Lupus Etiquette Notes 1 to 5

Lupus etiquette for people who do not have lupus part 1. Being responsible, helpful not hurtful. 1 Do not offer unsolicited advice advice about my medication, eating, exercise or other aspect of lupus. You may mean well, but giving advice about someone’s personal habits, especially when it is not asked for, isn’t very nice. Besides, many popularly held beliefs about lupus “you should just get more exercise” “you should just eat properly”) are out of date or just plain wrong. 2 Do realize and appreciate that lupus, whether discoid or systemic, is hard work. Lupus management is a full time job that I didn't apply fore, didn't wants and can't quit. It involves thinking about what, when and how much medication I take, supplements I take, while also factoring in nutrition, movement, exercise, stress, photosensitivity, sleep quality and quantity, medication reactions, food allergy and sensitivity and so much more each and every day. 3 Do not tell me horror stories about your grandmother or other people with lupus you have heard about. Lupus is challenging enough, and negative stories like these are not reassuring. Besides we now know that with good lupus management, odds are very good you can live a long, relatively healthy and happy life with lupus. 4 Do offer to join me in making healthy lifestyle changes. Not having to be alone with efforts to change like starting an exercise program, eating whole foods, staying involved in social activities, is one of the most powerful ways that you can be helpful. After all healthy lifestyle changes can benefit everyone. 5 Do not look so horrified when I have conspicuous rashes and sores, patches of missing hair, put on excessive sunscreen or sun protective clothing, have to take medication including needles in public or when I can barely move. It is not a lot of fun for me either. Checking rashes and taking medications are things I must do to manage lupus well. If I have to hide while I do so, it makes it harder for me.