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Good Days…Bad Days With Maureen Pratt

When I was newly diagnosed with lupus, people would often ask me, “What symptoms do you have?’ When I’d say, “Well, I get fatigued,” they might reply, “Oh, but, you take naps, so you must feel better after that,” or, “I get fatigued, too, but I don’t have lupus.”

I quickly learned that, if I wanted people to have a better idea of what lupus felt like, I had to become more specific about the words and phrases I used to describe symptoms. So, I started to come up with alternatives – a kind of “health condition thesaurus,” that would clarify things like fatigue.

Even in everyday conversation, the same word might not mean the same thing to you or me as it does to someone else. Often, our use of a basic word is tied to deeper feelings, emotions, and spirit. Greater meaning between people could come about if we were more specific.

Thus, this first “Word Play” blog, and today’s word, “fatigue.”

As I explained, early on in my life with lupus, I learned that saying, “I’m tired (or fatigued) just wasn’t enough to help people understand how I really felt. For example, if I’d been invited out, but was suddenly too tired to go, “too tired” might mean to some people that I was trying to avoid them, or was just being lazy. Oh, how I wanted them to truly understand! So, I began word-by-word to be more descriptive and, years later, I still do!

Sometimes, to describe “tired,” I use phrases or descriptive examples. Lupus fatigue can be so bone-numbingly oppressive that putting one thought together with another is as exhausting as thinking of venturing outside. It’s much like feeling as if you have had the flu…for a month.

Sometimes, lupus fatigue is so heavy that I get too tired to fall asleep.

Other times, one word suffices to describe “tired.” There’ s “done,” “cooked,” “droopy,” and “wilted.” In French, there’s an expression that fits me sometimes, “crevee.” As in “pneu creve,” or, “flat tire (of an automobile tire)” – I really like this one.

Now, when I describe what my fatigue feels like, people can understand, and this understanding is a boon to me and many others.

When we individually understand and articulate what’s going on with us, we become better reporters of our condition and better able to differentiate between the distinct kinds of “tired” we enconter in life and with our illnesses.

When friends understand how we’re really feeling, they can better know how to give us the support we need.

When our medical team understands more specifically what we mean when we say “fatigue,” they can better assess our health issues and possible solutions.

It’s all good – and it begins with that handy helper – a health condition thesaurus.

Now, how do you say “fatigue?”

Blessings for the day!
Maureen

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