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.
I had always been an athletic, healthy person, but in my late 30s my body
started sending signals that something was wrong. I was tired all the time. I
had no energy. I even started losing my hair.
When I went to my doctor, the staff ran blood tests, but nothing ever
pointed to a specific diagnosis. I lost weight. I couldn't keep food
down. I developed a butterfly-shaped rash on my face. I saw other doctors; they
thought it was all in my head, and, for a time, they didn't believe I was
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.