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The 12 Best Pieces of Non-Medical Advice People With Lupus Have Received

Lupus, or systemic lupus erythematosus (S.L.E.), is a chronic autoimmune disease that affects an estimated 1.5 million Americans and millions more worldwide.

Symptoms of lupus vary greatly, but they generally include fatigue, skin rashes, swollen and painful joints, unusual hair loss and a high fever. Some people with lupus develop kidney problems and others may be susceptible to premature heart disease, but there’s no single laboratory test that can determine if a person has lupus. Because symptoms come and go, it often takes years for a diagnosis to be made, and when one comes it’s joined with tons of medical jargon, stats and prescription instructions.

The Mighty teamed up with the S.L.E. Lupus Foundation to ask their community about the best non-medical advice about lupus they’ve received. Here’s what they had to say:

1. “Don’t fight the tiredness!” —Lisa Walker

african woman with laptop at office

2. “Get involved in a support group.” —Tonya Brown

3. “Never feel bad for saying ‘no’ to something.” —Meagan Burks


4. “Listen to your body.” —Lesley Watkins

5. “With lupus you ‘don’t look sick’ so if a doctor doesn’t listen to your complaints or take you seriously, get another opinion. It’s your body and you know when something is wrong with it! Don’t let the doctors brush your symptoms off and make you feel like a hypochondriac.” —Tammy Wendt

Doctor scolding

6. “It’s good to take naps.” —Pamela Rich

7. “Do what you can when you can.” —Vanessa Johnson


8. “Know your limits.” —Lucy Piccoletti

9. “You are not your disease. Do not allow it to overcome you or define who you are as a person. You are more than just your illness.” —Mary Rebecca Frazier

High angle view of a young woman lying down on a wooden platform

10. “Do not be afraid to change plans if you just can’t do it.” —Jen Laura Lopez

Young businesswoman using cell phone against cloudy sky

11. “My favorite advice has been, ‘Eat pure food, drink pure water, get enough rest, take gentle exercise, and most importantly keep a happy mind.’ This advice reminds me to be gentle, compassionate and wise towards myself.” —Chogma Kelsang

12. “Be kind to yourself and rest when your body is screaming out for some.” —Victoria Sinclair


For more information, visit S.L.E. Lupus Foundation’s website and Facebook page.

All images via of ThinkStock