13 People With Lupus Explain What It Feels Like

Lupus is a chronic autoimmune disease that affects 1.5 million Americans alone. Symptoms generally include fatigue, skin rashes, swollen and painful joints, unusual hair loss and a high fever. Nine out of 10 adults with lupus are women aged 15-44, and it’s more prevalent among African American and Latina women. Symptoms can strike at any time, and because of the inconsistencies, the disease is difficult to diagnose — and even harder to understand if you don’t have it.

The Mighty teamed up with the S.L.E. Lupus Foundation to ask their community how they would explain life with the disease to someone who is unfamiliar with it. Here’s what they had to say:

1. “It’s like having the flu without having the flu. I feel sick, exhausted, weak and in pain for 24 hours or weeks. Then it goes away and will hit again whenever it feels like it. It takes so much energy to keep going from day to day. There is a lot of praying, crying and anger due to this disease. I appreciate when I have my good days, and fight through the bad ones because I refuse to give in or give up.” —Neeco Massengale

Young woman holding a thermometer in her mouth

2. “It feels like some vague but powerful evil is coursing through my lymphatic and circulatory systems, because it is.” —Trey Turnbull

3. “I feel like a 90-year-old in a 27-year-old body.” —Alyssa Jones

Old woman looking in mirror at younger self

4. “It feels like you ingested a toxic poison…and the sick feeling doesn’t go away…ever!” —Dawn Gursin

5. “Two words: It sucks!” —Sharon Antonellis

6. “Imagine your worst hangover. Then imagine waking up that way every day, sans party the night before.” — Carie Behounek Sherman

Woman with hangover in bed

7. “An exhaustive fight every day.” —Angela Payne Dawson

8. “My immune system attacks itself.” —JoAnna Johnson

9. “It will test every bit of your patience, your mind, body, soul and faith along with the people close to you.” —Danielle Schiren

10. “It’s a bully!” —Mary Copeland


11. “Do you have any allergies?… Well, imagine that nasty inflammation happening in your kidneys, your lungs, your joints, blood vessels… because you’re now allergic to yourself!” — Candis Stewart

12. “It’s like living with a ticking time bomb; you never know where it will strike next.” — Linda Brown

13. “I just ask them to Google the Spoon Theory. This has helped many of my family and friends to go halfway to understanding.” — Lesley Watkins

Metal spoon on table

If you have lupus, how would you describe it to others? Let us know in the comments below.

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