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 W.

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

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

4. “Listen to your body.” —Lesley W.

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 W.

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

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

8. “Know your limits.” —Lucy P.

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 F.

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

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 K.

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

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