Of all the medical and psychological disorders affecting people worldwide, the World Health Organization has concluded that depression causes the greatest overall loss of functioning and is the leading cause of ill health and disability. As is true for many others, people with systemic lupus erythematosus (SLE) can get depressed and find that their ability to enjoy life and to function effectively is reduced by feelings, thoughts, and behaviors related to depression.
Depression can stem from a life stress, like a medical illness (for instance, lupus) or the loss of a loved one. But it can also contribute to a life stress, such as when dealing with a major depression contributes to difficulties with work, marriage, or parenting. Regardless of the reason, there are strategies that all of us—whether or not we have SLE—can use to reduce the suffering of depression and to prevent its occurrence or reoccurrence. Treatment of depression can include medications, talk therapy, and behavioral interventions that each of us can do at home. These will be discussed further, below.
Types of depression
While depression is a very common illness, there are many types of depression. It is important to make the right diagnosis, since effective treatment depends on an accurate diagnosis. While there are many subtypes of depression, there are five types that are commonly found in people with SLE.
- Major depression is a common psychiatric disorder that includes a cluster of feelings, thoughts, and behaviors which last for weeks and which cause problems. There is no medical or psychological test that definitely identifies major depression (or any other type of depression). Instead, mental health therapists diagnose depression by history and clinical symptoms. For example, most people with major depression:
- are unable to enjoy things, including activities that they used to really love.
- have depression that can last for months or even years. It may last a month or so, and then return later
- has a family history of depression, though there is no single “depression gene.” People with major depression may also have other psychiatric conditions that can worsen depression.
- have suicidal or self-destructive thoughts. This can be worrisome and scary, and even though most never hurt themselves or anyone else, it is important for anyone with suicidal thoughts to talk to a health professional about their concerns.
- Adjustment disorder is defined as the development of problematic emotional or behavioral symptoms that appear to be a psychological response to a particular stress. For example, if someone develops tremendous anxiety or sadness related to an SLE diagnosis, they might be considered to have an adjustment disorder. If the depressed mood, thoughts, and behaviors persist for months, however, the diagnosis will likely shift to being a major depression.
- Demoralization occurs when people develop a sad mood and diminished functioning because they are discouraged about their situation. Demoralization is not an official psychiatric diagnosis but does identify a large group of people with chronic illnesses like SLE. The main difference between demoralization and other psychiatric conditions is that demoralization tends to go away fairly quickly when good things happen.
- Substance-induced mood disorder refers to a cluster of symptoms that may look just like those in major depression. The difference is that while we generally don’t know why people get a major depression, we are able to identify situations when it appears that the depression is cause by substances or medications. For example, steroids like prednisone may cause mood symptoms in people with lupus. Illicit or street drugs can also cause the symptoms of depression. This appears to be most likely among drugs that initially cause a high followed by a severe low (like cocaine).
- Depression related to a medical condition refers to a depression that appears to be caused directly or physiologically by the medical illness. This would be different from an adjustment disorder or demoralization, which are seen as psychological reactions to the stress of an illness. In lupus, we sometimes recognize that depression is caused by the effects of lupus directly on the brain. This sort of physiologic reaction is not as common as the other types of depression. Generally, depression occurs in people with lupus just like it does with everyone else: because of some combination of genetics, frustration, the difficulties of life, etc. At times, however, the lupus will cause neuropsychiatric symptoms, which generally leads to treatment that focuses on the lupus more than on the depression.
We don’t fully understand why some people get a major depression and others do not. For example, someone may feel deeply discouraged and unable to function during a lupus flare. If the sad mood and inactivity get better when the lupus flare ends, we would probably say that person had been demoralized. If the symptoms were serious, lasted a few weeks, and seemed to stem from feelings of being traumatized by their illness, we might call it an adjustment disorder. If the sad feelings, thoughts, and behaviors last for weeks or months following the end of the lupus flare, we would probably consider the person to have a major depression.
