I do a fairly good impression of being a healthy, introverted, if somewhat lazy, 20-something. There are only three things wrong with that impression. I am not healthy, I am not an introvert, and I am not lazy.
When I tell my healthy friends I have energy-related health problems that prevent me from doing something I get a handful of standard responses. “What do you have?” is the most common question. To which I usually reply that I have been repeated diagnosed by my many doctors with either, “Hmm, that’s interesting,” or “I haven’t seen anything like it before,” often followed by a joke about the uselessness of the diagnosis. The most common statement is, “You don’t look sick.” My glib response follows along the lines of “Thank you. I try to keep it that way.” If they ask why I won’t do something, I tell the spoon story by Christine Miserandino. She talks about Lupus, something I don’t have, but the principle of watching an internal energy meter is the same.
I am a sick extrovert who knows the drawbacks of acting like one. I love going places and doing things with friends. I don’t like getting somewhere and not having the energy to carry my end of a conversation, let alone something heavier. I love wearing fun clothes. I don’t like the constant small drain of having to think about sitting in a pencil skirt, making sure a scoop neck sits right, or the many other little things that need to be done to wear something more complicated that a t-shirt and jeans. I love fairs and talking to new people I may never see again. I don’t like barely being able to drag myself out of bed for the week or more afterward.
I am often assumed to be lazy or to lack goals or determination. I am not lazy; I choose to do what I can and not wear myself out. I will let others do things I physically could accomplish. Housekeeping is not as important as eating. I will set up situations so I will not be asked to volunteer for extra work or will find a way to do the same thing with half the effort. I plan out every move in advance from the tiny stuff like taking a shower, to the job, education, accolades, and health I would like in five years (although it may take me closer to seven years). I have to make sure each step burns as little energy for as much benefit as possible. I am determined. Determination is sometimes all that gets me through a lesson on a bad week. Determination is that I show up to the few commitments I do make. Determination says I will take the next step in the plan even if that next step is tiny. I may be going so slow no one can see progress, but I won’t quit.
With the initial impression broken of being healthy, introverted, and lazy; I am sick, but not fragile. I do what I can because I am motivated and will not stop.
Who are you and what do people see?