Make sure you have the right doctors and keep up with them. Lupus patients generally have a variety of doctors, including a rheumatologist (for joints). It is essential that you keep your doctors well informed. If you don’t get along well with one doctor, then find one that you do get along with.
Learn as much as you can about Lupus. Ask your doctor lots of questions and read up about it online. A good website to start is the Lupus Foundation of America, as listed below.
Take care of yourself. Get enough sleep. Drink enough. Eat enough. Remember to take some time to relax.
Pay attention to your body. Learn to recognize signs of flare ups. If you start to feel ill, try to figure out what is causing it (sun? stress? working too hard?) so that you can avoid it. Also, if you recognize that you are having a flare, you can tell your doctor so that it gets under control before it gets out of hand.
Talk to your doctor. If you have questions or concerns, call your doctor. Don’t worry about “bothering them over something minor”, you have a serious illness and it’s their job to help you with your health. It is better to ask too often than not enough.
Coping with lupus may require a lifestyle change. The majority of lupus patients are photosensitive (sensitive to UV or sunlight). Wear sunscreen and avoid excessive sun exposure.
Keep in mind that stress can cause flare ups. Try to take things one step at a time and not overdo it.
Be aware that having lupus can be difficult for family and friends as well. They may have a difficult time understanding the disease and coping with the fact that you have it. Try to keep them well informed.
Lupus is difficult to see. It is common that people have a hard time understanding that you are ill. Try to educate them about lupus. Send them a link to a lupus website or give them a book about lupus to read.
Most importantly, it can be difficult for YOU to deal with. If you are having difficulty coping, you may want to consider seeing a psychiatrist, joining a support group (internet based or in real life), and talking to your doctor about it.
Set boundaries with family and friends about who they talk about it with. If you don’t want them telling everyone about it, tell them so. It is normal for a person to want to keep his/her medical information private.