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Systematic Lupus Erythematosus (SLE) and Depression 101

Adapted from a presentation at the SLE Workshop at Hospital for Special Surgery by Dr. John Barnhill and Su Jin Kim. April 26, 2012.


John Barnhill, MD, a psychiatrist and Su Jin Kim, LCSW, a social work manager, engaged in an interdisciplinary talk about depression and its connection to lupus to the SLE Workshop, providing unique perspectives of two professionals from two different disciplines.

Dr. Barnhill stressed that depression is not just feeling sad. Rather, it’s a disorder of feelings, thoughts, and behaviors.

Someone experiencing depressive feelings may be unable to enjoy things. They may feel physically restless, run down and fatigued, he explained. An individual experiencing depressive thoughts may be thinking their situation is helpless, they may not believe there is any hope left for them, and they could be thinking of harming themselves.

Depressive behaviors include eating too much or too little, having difficulty sleeping or sleeping too much and not partaking in activities that an individual once found pleasure in. Additionally, a depressed person may be acting destructively by engaging in risky behaviors and may be thinking of ways to hurt themselves.

Types of Depression

Major depression is a depression that is characterized by an all-encompassing low mood. Dr. Barnhill believes major depression may be the most debilitating disease in all of medicine because it impairs an individual’s ability to function overall, which most physical diseases do not do.

Dysthymia/Chronic Mild Depression differs from major depression in that the sad feeling may last for longer duration of time, but an individual does not feel as depressed.

Adjustment disorder is a depression that is brought on as a reaction to stress and lasts less than six months.

Demoralization is a type of depression for people who try and maintain active goals and interests, but who are unable to participate because they are so ill. If you removed the illness, they would be functioning individuals. This differs from major depression because you cannot take away the stress and sadness in major depression and have the person function normally.

Substance-induced mood disorder is a depression that is brought on by using drugs, either illicitly or by prescription. Steroids have been associated with depressed moods, and using cocaine can give an individual a high, followed by a deep low.

Related Issues

Dr. Barnhill also added that anxiety often accompanies depression. This may lead a depressed person to feel paranoid and confused. Additionally, many patients will somatize their depressive feeling, meaning that they will complain of physical symptoms rather than reporting feeling depressed.

When an individual is feeling depressed, Dr. Barnhill stressed that overall they just don’t feel right reporting both physical and mental problems, such as lack of concentration. Dr. Barnhill stressed that it’s a difficult and cyclical process, because depressed individuals who don’t feel good about themselves think in a very binary fashion which may make them more likely to withdraw from social situations.

This black/white thinking is important, he noted, because it is an avenue for intervention.

Depression and Lupus

Depression is common in lupus, just like depression is common in all chronic illness.

It is common in the general population as well. In any given year, about 10% of the general population will become depressed, without any added stressors. In the SLE population, the prevalence of depression in a given year increases to 30%. Dr. Barnhill explained that the increase in depression among those living with lupus can be related to psychological or physical reactions to lupus or the lupus medications, or some combination of those, or the depression can be independent.

Psychological Reaction to Lupus

Living with lupus can be very isolating because you never know if you will be able to plan a picnic with your family and friends, for example, and that feeds into a depressive cycle. You may not want to initiate plans, which feeds into a feeling of isolation, which then may make someone feel depressed.

Of course, living with lupus is also stressful. We know stress does not cause lupus, but there is some debate about whether stress can cause a lupus flare. While there is no definitive link between stress and lupus flares, there does seem to be some kind of association between the two. It would make sense on the surface, but the complicating factor is when you start to undergo a flare you might be more likely to look back at the past month or so and say it was stressful.

Biological Reaction to Lupus

We don’t know how lupus affects the nervous system. Neuropsychiatric lupus is an umbrella term that includes 12 central nervous system conditions as well as 7 peripheral nervous system conditions. There is a lot of research dedicated to uncovering the cause and effect relationship of lupus to the nervous system and how it impacts lupus health outcomes.

Essentially, Dr. Barnhill said we don’t have a great understanding of why some people may develop neuropsychiatric lupus conditions, but when you account for conditions such as headaches or cognitive dysfunction, it is clear that for some people living with lupus their central nervous system is affected. However, Dr. Barnhill stressed that not everyone develops a neuropsychiatric condition.

Reaction to Lupus Medications and Treatment

Steroid therapy is commonly used for lupus patients. These medications alone can cause feelings of depression and anxiety. Many patients report feeling depressed after beginning a course of steroids; however, there are other patients who report an improvement in mood.

Steroid Psychosis is a condition where a patient experiences a psychotic event brought on by steroids. Lupus cerebritis is an infection in the brain caused by inflammation, but this condition can also lead to psychotic symptoms. If a patient with lupus is experiencing psychosis related to the steroid treatment, it may be necessary to reduce the dosage. However, if the psychosis is related to the lupus independently of the steroids, it may be necessary to increase the steroid dosage.