Psychological reaction to lupus
Everyone deals with lupus in his or her own way, and there is no “one size fits all” view of lupus. Nevertheless, some reactions to lupus tend to be common. For example, lupus can be confusing. Unlike a broken leg, lupus symptoms can come and go without warning. This can cause the person with lupus to feel unable to plan ahead since symptoms are unpredictable. This can lead to frustration and isolation, as well as a sense that friends and loved ones may believe you aren’t trying hard enough, that you aren’t organized enough, or that you are feeling sorry for yourself. This isolation can feed into a depressive cycle, in which the person with lupus tries, fails, gets angry at herself, feels criticism from others, and gets angrier at herself (or at the other person), which can lead to guilt and further criticism. Talk therapy takes advantage of the reality that we all tend to have characteristic cycles of thoughts; that we all get stressed and anxious; and that reversing some of the cycles can help all of us feel better.
What does lupus depression look like?
Some depressed people look sad, are tearful, and ask to see the doctor. Most people aren’t so clear about it, partly because depression—like lupus itself—isn’t usually so obvious.
Depressed people can often appear tired and worried but don’t complain. Or they complain all the time, but don’t realize that being cranky, hostile and critical are symptoms of depression. Some primary symptoms of depression include:
- cancelling medical appointments, stopping medications, and not taking care of one's health
- stopping formerly enjoyable activities: exercising, socializing, working, parenting, dating, etc
- staying home and watching a lot of television
- feeling physically restless, run down or fatigued
- eating too much, or too little
- having difficulty sleeping, or sleeping too much
- feeling helpless or hopeless, and thinking there are no options
- not thinking clearly, having trouble making decisions, and feeling on is in a “lupus fog”
- complaining about almost anything (money, romance, kids, etc)
- becoming frustrated and increasingly nonfunctional
Often, these symptoms are a significant change from the person’s baseline, but sometimes they last long enough that it appears that the person has developed a “new normal.”
Treatments for depression and the stress of lupus
The most important interventions are often the ones you can do at home.
- Basics of life: Eating, moving, sleeping (and sleep hygiene) and taking rest periods. Have some sort of routine. These can all be difficult with lupus, but that means you have to do two things: make sure you do them anyway, but also adapt activities to fit the reality of your illness.
- Human contact, which is another basic. Social contacts might include family, a romantic partner, casual friends, social groups, quick phone calls, pets. As with other basics of life, you can adapt them to your reality. For example, a quick phone call every day to a friend or a few friends is often much better for your mental health than staying alone.
- Spiritual activity can be important and has two components. One is an internal sense of connection to something greater than ourselves. This might be connection to God in a traditional sense or a spiritual connection that may or may not be part of an organized religion. A second aspect of spiritual activity is being part of a group of like-minded people. This may be a traditional religious group or may be any sort of group that is trying to do something greater than the individual alone (for example, volunteers). Lupus symptoms can affect both types of spiritual activity, which can lead to a sense of spiritual isolation and depression. As with other basics of life, spiritual activities may need to be adapted to the realities of your lupus, but—if they are important to you—they should not be discontinued.
- Relaxation efforts: There are many ways that we can practice relaxation. Like an athlete training for a race, we should be training to be relaxed and rested despite our illness. Activities like warm baths, gentle walking, and gentle exercises can be vital to our health. Reading a fun book or magazine can be relaxing, as can joking around with a friend.
- Gratitude can also help with our sense of sadness, anxiety, and hopelessness. It may seem ridiculous to try to feel grateful when you aren’t feeling good. But there are always things to feel grateful for, and gratitude can be a more effective antidepressant than a medication. Like all of these efforts, gratitude takes practice. For example, do a daily kindness for others. Volunteer. Write down a daily appreciation. It is likely that you are already doing some of these things. If you do something kind for someone in your family, recognize it as helpful. Similarly, if someone does something nice for you, thank them and show that you appreciate it. Perhaps write these down in a daily book of gratitudes or a book of accomplishments. An attitude of gratitude helps us feel better. Plus, a chronic illness like lupus can make some of us feel we aren’t doing enough, or even feel worthless or helpless. Writing down some of your positive actions is a reminder that we all have a purpose.
