing anyone can do. I can’t breathe out a cry because all of my energy is draining from the daemon torturing me. It hurts to breathe, it hurts to speak, and it even hurts to smile. I am alone through the entire process.

Eventually, the pain begins to lift a bit. I check the time and see that if I hurry, I’ll make it to Greek class and be on time. I force myself to my knees and then to my feet. I look into my mirror and see the lines and the trail of marks that my tears left behind. I see the storm in my eyes that dulled the green fluorescents with hopelessness and despair. I quickly shower and endure the sharp needles that assault my exhausted and aching body. I wash my face and brush my hair and teeth and stare in the mirror again. I look tired and pained, but I fix my features to look serene. I leave my apartment and solitude, knowing that I must hide my pain. You ask me how I am and I’m sorry to say, I do lie. I tell you I’m good and then ask you how you are, hoping that you’re having a better day than I am. I’m grateful for your smile. I feel guilty for my deception, but I fear your discomfort and that you’ll be put off if my mask falls and my agony reveals itself.

I live in a world of absolute twilight. It may be high noon but in my world, I live in darkness and
light. I feel like I’m constantly alone. I’m isolated in my pain as another daemon assaults me. The daemon carries depression, self-loathing and even hopelessness. Do you know what it’s like to crave the touch of another but fearing it at the same time? I love your embrace that is warm and full of friendship. I live on those tokens, but I can also feel your hesitation and fear of hurting me. One wrong move, one hug that is too tight on the wrong part of my body can call the daemon. I appreciate your care to not hurt me. I also appreciate your courage to risk it by showing me that you appreciate my existence. It’s a little ray of your sunshine that briefly holds back the twilight of my life. You walk away to your classes and your life and I walk to mine. The depression comes back, reminding me of my loneliness. This road is hard to walk on and it drains me all the time. I walk this road every day and sometimes I find someone else walking on a similar road. Both of us acknowledge each other and move on with the brief comfort of having an idea of how the other feels.

At the end of the day, after hours of lectures, homework, grading and interacting with people, I may finally go to bed. I lay down and I hear the daemon growl, preparing to strike. I curl up with a heating pad and look to heaven with a simple prayer. Sometimes an angel intercedes and the daemon sleep, other times, he ravages me with this disease. I close my eyes as the hot tears form against my eyelids. I tell myself that dawn will eventually come. I finally drop my mask and fa├žade and for a brief time, I allow myself to be honest, to feel the emotions and pain that I push aside every day.

To you I may look normal and healthy. But, I promise you that what I feel is very much real. When you comment that there can’t be anything wrong with me, it pierces my heart and soul. I wish I can show you how wrong you are. But I just stand there as shame fills me and my eyes cast down to the ground. After that, my eyes never leave the ground. I can’t bear to look at you and the others because I know that the cane and my general appearance can be intimidating and off-putting. I don’t expect you to understand, but please, remember that I am still human. I love you and love being around you. I do my very best to give the impression that I’m okay, even if I’m not. If my deception hurts you, I’m very sorry. Just know that I try to be strong and that I do what I can to defeat the daemon. This is what it is like to deal with an invisible illness. It can be very lonely and the effects are permanent and lingering. Under my shell shows a personal hell to which I am damned until the day I die. But I try to be above it. I want my life to be more than Fibromyalgia. All my schooling and my future career makes me feel alive and I use it to show the daemon that I am stronger. The struggle is real, but I try to overcome. Fibromyalgia is real, but I rise above it. This is what it is like to have an invisible disease. This is Fibromyalgia.