2019 Walk to End Lupus Now, DC

Craven a Cure

Last year I was overwhelmed by the outpouring of support from my family and friends in my fight against Lupus. Your compassion is unmatched and your desire to empathize amazes me. I often found myself at a loss for words when faced with the question: what is it really like to have lupus?

Recently, I learned that there is a common metaphor the Invisible Illness Community relies on to answer this question. I hope you’ll indulge me while I share it with you.

The next time you walk into your kitchen and open up your silverware drawer, take a look at the spoons, pretty innocuous, commonplace objects. How many are there? 8? 12? Imagine you have lupus and that each one of your daily activities costs one spoon to complete.

I’ve played this game with a number of friends, going through a day in the life of someone with lupus. And so we talk about the things you need to accomplish today and how one is going to allocate her spoons to get everything done. Usually, friends tell me that the first activity of the day that costs a spoon involves “going to work” or “going to the gym.” And this is where things get interesting.

Now that you have lupus, ordinary things, like getting out of bed in the morning, or taking a shower, things that one completes without a second thought, use up a spoon. And suddenly, spoons are precious. You are constantly thinking about how to prioritize the day given the finite number of spoons.

And yes, you could borrow against tomorrow’s spoons, but you will pay for it, when just brushing your teeth the next day costs a spoon. But what if tomorrow is the day you catch a cold? What if you are going to need those spoons to fight off an infection your body no longer has the resources to combat?

So typically, we get to the end of the fictional day, home from work. For all intents and purposes it’s been an ordinary day, and there’s one spoon left. Do you make dinner, knowing that you probably won’t be able to do the dishes? Do you do laundry or clean the apartment? Do you meet a friend for drinks, someone who you’ve cancelled on several times before because you weren't feeling well?

All this to say: living with lupus is about making choices. And I’m so grateful for the patience you’ve shown as I’ve learned how to make these choices, and never for one second have I regretted spending a spoon on any of you.

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