- Self-talk: Pay attention to what you say to yourself. It is great for your mental health to be truthful, positive, reasonable, and kind when talking to yourself. It can feel so natural to say “It’s not fair!” or “What did I do wrong to get lupus?” But this sort of self-talk may lead you to feel more depressed. It may take practice, but be nice to yourself!
- Talk to others. Let your medical team know how you are feeling. Tell them about problems, such as difficulties at home, with your pharmacist, or in getting to appointments. Tactfully let your friends and loved ones know what you need. Communication is really important, even if you tend to be shy or the sort of person who wants to do things for herself or himself.
- Listen to experts - your clinicians, your peers, and yourself. It is difficult to manage a chronic illness, especially one that is as unpredictable as lupus. Having lupus can affect your self-esteem and how you see yourself. It can affect school and career choices. It can affect your relationships, your parenting, your decision about having children. It can affect your role within the family. All of these warrant special attention to help you lead a full and happy life in the midst of a chronic illness.
Medications for depression
Medications are often used for depression in lupus. There are many antidepressant medications and several categories of antidepressants. All are, however, similar. They all take several weeks to begin working, are safe, tend not to interact with other medications, and are commonly prescribed. Most are associated with some mild weight gain and can cause sexual dysfunction, including difficulty becoming aroused and delayed orgasm.
- The most commonly used antidepressants belong to a category called Selective Serotonin Reuptake Inhibitor (SSRI’s). The many SSRI’s include citalopram (Celexa), fluoxetine (Prozac), and sertraline (Zoloft).
- Serotonin-norepinephrine reuptake Inhibitor (SNRI’s) are similar to SSRI’s. SNRI’s include duloxetine (Cymbalta) and venlafaxine (Effexor). These medications may help depression but are unusual in that can help with certain types of pain, especially neuropathic pain, which can be felt as an uncomfortable tingling in hands and feet.
Medications from two other categories are also often used:
- Mirtazapine (Remeron) is similar to the above medications, except that it is sedating, and is often used at night for people with depression with insomnia.
- Buproprion (Wellbutrin) tends to cause people to have a bit more energy (or feel “activated”), so it is used in the morning. Buproprion is used particularly because it does not cause the sexual side effects that are fairly common with all of the other antidepressant medications, and it tends not to cause weight gain.
When you go off these medications, your clinician will likely ask you to taper them over a period of weeks. A slow taper is especially important for two of the antidepressants: paroxetine (Paxil) and venlafaxine (Effexor). If these are tapered quickly, or if you just stop the medication, you are likely to have withdrawal effects that can feel like you have the flu. Go off these two antidepressants slowly!
Psychotherapy for depression
Many people feel better after talking to friends, loved ones, lupus groups, or religious leaders, and—as described above—almost everyone feels better by being in a social network, even if many of the daily contacts are by phone.
Other people find it very helpful to do some sort of psychotherapy with a therapist who is not personally involved in your situation. Since SLE affects your relationship to other people, it may also be helpful to get into therapy focused on couples or families. These meetings vary significantly, and it may be useful to talk to someone within your doctor’s office or clinic about how best to find an individual therapist. Finding the right therapist will probably involve some “shopping around,” since you will want to find a situation that feels comfortable, is convenient, and affordable.
At HSS, we offer LupusLine® and Charla de Lupus/Lupus Chat® or LANtern® Lupus Asian Network. Learn more about the HSS SLE Workshop, a free support and education group held monthly for people with lupus and their families and friends.
John Barnhill, MD
Chief of Psychiatry, Hospital for Special Surgery
Professor of Clinical Psychiatry, Weill Cornell Medical College