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.
Where the Feelings Come From
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.
Mental Effects of the Lupus Disease Process
Sometimes, the mental and emotional effects of lupus can be related to the disease process itself or medications used to treat it. Common problems that may be associated with the disease include:
Cognitive dysfunction. Many people with lupus experience a variety of related problems including forgetfulness or difficulty thinking. They may describe these problems as feeling “fuzzy-headed” or being in a “lupus fog.” These problems often coincide with periods of increased disease activity, or flares. But cognitive problems can also be symptoms of depression.
Depression and anxiety. These can occur as a psychological reaction to having lupus or a side effect of treatment. They may also occur as a direct result of the disease process. Often it is difficult for doctors to sort out the actual cause.
Mood swings and personality changes. People with lupus may experience unpredictable changes in moods and personality traits. This can include feelings of anger and irritability. These may be related to the disease process or, in some cases, the use of corticosteroid medications.
Getting Help for the Emotional Effects of Lupus
If you are experiencing any of these problems, it’s important to discuss them with your doctor. Your doctor can help you find solutions. These may include a change in medication to control your lupus. Or, the doctor may add medications to treat problems like anxiety and depression.
Your doctor may also refer you to a mental health professional, who will be able to help you identify additional ways to cope with lupus.
How You Can Help Yourself
There are steps you can take to cope better with lupus, including:
Educating yourself -- and others. Learn as much as you can about the disease and its treatment. Share information with friends and family members so they will better understand the disease and how it affects you. Their support is important to success in managing the illness.
Practicing healthy lifestyle habits. Exercise regularly; eat a healthy, balanced diet; get enough rest; and avoid alcoholic beverages, particularly if you are depressed. Alcohol is a natural depressant. It can markedly increase the severity of depression and its symptoms.
Learning stress-management techniques. Living with a chronic disease is stressful. A mental health professional can teach you techniques, such as progressive muscle relaxation, guided imagery, and meditation, that you can use regularly to cope with the stress of lupus. Other stress relievers you can try include listening to soothing music, taking a warm bath or a walk, or doing some gentle exercises.
Doing activities you enjoy. Lupus may limit some activities. So it’s important to find things you enjoy doing and take time to do them. These activities can be as simple as reading a good book or doing thoughtful things for others.
Seeking support. When you are feeling down, talk with a trusted friend, clergy member, or counselor. Consider joining a support group. To find a group for lupus patients near you, speak with your doctor or counselor or check with the Arthritis Foundation or Lupus Foundation of America.
Appreciating yourself. Although you have lupus, you likely have many other things, such as pretty eyes, a friendly smile, musical talent, or a flare for Cajun cooking. Don’t make lupus the focus of your life. Focus on your talents, abilities, and strengths.