I have lupus. I get lots of skepticism and lots of unsolicited advice. Here is a small list of things people with invisible illness (like me) wish healthy people would not say.
- But you don’t look sick. To me this is like judging a book by its cover.
- You would feel better if you ate healthier. What time will you be serving me that meal you are preparing? Sometimes I’m just too exhausted to fix a meal.
- Everyone gets tired. Yes, but your kind of tired is not like mine. If I ignore my kind of tired, I will most likely pay for it with a flare up.
- I wish I had time to take a nap. Napping is not something I want to do, it is something I need to do.
- You should get more exercise. I’m doing the best I can. My body hurts even without exercise. Exercise won’t fix my immune system.
- Have you tried…? Yes, I probably have.
- You should stop taking so many medications, it’s not good for you. I don’t like taking all of these, but I know what happens when I don’t. The medicine helps me get through my days, feeling somewhat normal.
- It could be worse. Yes, I know. Right now handling this is pretty hard though.
Lupus can affect the body in many invisible ways. Headaches, kidney problems, blood issues, heart and lung issues, brain and spinal cord issues. A person with lupus or any other invisible illness is not whining, or attention seeking, or complaining just to complain. They are not making things up. Let them know you believe them. Learn what you can about their illness to better understand it. Be aware that not everyone with that illness has the same symptoms, try not to generalize. Be understanding when they cancel at the last-minute and try not to make them feel guilty when they don’t answer the phone or text. They really are trying their best.
Thank you for taking the time to read this. I (we) appreciate it.
Beaucoup d’amour, mes amis! (Much love my friends!)