It’s hard for people who know me to believe I’m chronically ill. Yep, I said it… I’m chronically ill. I live every one of my days with a disease and I will continue doing so every day for the rest of my life, unless by some miracle, a cure is found. Just like normal people; I go to work, I learn new things, I cook, I clean, I go to the gym and I spend time with my loved ones. If I must say so myself… I do a damn good job hiding who I really am. I am a sick girl.
To be honest, there are moments when I even forget I’m sick. There are actually split seconds when I’m overwhelmed with some emotion other than pain — and for an instant, I actually feel like a normal person again. During these brief moments, I feel like the person I was six years ago before this disease took over every inch of my body. Those were the good old days. I was naive and unappreciative of all the things normal people do… I didn’t realize that one day soon I’d miss being able to button my clothing, open jars, brush my teeth and blow dry my hair effortlessly. I didn’t know that one day I might wake up not being able to move, let alone get out of bed. And I sure as hell didn’t know it was possible to be this tired all the time. Even after all the sleep I’ve been getting.
It’s tough. It’s tough knowing that at 29 years old, I can’t do everything I want to anymore. I have to set limits for myself. I have to choose my battles and prioritize the things I want to do. I’ve always just “done it all” without thinking twice. Not anymore.
It’s especially tough being a sick girl who doesn’t look sick. Or maybe I should rephrase that. It’s good that I don’t look sick because I don’t want anyone’s pity. But it would be nice to get a seat on the subway once in a while like when my hips are burning and aching. It’d be nice to take the elevator with all the moms and strollers at the mall because I can barely lift my legs enough to walk. But it’s somewhat impossible to do these things without getting an occasional stink face from some judgemental frump. You know the look… It goes something like “what’s that 20-something girl doing sitting down? She should give up her seat to the older man”. I could just scream at those people who dish out their disapproving looks, “I’m a SICK GIRL”, I’d tell them. But instead, I just shrug, stand up and let the healthy 50-year-old man sit down in my place. Does this mean I’m hiding? Or do I simply not want to deal with the hassle of explaining my situation?
Despite all the angst and frustration that stems from living with a chronic illness, I try my hardest to stay as upbeat as possible. And at the end of the day, it truly is amazing what forcing yourself to smile can do for your day. So… Maybe it’s not hiding after all. Maybe pretending I’m not a sick girl is just my way of coping. How do you cope with being chronically ill?