Lupus, Emotional Stress, and Depression: What You Need to Know

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People with lupus are at higher risk of depression and anxiety because of all the stressors a chronic condition can bring on. Here’s how to cope.

The licensed clinical psychologist Monica Blied, PhD, was a 27-year-old graduate student and single mother when she discovered that the debilitating fatigue and body-wide pain she was experiencing had a name: systemic lupus erythematosus. “My lupus diagnosis was a shock. I lost the hope of a healthy me,” she says.

At the time she had a 4-year-old. She worried about losing her ability to walk, she says. “I thought that losing my ability to walk would be the ultimate irony; I had been a runway model for Los Angeles Fashion Week and Ebony Fashion Fair!”

She lived in Southern California and loved trips to the beach. “But you’re supposed to avoid sun exposure with lupus. So, no more beach trips,” she says.

She worried about finishing the doctoral program she was working on. “For someone with a type A personality like me, who equated my success with my level of productivity, it was devastating. I questioned my self-worth,” Dr. Blied says.

Blied felt anxious, depressed, and scared.

These feelings are unfortunately common in people with lupus. Rates of depression and anxiety are twice as high in people with lupus compared with those who don’t have the condition, according to a review of 59 studies involving 10,828 people with lupus, published in the journal BMC Psychiatry in 2017. The data showed that one in four had signs of major depression and 40 percent had anxiety.

Blied, now 36, worked toward discovering a new normal. It took years. “I had to learn what ‘health’ really looks like. The gift and opportunity lupus gave me is that I’m now more mindful of what my body needs and of the beauty in every day,” she says.

Today, Blied is the director of the Faces of Health Wellness Center in Claremont, California, and an adjunct professor of psychology at Pepperdine University. She’s on the boards of several lupus organizations and works with people facing mental health challenges due to lupus and other chronic health conditions.

“I’ve met amazing people living remarkable lives with lupus,” Blied says. “I know firsthand that you can reduce the stress and prevent, treat, and reduce the depression that can come with it. You can live a life filled with purpose, value, and joy.”

Here’s what else experts say people with lupus should know about how the chronic condition, stress, and depression are linked.

RELATED: New Data Reveals Disparities in Lupus Rates, Particularly for BIPOC Women

Can Stress or Depression Actually Cause Lupus?

It’s not likely that depression or stress could independently cause systemic lupus, says Sarah Patterson, MD, a rheumatologist at the University of California in San Francisco. “We know that lupus is caused by a biological problem — the body’s loss of tolerance to cells in the adaptive immune system.”

What specifically causes the body’s immune system cells to malfunction in this way is less clear. But researchers generally agree it’s likely a combination of factors, including the genes you’re born with that may predispose you to lupus, hormones, and things in the environment that you’re exposed to (like viruses, drugs, chemicals, and stress); ultimately all these factors play a role in determining if you develop lupus or not, according to the Lupus Foundation of America.

And for people with the chronic condition, feeling stressed can trigger flare-ups of symptoms, according to the Centers for Disease Control and Prevention (CDC).

There’s even some evidence from a small study (only 45 people were included) that people with lupus who underwent 10 cognitive behavioral therapy sessions reported less stress, depression, anxiety, and pain afterward, as well as fewer skin and musculoskeletal lupus symptoms.

Dr. Patterson and others at UCSF are currently looking closely at whether chronic stress, as well as big stressful events, are really exacerbating lupus flares (times of intense pain and fatigue). “We want to find out whether it’s really the stress, or if something else that is happening during a difficult time could be responsible — such as trouble getting regular physical activity, having sleep problems, or not being able to take medications or get needed treatments,” she says.

The results could help people with lupus better manage their health.

RELATED: What We Know About What Causes Lupus

Does Lupus Cause Depression? 

People with lupus face a higher depression risk for many reasons, Patterson says. Severe pain, chronic fatigue and ongoing sleep problems can all contribute to this mood disorder, she says. So can ongoing stress.

Lupus pain and fatigue can also lead to social isolation, another depression risk factor.