Dr. Barnhill discussed the variety of treatment options that are available to individuals who are depressed. He stressed that most of the treatments he recommends for depression do not involve medications. Rather, Dr. Barnhill suggests psychotherapy, as well as support groups, exercising, keeping a healthy diet, getting enough sleep, and keeping a routine.

Of course, medications are commonly used to effectively combat depression. There are several types of medications and every person is different, so not everything will work for everyone. Dr. Barnhill broke down medications for depression into several groups, which are explained below.

Types of Lupus Medications

Selective Serotonin Reuptake Inhibitor (SSRI’s)
Dr. Barnhill said SSRI’s are the most famous group of medications. This classification includes drugs such as Prozac, Celexa, Lexapro, Paxil, and Zoloft. Currently, this group of drugs is most commonly used to treat depression. All the SSRI’s are very similar in their treatment. They all take several weeks to begin working and have relatively mild side effects such as minimal weight gain and problems with the gastroinstential tract. On the whole, the SSRI’s are safe, which is why they are so commonly prescribed.

Serotonin-norepinephrine reuptake Inhibitor (SNRI’s)
This group of medications includes Cymbalta and Effexor. SNRI’s have the added effect of treating pain. These medications essentially do “double duty” and may help to alleviate feelings of depression as well. These drugs may be difficult to withdraw from, however, and it must be done slowly.

One of the side effects of both SSRI’s and SNRI’s is sexual dysfunction, including difficulty becoming aroused and delayed orgasm.

Wellbutrin is a medication that does not have sexual dysfunction as a side effect. It is an activating medication, meaning that it provides the individual with more energy. This makes it quite popular.

Remeron is a sedating medication that should be taken at night. Because it helps to cause sleep, a depressed person may get a better night’s sleep while taking Remeron and therefore feel better.

Dr. Barnhill said the above medicines work much of the time, but not all the time. Somewhere between 20-30% of people will not get better taking these drugs. If the drugs are not working, you and your doctor may want to change them after six weeks or adjust the dosing. Additionally, your doctor may try some of the older anti-depression medications or try adding stimulants. Dr. Barnhill also added that because depression is a cycle, sometimes people will get better on their own.

Depression and Lupus: How You Can Find Help

Su Jin Kim spoke next about HSS initiatives about lupus and depression, what we know about depression and lupus, what type of talk therapies exist, communication tips, and resources to help cope with depression.

Ms. Kim noted that research shows that up to 60% of lupus patients will have depression at some point, depending on the factors the researcher is looking at. The Rheumatology Division at HSS and the Department of Social Work Programs did a small pilot study last year, using a depression screening tool known as the Patient Health Questionnaire (PHQ-9) and found that depression rates were high. They also provided a psychosocial intervention and mental health referrals and found that 80% of patients actually completed the intervention. Ms. Kim believes the results of this pilot study will be helpful in designing effective interventions for depression in the lupus community.


There are clearly many challenges related to living with lupus, which can take an emotional toll on the person living with lupus, as well as their family members. Ms. Kim listed the following as some additional stressors that may contribute to feelings of depression among those living with lupus:

  • Challenge of managing a chronic illness (i.e., pain and fatigue)
  • Unpredictability of illness and flares, both of which make it difficult to schedule/plan
  • Effects on self-esteem and identity
  • Impact on your career choices
  • Impact on your relationships
  • Role changes/shift in family and couple dynamic

A recent exploratory study, by Beckerman and colleagues (1), illustrated that among those with lupus, the highest causes of depression and anxiety are related to changes in physical appearance, such as weight gain and hair loss, and physical limitations.

The more chronic your lupus symptoms are, the more feelings of depression you may have. Individuals without health insurance have increased rates of depression. If an individual feels that they have control over their lupus, they are less likely to feel depressed. African Americans and Hispanics report more unmet psychosocial needs and higher rates of depression than Whites with lupus.

Talk Therapy

Ms. Kim then brought up the treatment option of talk therapy, stressing that it’s a personal choice. Sometimes patients will tell Ms. Kim that they would talk about their feelings with their pastor, or a family members, and that’s completely fine, Ms. Kim explains. There is no right or wrong choice, she adds. Something different can work for different people. However, talking to a professional can be beneficial in providing clarity and helping you through a difficult transition.

Engaging in talk therapy is also a commitment, as it generally requires once weekly meetings for about 50 minutes and can involve traveling as well. Additionally, many feelings and issues can come up during therapy, and you need to make sure you have carved out the proper amount of time to work through that.

If you’ve decided that you want to try talk therapy, you may become confused trying to decide which type to pursue. Ms. Kim provided a description of several of the most popular types of talk therapy:

Cognitive Behavioral Therapy (CBT)
CBT is a short-term, focused psychotherapy where a therapist works with you on examining your present day negative thoughts and behavior patterns. It is grounded in the understanding that our thinking plays an important role in how we feel and what we do. The therapy sessions are structured and within a set length of time, and the therapist will often assign homework. CBT is an active therapy because it requires you to work on issues between sessions. It has been shown to be effective with the lupus population and it is a good therapy option for people who are more solution-focused.

Psychodynamic Therapy
This is a form of therapy where you explore your behaviors, feelings, and early life experiences and how these have influenced your current behaviors, feelings, and relationships. The length of therapy can range from a few months to a longer, ongoing period of time. This is a good match for an individual who is more self-exploratory.

Interpersonal Therapy
Interpersonal therapy is not performed on its own; rather it is integrated into CBT or psychodynamic therapy. It is a short-term intervention that focuses on the interpersonal context and building interpersonal skills. While depression is not caused by interpersonal stressors, depression can be made worse by interpersonal conflict, and this therapy works to improve this domain.

Mindfulness Based Therapies
This type of therapy combines talk therapy with the practice of meditation. One example is “Mindfulness Based Stress Reduction,” which was established by Jon Kabat-Zinn. It is a structured 8-10 week course in a group that involves talking, body scanning, meditation, and homework assignments. The focus of the therapy is on reducing pain and improving physical and mental well-being. This type of therapy is well researched with patients who have chronic pain, such as patients with fibromyalgia or rheumatoid arthritis.

Other Talk Therapies
Ms. Kim said that group support, such as the SLE workshop, or group therapy, which would be more intensive, can be beneficial for patients, as well as peer-to peer support programs such as LupusLine® and Charla de Lupus/Lupus Chat® or LANtern® Lupus Asian Network, all of which are offered at HSS. Couple and family therapy may also be beneficial, particularly if there is a shifting of roles due to your illness.

It may be difficult to decide what kind of therapy is right for you. Ms. Kim suggests doing some research on your own and asking your health professionals and friends who have engaged in therapy or are knowledgeable about the subject for advice. There is no right answer. Sometimes you may have to “shop around”, meaning try a different type of therapy for a period of time and decide if it is effective for you.

The same approach goes with finding the right therapist. First impressions of a therapist may not always be right. Try working with your therapist a few sessions in order to decide if you feel comfortable and heard by them. When you are looking for a therapist, some good questions to ask are: what kind of therapy they offer, do they have any experience working with chronic illness/ lupus patients, if they offer a consultation, and what their fee is. Most importantly, Ms. Kim stressed that therapy has become much more mainstream and accepted and the stigma of using a mental health provider continues to decline.

The Importance of Good Communication

Ms. Kim then spoke about ways to communicate with yourself, your family members, and your providers when struggling with depression.

Communicating with yourself
First, you need to be gentle with yourself. Ms. Kim said that in her experience many patients experience stress and depression from believing they must accomplish everything quickly. Ms. Kim reminds them to breathe and take it easy, and often, this simple reminder helps to calm them.

Use positive self-talk, such as “You can do it!” and “Keep it up!” Ms. Kim pointed to the strength of her patients, saying many of them have gotten through very stressful situations as a result of their strength. Remind yourself of what worked in the past and make modifications to your schedule based on your health.

Communicating with your Family and Friends
If you are the person feeling depressed, often the last thing you want to do is reach out and talk to others. But Ms. Kim stressed that it is important to talk to others and express how you feel. “It’s okay to ask others for help,” she explained.
If you are the family member or friend, it can be frustrating dealing with a depressed loved one. You need to stay patient and connected. Being aware that sometimes depression causes a person to withdraw can help you normalize what is going on with your loved one. It might be useful for everyone affected to seek therapy in order to cope with the changes occurring within your family.

Communicating with your Providers
Remember that your emotional and psychological well-being are important. It is important to share how you are feeling emotionally with your provider as well as how you are feeling physically.

Ms. Kim realizes that depending on the style of your provider, sharing your emotions with them can range from easy to difficult. She recommends sharing a little bit of your life naturally with your provider at each visit so that a relationship is builds over time, so that if you are ever in a crisis situation, your provider is in a better position to help you.

Ask the health care provider you feel most comfortable with - whether that is your general practitioner, your nurse, or your social worker - for behavioral health resources.

Anyone can be a great resource!

Learn more about the HSS SLE Workshop, a free support and education group held monthly for people with lupus and their families and friends.

(1) Beckerman, N.L., C. Auerbach, and I. Blanco, Psychosocial dimensions of SLE: implications for the health care team. J Multidiscip Healthc, 2011. 4: p. 63-72.

Summary by Lysa Silverstein, MPH, MSW
Ms. Silverstein was a Social Work Intern and the SLE Workshop Coordinator at the time of writing this summary


Headshot of John Barnhill, MD
John Barnhill, MD
Chief of Psychiatry, Hospital for Special Surgery
Professor of Clinical Psychiatry, Weill Cornell Medical College

Su Jin Kim, LCSW
Social Work Manager, Rheumatology
Hospital for Special Surgery


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