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Lupus Coping Corner

"How can I explain lupus fatigue to my family and friends?"

Jessica Rowshandel, M.S.W.
Amy Caron
Project Director
Lupus Research Institute

Dear Jessica,

I need help explaining what lupus fatigue feels like to my family and friends. Sometimes they think I’m just being lazy. Do you have any suggestions?

Jill
NYC


Dear Jill,

So many of our patients have fatigue, and like you, they say that since they don’t usually look sick, it’s hard for friends and family members to really “get” just how wiped out they are.

To make matters worse, lupus fatigue is not only unpredictable but can be maddeningly hard to describe. Some people think of fatigue as simple tiredness, when that’s not it at all, as you know. How many times have you heard, “Just push yourself a little harder?”

When I ask our patients to explain what lupus fatigue feels like, they make comparisons. “Fatigue feels like a heavy stack of metal sheets sitting on my chest –-hundreds of pounds worth,” said a young woman at a recent support group. For her, fatigue is an extremely heavy force that she cannot move, no matter how hard she tries.

Others say that the fatigue of lupus feels like they have been drained of all energy…as if something vital is suddenly missing. All the light bulbs inside have burned out at once. A bundle of balloons has popped, and suddenly fallen to the ground. “I feel limp like a rag doll or a puppet whose strings have been cut,” one support group participant said.

There is one way of describing lupus fatigue that I often share because it’s so visually clear and concrete. It’s called the Spoon Theory, and it explains how a person with lupus fatigue must be choosy about what he or she does since on some days, there are very few rations of energy (spoons) to go around. Read the theory here. You might want to consider trying it the next time you are telling a friend how you feel.

Regardless of how you may describe your fatigue, one thing remains constant: it’s not about lack of effort. “No matter how hard I try, I just cannot get out of bed, and I really want to,” is something I often hear. It’s an important thing to note. You are definitely not being lazy.

Do you have ways of describing fatigue, or “comparisons,” that you think others might like to hear about? Tell us about them in the comments section below.


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Lupus Coping Corner

Disclaimer: The information provided by the S.L.E Lupus Foundation is for educational purposes only and should not be used for diagnosing or treating a medical or mental illness, nor be a substitute for professional care. Consult your healthcare provider if you have or suspect you may have a medical or mental health problem.

Amy Caron, MPH is a lupus patient and Project Director of the Lupus Research Institute provider education initiative.  She is not a physician or counselor.  The suggestions shared in this column are strictly opinions from the perspective of a lay person with lupus. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care.

The S.L.E. Lupus Foundation does not provide any direct medical or psychological services nor recommend or endorse any particular treatment or therapy. The S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.