You may face new challenges at work, discover that you don’t have the energy for socializing, or find it difficult to continue a relationship with a romantic partner or start a new one after being diagnosed with lupus, Blied says. You may find that while your friends are building careers, romantic partnerships, and families, you’re busy managing a chronic illness instead.

“Physical limitations and a decreased quality of life can play roles in depression,” Patterson says.

RELATED: How to Identify Lupus Rash and Other Skin Symptoms of the Condition

Lupus is most common in women, and it’s often diagnosed when people are in their twenties and thirties — during their reproductive years. “You may face new questions about your reproductive health due to lupus, and feel isolated from friends who don’t relate to the experience of living with a chronic condition,” Patterson says.

Meanwhile, people whose severe lupus began in childhood may also be dealing with emotional trauma, especially if they were hospitalized with life-threatening lupus or took medications with severe side effects as children.

Blied adds that Black, Latinx, and Native American people with lupus — groups at highest risk for the condition — may face extra anxiety, particularly at work. “If you feel like you have to work twice as hard in order to be respected and acknowledged, then the prospect of asking for time off or accommodations due to lupus is very difficult,” she says. “Even just telling people you have a chronic condition that causes pain and fatigue and organ damage is very stressful.”

In a study published in 2018 in the journal Arthritis Care & Research of 682 women with lupus, financial worry increased the risk of depression by 85 percent over two years, in contrast with the women who had fewer money concerns. Work disability is common among people with lupus, the study authors note. “Worrying about income and paying bills all the time can definitely increase your stress level,” says Patricia Katz, PhD, an author of the study and a professor of medicine and health policy at UCSF.

RELATED: 5 Things Selena Gomez’s Battle With Lupus Has Taught Us About the Autoimmune Disease

If you’ve received a lupus diagnosis, there is also the chance that some of the medications you take, especially corticosteroids like prednisone at higher doses, could contribute to depression, according to the Lupus Foundation of America. Lupus can also affect your nervous system and cause symptoms such as memory problems, difficulty concentrating, mood swings, and confusion. These symptoms are sometimes referred to as “lupus fog,” according to the Lupus Foundation.

Dr. Katz notes that pain, fatigue, and poor sleep — everyday hallmarks of lupus that can rev up stress and depression — aren’t well-controlled by the immune-suppressing medications that battle the underlying cause of the disease. These treatments are crucial for slowing disease progression and organ damage, but people with lupus may have to work with their doctor and look to self-care strategies to ease these daily symptoms, Katz says.

“Worrying about income and paying bills all the time can really increase your stress level,” she says.

RELATED: The United States of Stress

What Should You Do if You Have Lupus and Think You’re Depressed?

Call your doctor right away if you’ve been experiencing any of these warning signs of depression over the past two weeks.

  • Persistent sad, anxious, or “empty” mood
  • Feelings of hopelessness or pessimism
  • Irritability
  • Feelings of guilt, worthlessness, or helplessness
  • Loss of interest or pleasure in hobbies and activities
  • Decreased energy or fatigue
  • Moving or talking more slowly
  • Feeling restless or having trouble sitting still
  • Difficulty concentrating, remembering, or making decisions
  • Difficulty sleeping, early-morning awakening, or oversleeping
  • Appetite or weight changes
  • Aches or pains, headaches, cramps, or digestive problems without a clear physical cause or that do not ease even with treatment

Call the National Suicide Prevention Lifeline immediately at 800-273-8255 (or use the chat function on the group’s website) if you’ve had thoughts of death, suicide, or are in crisis.

“Having the courage to reach out and ask for help is critical,” Patterson says. “Talk to your doctor and ask for a referral to a mental health provider. Don’t be afraid to use all the tools available to you.” This could mean taking an antidepressant, working with a psychologist or a psychiatrist, getting support from friends and family, and making lifestyle changes that can help, such as making more time to be physically active and working on getting high-quality sleep.

Patterson notes that if you do have depression, lifestyle changes are still important, but those alone may not have the power to lift your mood. “If you’re already taking a lot of medications you may be reticent about adding one more. But taking an antidepressant to get you through a rough patch can be very helpful,” she says. “Depression doesn’t typically improve without assertive treatment.”


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Photo by Christian Erfurt on Unsplash

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