More than meets the eye

Disease like mine is not fun. It is not pleasant. It is in no way merciful. At some times it is nearly invisible, at others it is impossible to ignore. There is a myriad of symptoms, targets, treatments, and side affects attached to this disease, thus making it more or less visible depending on the individual. For extremely advanced cases physical deformity (such as crooked fingers or wheelchair/walker use) is practically guaranteed.

This disease attacks primarily the joints, so the ultimate deterioration and disfigurement is (sadly) expected and readily understood. If you walk around stooped over, people are bound to be compliant and sympathetic. They understand, because they can see the issue. They are willing to trust in the fact that you may need them to hold open a door, or step aside to let you pass instead of brushing by without a second thought. They want to care. People believe what they can see, and when they see disability they will accommodate. While yes, it is wonderful that they are willing to help those struggling with such a physically tormenting disease, what happens to the rest of us? I am not restricted to a wheelchair or forced to use a walker, and I don’t have fingers that are permanently zigzagged. Don’t get me wrong I am truly grateful that my disease has not yet progressed to that point, but that doesn’t mean I am healthy. As I’ve said before my wrist braces are the only visual sign of my problems, and for all the unsuspecting observer knows I may have simply fallen and sprained my wrists. I don’t look sick, and therefore everyone assumes I am okay.

With me there is more than meets the eye. I want to come across as a beautiful person, but all too often my disease interferes. There are three main silent struggles—other than the pain—that I am always dealing with.    

1)  Fear

2)  Anticipation

3)  Frustration

I am willing to admit that I am scared. I am scared of my future, and scared for my future. I have so many plans, such grand aspirations and hopes for what my future will bring. At the same time I am so afraid. I want to go into scientific research, but what happens when my fingers become too deformed to perform experiments? What happens when my fingers are no longer nimble enough to keep careful notes or execute intricate investigations? I am afraid that I will be forced to follow a different career path before I can even begin down the one I have chosen now. What about my relationships? There are times when I just can’t go out—be it with friends or a significant other—and times when I will have to bail last minute.  I will always have to be asking for help. Sometimes I shouldn’t be driving, a lot of times I can’t do small tasks like carry groceries and open jars. How much patience will the people around me have? How long before they give up on wanting to be around me? What about parenthood? I am doing good to take care of myself—how am I supposed to take care of the four children that I want to have? I have always imagined having a big family, but I am afraid that my disease will keep me from having it. Everything could be gone; every hope dashed every dream crushed. I am scared that disease will change my future in a way that I am not okay with.

Anticipation is brutal. Yes, there tends to be patterns with disease, but extremely broad ones. One pattern for example is that every several months there is a new affected part of my body. That’s a pattern yes. But I don’t know where the target is, and I don’t know how badly it will be affected. What about what’s going on inside of me? My disease is systemic because it’s autoimmune. This means my entire body is susceptible—organs included. I am just waiting for a blood test to show inflammation of the lung or kidney or liver or something. Eventually it will happen, the question is when. It’s terrible to have to live right on the edge, never knowing what bad thing will happen next. Another thing I hate waiting for: a bout of fatigue. Unless you have experienced it yourself, you cannot possibly imagine what it’s like to live with extreme fatigue. On any given morning I may wake up and have absolutely NO energy. This is not as simple as being completely exhausted—sleep can cure that. Nothing can cure this kind of fatigue. No amount of caffeine or sleep or loud noises or bright light will wake me up when I am under this cursed spell. Sometimes when I go to bed I close my eyes and wish on imaginary shooting stars that I will wake up and just be in pain. Pain I can handle—I have learned how to function with it and live around it. But please don’t make me fatigued. And I am left to anticipate its imminent arrival.

And of course, the silent frustrations. The secret blame, the hidden shame, the annoyances, the anger, the constant irritation. I know that to an extent I cannot help the fact that I have this disease. There is no way I could have known this was going to be part of my life and no way I could have prevented it. That doesn’t mean I don’t wish I could have. Frustration and disease come hand-in-hand. When I can’t button my pants in the morning without extreme pain, what else can I do but curl up and cry? When I have to ask my mom to open a water bottle because I can’t, how am I not supposed to be embarrassed? When the most menial tasks become menacing obstacles it is ridiculously easy to get infuriated. I don’t just get frustrated with myself though; half of it is aimed outward. Angry at the world some call it. This world is not designed for people like me—people with physical challenges. Childproof cupboards = Maggie-proof. Childproof caps on my own medications = Maggie-proof. Stairs = hate. Having to sit on the floor = hate. It’s incredibly frustrating for me to live in a place designed for the mainstream population. People like me simply don’t fit in, and that’s a frustration that will never change.

Many people know of my disease. They have at least a vague idea of what it is, and what it does. They ask me those boring questions, and I give them those boring answers. But I have so much more going on underneath that they can’t and will never see. Secret struggles that make every day even harder, and every light shine a little dimmer. I may not look sick, but I am. And on those rare days where I genuinely do seem to be doing well, pain-wise I probably am. But that doesn’t mean I am not fighting a different battle. There are a dozen battles that I am in every single day, and winning the battle on pain does not mean I have won the war—there is always a battle to be fought. After all, this is not a war of definite victory. This is a war of attrition, so my armor is always on. A warrior they call me.