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23 Feb

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to.The healthy have the luxury of a life without choices, a gift most people take for granted.She then asked me out of the blue what it felt like to have Lupus and be sick.I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus.Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”.I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous.

If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

So for my explanation, I used spoons to convey this point.

I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. How do I answer a question I never was able to answer for myself?

How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity.