Living with lupus can have a profound effect on a person’s mental and emotional well-being. You may have recently been diagnosed with lupus, or you may have been living with it for years. Either way, you are likely to have experienced mental and physical problems such as difficulty concentrating or sleeping. You are also likely to have felt emotions such as grief, fear, anxiety, and depression.
These feelings are common. Understanding where they come from can help you develop techniques for coping with them.
Amanda Greene, 43, stashes a tube of sunscreen in her purse and car so that she can reapply it throughout the day -- as frequently as some women touch up their makeup. Using sun protection is second nature for Greene, who was diagnosed with lupus (SLE) at 15 and is photosensitive.
"I use it from head to toe 365 days a year, whether it's gray or sunny," says Greene, a Los Angeles lupus advocate. "Some women reapply lipstick -- I reapply my SPF. It's part of living with lupus."
Women who have lupus...
The feelings associated with lupus can have multiple causes, including:
Outward effects of the disease or its treatment. Visible problems such as a facial rash or weight gain from corticosteroids used to treat lupus can affect your physical appearance and self-esteem.
Work and activity limitations. Pain, fatigue, and other symptoms can make it difficult to do things you once enjoyed. The disease or its treatment may make it necessary to cut back at work or even leave your job completely. This can affect the pleasure you get from your job, your sense of purpose, and your income.
Pain, fatigue, and other physical symptoms. Simply living with pain and other symptoms every day can wear you down. Emotionally, this can lead to frustration and feelings of hopelessness.
Social isolation. When you feel bad or use all of your energy just to get through the day, social activities may be among the first things to go. Concerns about changes in your appearance may also cause you to withdraw.
Uncertainty about the future. Having a chronic, unpredictable disease can cause uncertainty and anxiety. You may wonder how the disease will progress, whether you will be able to stay independent, or how you will manage physically and financially.
Difficulty with family relationships. Having a chronic illness like lupus may make it difficult to take care of your home or family the way you would like to or feel you should. Because the disease may come and go and often shows no outward signs, your family may not understand why you can’t do the things you used to do. They may even question whether your disease is all in your head.