Everyone has it. Sometimes people don’t even know when they say it. Other times it just slips out. Or the worst of all… they really mean it in a mean way. Let’s just say being chronically ill leads to a lot of discoveries. Foot In Mouth Disease being one of the most common.
I’m not just talking about the general “but you don’t look sick” or “you’re too young” stuff. No, I can handle that. I hear it ALL the time. Every person I meet who asks me about my health and desires an honest answer gives me those exact phrases. One of the first things I learned to cope with was how to respond to them politely. Over the years I have been conditioned to people’s ignorance, over-reaction and acceptance. Dealing with the simple phrases is a walk in the park for me.
Here is what I am talking about. A quote from my sister the other day “Well at least I don’t have Lupus so I can actually drive well and don’t need some one else in the car with me to be my second pair of eyes.” Yeah burn. The whole conversation in the car was one long put down. Classic case of FIMD. She may not have realized how powerful certain words strung together can be. However, based on how the conversation was going in the car on that particular day… I’m sure she knew exactly what she was saying.
Just today even, my Dad and I were in conversation about piano. He said “If you weren’t ill you would be an excellent piano player. But right now you aren’t. You can’t play very well because Lupus slows you down. I mean, you don’t play nearly as good as some of the other piano players your age.” First off I wanted to slap my Dad clear across the face in a very dramatic way. Second, I wanted to flip out on him. For crying out loud, I’m playing piano pieces with four clefs read at the same time and intricacies in every measure. I am playing far better now than I did two, four, six or even eight years ago. Every single day I practice for a half hour or maybe even an hour. My cool and calm response “Dad I enjoy piano and have my own set of expectations. I may never be “excellent” enough for your ears but to my own ears I am excellent. Not everyone can play as well as I do at this age. There are always going to be people who are better than me or worse than me. What really matters is I have a passion for piano and work with my talents.” Once again, a classic example of FIMD.
Now comes the inevitable question: “How much does Lupus really affect your abilities?” Hearing snarky comments from my own family about my apparent lack of abilities is not motivating. I don’t lack ability. Lupus does not control my talents, nor does it control me. Honestly I don’t understand why my family blames everything on my illness. I can’t play piano like a professional yet therefore “it’s all lupus’s fault.” Driving isn’t my expertise and I feel more comfortable with another person in the car “it’s all lupus’s fault.” You can’t blame everything on Lupus. Regardless of illness I feel I would still be at the exact same level of piano playing I am today. I work hard for what I want and I want to be spectacular in my eyes at piano. I’ve already achieved excellence but I will never be perfect. As for driving… I didn’t like driving before Lupus and with Lupus I still don’t like driving. Not much to say there.
Foot In Mouth Disease is a chronic illness everyone has. Sometimes FIMD sufferers can really challenge my cooling system. Respectfully and calmly replying to their asinine remarks without further fueling the ignorance/knowledgeable rage. I haven’t learned to cope with this yet. But in the grand scheme, nothing, not off putting remarks or Lupus can hold back my desire to use my abilities to their best in life.