Life with lupus can be challenging. With symptoms that come and go, disease flares and remissions, and the uncertainty of what each day will bring, it’s normal to experience feelings of unhappiness, frustration, anger, or sadness. It’s also normal to grieve for the loss of the life you had before lupus.

As you learn more about lupus and how to adjust and adapt to necessary life changes, feelings of unhappiness, frustration, anger and sadness will lessen.

However, there is a difference between temporary negative feelings and negative feelings that become overwhelming and long-lasting, which may signal a serious but treatable illness called clinical depression.

Symptoms of clinical depression

People are considered clinically depressed when they have a depressed or irritable mood, decreased energy, and other symptoms in the list below that last for more than a few weeks and are severe enough to disrupt daily life. Probably the best single marker for clinical depression is loss of interest in activities and responsibilities that used to be important; for example, if you find yourself saying, “I used to enjoy gardening, cooking, and going to church. I don’t feel like doing any of those things anymore.” Clinical depression may be brought about by lupus, by the various medications used to treat lupus, and/or by any of the factors and forces in a person’s life that are not related to lupus. For reasons that are not entirely understood, people with chronic disease often experience this type of depression.

If recognized and properly treated, symptoms of clinical depression can improve.

These are among the most common psychological and physical symptoms of clinical depression:

• Feelings of helplessness or hopelessness
• Sadness
• Crying (often without reason)
• Insomnia or restless sleep, or sleeping too much
• Changes in appetite leading to weight loss or weight gain
• Feelings of uneasiness, anxiety, or irritability
• Feelings of guilt or regret
• Lowered self-esteem or feelings of worthlessness
• Inability to concentrate or difficulty thinking
• Diminished memory and recall
• Indecisiveness
• Lack of interest in things formerly enjoyed
• Lack of energy
• General slowing and clouding of mental functions
• Diminished sexual interest and/or performance
• Recurrent thoughts of death or suicide

Clinical depression may not be recognized in people with lupus because its symptoms and the symptoms of active lupus can be so similar. For example, lack of energy, trouble sleeping, and diminished sexual interest can be attributed to the lupus itself. However, these are also symptoms of clinical depression.

How dealing with chronic illness can lead to depression

A variety of factors can contribute to clinical depression in people with chronic illnesses. The most common cause is the emotional drain from the stress of coping with the complications of physical illness. Add to that economic, social, and workplace concerns. Moreover, various medications used to treat lupus—especially corticosteroids—may cause clinical depression. When certain organs or organ systems are affected by lupus (such as the brain, heart, or kidneys), clinical depression may occur. A lupus flare also can trigger clinical depression, both because you feel ill, and because it may seem as though you are never going to be free of lupus.

More facts about clinical depression and lupus

• Between 15 and 60 percent of people with a chronic illness will experience clinical depression.
• Clinical depression may be a result of the ways in which lupus physically affects your body.
• Some of the medicines to treat lupus—especially corticosteroids such as prednisone (and at higher doses of 20 mg or more)—play a role in causing clinical depression.
• Clinical depression may be a result of the continuous series of emotional and psychological stressors associated with living with a chronic illness.
• Clinical depression may be a result of neurologic problems or experiences unrelated to lupus.
• Clinical depression also produces anxiety, which may aggravate physical symptoms (headache, stomach pain, etc.).
• Two common feelings associated with clinical depression are hopelessness and helplessness. People who feel hopeless believe that their distressing symptoms may never improve. People who feel helpless believe they are beyond help—that no one cares enough to help them or could succeed in helping, even if they tried.

What can you do?

Seek psychotherapy. Clinical depression generally improves with a combination of psychotherapy and medication.You should not feel embarrassed or hesitant about asking your doctor for a referral to a psychiatrist, psychologist, or therapist. Psychotherapy, under the guidance of a trained professional, can help you learn to understand your feelings, your illness, and your relationships, and to cope more effectively with stress. Cognitive behavioral therapy—a special type of psychotherapy—can be very helpful when you are living with chronic illness. Support groups led by a therapist or trained counselor, such as those organized by the Foundation's national network of chapters and affiliates, also can be instrumental in helping you deal with symptoms of clinical depression.

Take antidepressant medications. Several types of prescribed drugs can help ease the effects of clinical depression. Anti-anxiety medicines are also available to reduce worry and fearful feelings. In some people, improvements can occur in a matter of weeks once medication is started.

Find ways to reduce pain. Chronic pain can be a factor in the development of clinical depression. Besides medication (which can also play a role in clinical depression), experts often recommend non-medication ways to conquer—or at least reduce—chronic pain, such as yoga, Tai Chi, Pilates, acupuncture, biofeedback, meditation, behavioral changes, play therapy, and chiropractic care.

You may consider over-the-counter treatments for your depression and/or pain. It is important to discuss all herbs and supplements with your rheumatologist or primary care provider before trying them as certain ingredients can cause reactions with your prescribed medications.

Get more exercise. If you are physically able, take part in some sort of physical activity every day. This can be as simple as walking the dog, yard work or gardening, or window shopping at the mall.

Improve your sleep habits. Not getting enough restful sleep can cause many health problems, including symptoms of clinical depression. To improve your sleep, and, in turn, your mental well-being, try to:

• Get seven to eight hours of sleep in a 24-hour period.
• Do aerobic exercise every day, such as brisk walking—or whatever you can manage.
• Avoid caffeine, nicotine, and alcohol several hours before bedtime.
• Know which medications keep you from sleeping and take those early in the day.
• Have a good mattress, comfortable bed linens, the right room temperature, and the right amount of darkness.
• Include rest periods throughout your day when needed.

If you still aren’t getting enough sleep, find a reputable sleep center and talk to your doctor about sleep medications and/or possible physical causes for your sleeplessness.

Build a support system. Stay in touch with family members, former work buddies, or long-time friends. Make phone calls, join Facebook, try videoconferencing, or consider adding an animal companion to your family.

Change your self-talk. Feelings of anger and self-pity can bring on unproductive thoughts; for example, “It’s not fair. I haven’t done anything wrong. Why me? Or I’m too weak even to fight off this illness.” Replace negative, self-defeating inner language with truthful, productive thoughts, such as: “I feel lousy, but I have many blessings.”

You can also list the people and things in your life for which you are grateful: A loving spouse or significant other; your children, and the children of your extended family; caring relatives; good friends; a beloved pet; work or hobbies you enjoy and are able to do; a home you love; volunteer activities; fellowship at school, at a place of worship, or at a community center. Try to add to this list every day!

Discover the values of volunteerism. Volunteerism can provide real emotional benefits. Helping with a charitable cause that is meaningful to you can create social, supportive connections. Helping others can have a positive impact on your sense of well-being.

Strive to accept the new “you.” Pace yourself, and don’t feel badly about delegating some of your responsibilities. Ask for help, and accept help graciously. Finally, focus on what you have and what you can do, rather than on what you don't have and can’t do.

Just as clinical depression develops over time and not overnight, conquering clinical depression is a gradual process. However, most people with lupus find that, in time, their overall attitude and sense of well-being are greatly improved.