Lupus and Your Mental Health

January is Mental Wellness Month! We asked Heather Rose Artushin, a licensed clinical social worker, to share information and insights into understanding and protecting your mental health when you have lupus.

This blog post is the first in a four-part series that we will be publishing every Friday this month. This blog post contains discussion of depression and suicide. If you are having thoughts of harming yourself, please call or text 988 to reach someone who can help. 

When you’re diagnosed with lupus 

Hearing the words, “You have lupus,” can make you feel scared, sad, angry, worried, overwhelmed, and many other emotions. It can take up to six years to receive a lupus diagnosis, and after countless tests, mysterious symptoms and even misdiagnoses, you might be surprised to feel relieved to finally have an answer. 

After learning that you have lupus, you might feel a sense of grief. It can take time to come to terms with being diagnosed with a lifelong chronic disease like lupus. Reflecting on the loss of the way life was before lupus, the limitations that lupus symptoms unexpectedly bring and what this means for your life moving forward can add to the grieving process. 

Many people find themselves going through the stages of grief after a lupus diagnosis, including denial, bargaining, anger, and sadness. If you’ve experienced a number of stressful life events before being diagnosed with lupus, or have a history of depression, you may be at greater risk of psychological distress at the time of diagnosis.^[1]

If you’ve recently been diagnosed with lupus, it’s okay to feel a roller coaster of emotions, to cry and feel angry, or to feel relieved that you finally have an explanation for all the symptoms you’ve been experiencing. Take your time and let the diagnosis sink in. During this time, ask your doctor plenty of questions, and lean on the people in your life who love and support you. 

Mental health implications of lupus 

At any point during your journey with lupus, your mental health can be affected. Research shows that people living with lupus are more likely to experience anxiety and depression than the general population. About one out of four of people with lupus experience depression, and about one out of three struggle with anxiety.^[2,3]

When lupus causes headaches, brain fog (trouble thinking or remembering) and depression, it is known as neuropsychiatric lupus. As many as 9 out of 10 people with lupus will have some of these symptoms at some point in their lupus journey.^[10] While treatment typically focuses on addressing the underlying lupus diagnosis with corticosteroids and immunosuppressants, it can be validating to understand where your symptoms are coming from and empowering to seek help from a licensed therapist to support you emotionally along the way. 

People with lupus are also at higher risk of thoughts of suicide or self-harm.^[4,5] On your darkest days with lupus, it can be hard to hold hope for brighter days ahead. Your life matters, and lupus can get better with the right treatment and support. 

If you’re having thoughts of suicide, please reach out for help. Call or text 988 to access the Suicide & Crisis Lifeline. For immediate medical help dial 911 and tell the operator you have a psychiatric emergency. 

Lupus can affect your mental health in a variety of ways. 

• Lupus symptoms, like mood swings, memory problems, difficulty concentrating, and confusion, can take their toll on your mental and emotional health. 
• Chronic pain increases your risk for anxiety, depression and substance use disorders.^[6] Research shows that chronic pain and mental health disorders can contribute to, and exacerbate, one another.^[7]
• Energy and activity limitations related to lupus symptoms can make it difficult to complete daily activities. This can make it hard to work and do the things you enjoy. You might find yourself experiencing a loss of income, and missing the sense of purpose you once gained from work and other activities. 
• Social isolation can lead to feelings of loneliness and depression for people with lupus who find themselves lacking energy for social activities. Lupus symptoms can make going out painful and uncomfortable, causing you to withdraw. 
• Uncertainty about the future is something many people with lupus struggle with. The unpredictability of lupus flares can lead to anxiety. You might wonder how the disease will progress over time and worry about how you’ll cope with lupus in the future, physically, emotionally and financially. 
• Relationship challenges can arise along your journey with lupus, taking a toll on your mental and emotional health. Some friends and family members might struggle to understand what you are going through because lupus symptoms come and go and are often invisible. 
• Self-esteem concerns can take hold, especially when you notice changes in your appearance, like rashes, weight changes, hair loss, or other physical symptoms of lupus. You might not feel like yourself. These feelings of insecurity can also make it harder to socialize. 
• Some medications used to treat lupus, especially corticosteroids such as prednisone, at higher doses of 20 mg or more, have been shown to play a role in causing clinical depression.^[8,9]

You are not alone. Talk with your doctor about any symptoms you are experiencing related to your mental health. Find a therapist to support you on your lupus journey and learn more about ways to cope with the mental health impacts of lupus.

Authored by:
Heather Rose Artushin, LISW-CP

This blog post and the lupus resources found on the National Resource Center on Lupus are, in part, supported by the Centers for Disease Control and Prevention under Cooperative Agreement Number NU58 DP006139. The contents are solely the responsibility of the developers. Points of view or opinions do not, therefore, necessarily represent official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

This blog post is for educational and information purposes only. Consult with your doctor/health care team for medical advice.