Emotions can affect your quality of life for better or for worse, including with respect to your sense of identity and your relationship to others. In the words of one of our SLE Workshop members, “emotions are everything I feel, but also how well I handle what I feel.” Often people tend to keep emotions bottled up inside as a way to compartmentalize or deal with things as they come. For people with lupus, flares can increase emotions that are already heightened. Without effective coping skills, it is challenging to manage these intense feelings. Developing strategies and tools for dealing with them can help you: avoid being flooded with emotions and thoughts, find particular ways to de-stress, and accept the feelings that may cause stress.
An emotion is a complex state of consciousness (or feeling). It triggers physical and psychological changes that influence a person’s thoughts and behaviors. At the same time, these thoughts, behaviors and physical changes can affect a person’s mood and feelings. An intense mental experience that causes sensations of pleasure or displeasure can be classified as an emotion. Emotions exist on a spectrum, and we all work with a full “color palette” of them: Like an artist, we “paint” our state of mind and body with all the colors available.1
Emotions include fear, sadness, anger, disgust, surprise and joy, as well as shame, guilt, pride, embarrassment, resentment, confusion, frustration, disappointment, happiness, jealousy and contentment. In other words, “emotion and its experience are not synonymous.”2 This is because “the emotion itself is largely unconscious, causing people to behave in ways of which they are not aware. The feeling associated with the emotion is conscious, by definition, and is available to be experienced …”3 Sometimes, the way you are feeling may be related to deeper feelings (that is, the unconscious) unrelated to your chronic disease. This can complicate your understanding of where the emotion is coming from.
No emotion is better or worse than another. Some individuals express their emotions more deeply than others. Lupus has an impact on your emotions, and your emotions have an impact on your behavior. This can affect your ability to function in everyday life. The unpredictability of lupus flares, and the pain and fatigue can all have a compounding effect on your emotions. Additionally, medications you take to manage your lupus may have side effects that cause mood swings or emotions that are significantly different from those that you normally feel or want to express. Lifestyle choices can also affect your emotions: Your sleep patterns, schedule and environment can alter your feelings.
Coping with an illness, especially an unpredictable one without clear timelines, is stressful. You may have anxiety about the future, especially with regard to possible flares and remissions. Additionally, stress can, in turn, contribute to flares.
Acute stress occurs when we are faced with tasks that need completing on a timeline or when we are running late, having a minor illness, experiencing subway delays, or getting into an argument. Chronic stress, on the other hand, occurs over a period of time. Some examples include family pressures, financial concerns or long-term health issues.
A certain amount of stress is beneficial and helps protect your body from harm. The flight, fight or freeze response that is built into our biological response mechanisms are meant to be productive and allow our body to process stress. But experiencing these physical, emotional and mental responses over a long time can be overwhelming and undesired. When you are feeling stressed, your body releases the “stress hormones” cortisol, adrenaline and norepinephrine. Prolonged release of these hormones often has a negative impact on your physical and emotional health. Stress hormones have been linked to health problems with blood pressure, the immune system and many biological systems.
If you are frequently having intense reactions to stressful events, it is useful to work on strategies to decrease your emotional response.
Conscious yawning exercise
You may recognize that when you are anxious you yawn more. Neuroscientist Andrew Newberg says yawning is a powerful tool. Conscious yawning increases the oxygen content in your body and can reduce stress, increase relaxation and promote alertness and cognitive awareness. Can’t yawn? Try faking it five or six times. You can do this both standing up or sitting down.
Another no-cost, portable de-stressing tool is 4-7-8 breathing, which is a form of the ancient yoga practice of "pranayama" or breath control.
Depression is the most frequently reported mental health problem in people with lupus (between 10.8% to 39.6% of that population – Nery et al, 2008). Depression is a common and normal occurrence, as there are many events and challenges in navigating life’s journey that could lead to the onset of depression. Sadness and anxiety can lead to depression. There is an increased risk in the first two years of a chronic illness for the onset of depression. If you are experiencing little interest or pleasure in things you used to enjoy or are feeling down, depressed, or hopeless, it may be useful for you to find a professional to talk to regarding these feelings.
Experiencing a change in mood for over six weeks could also be an indicator of depression. Other symptoms of depression may include:
If you are presently having feelings of guilt, hopelessness, thoughts of hurting yourself, or suicidal thoughts, please talk to your rheumatologist, social worker, patient advocate, or nurse and ask for a referral to a mental health specialist. If you need immediate help, please call 911.
Anxiety often occurs along with depression. Nearly half of lupus patients experience an anxiety disorder (Nery et al, 2008). Most people recognize the normal, baseline level of everyday anxiety. If you experience a level of anxiety consistently above average, then you may want to seek alternative methods for managing your anxiety and those emotions surrounding it.
Anxiety can cause both physical and cognitive symptoms in one’s body, including:
The pain, fatigue, flares and unpredictability of lupus can influence anxiety. The erratic ups and downs in your health can make it difficult to make or keep plans or stick to a fixed schedule. Overwhelming feelings of dread can lead you to avoid doing certain things. For example, if you dread going to your doctor for your follow-up, you may continually cancel or miss appointments. These “avoidant behaviors” that are triggered by anxiety can prevent you from taking needed medications or getting medical treatment. Like emotions, anxiety disorders lie on a spectrum – from fairly mild to very anxious. Knowing how to properly predict instances where you might become anxious, and anticipating these moments with a plan may help combat feelings of anxiety.
When you think about instances that make you feel depressed, stressed or anxious, are they usually related to a specific obstacle or challenge? It is important to identify the triggers that you can control versus those that you cannot. Some triggers are related to your lupus (such as flares), but some are linked to behaviors or circumstances. For example, if a relative puts you down and makes you feel bad, it may make you feel depressed or stressed out. Lifestyle choices such as choosing the people you surround yourself with can help lessen triggers.
Support begins with self-compassion – treating yourself with the same kindness and care as you do with your and loved ones. Self-compassion seems to help with coping, resilience and enhancing one’s motivation. Research suggests that self-compassion is associated with lower stress, better well-being and adjustment to illness: Self-compassion seems to have a “buffering effect” against stress – to support one's ability to navigate life’s challenges (Sirois, et al, 2014).
It can be frustrating and angering when the people in your life don’t understand what you are going through. Living with lupus has an impact on you and your relationships with others. It can also influence changes in your role in various areas of your life, as well as in your need for help from one day to the next. Sometimes these changes are not easy for others to understand. An important aspect to consider is how to communicate with others and how to ask for support. A few things to consider when thinking about how to gain support are:
There are some basic actions you can take to help regulate your emotions and support emotional health and well-being:
There are also several strategies for emotional health:
Self-efficacy is the confidence to do things that help manage your condition and its symptoms. In the evolution of care, past medical models relied purely on medication and clinical interventions to help manage symptoms. Research has led to new medical treatments that build patients’ skills and confidence in “self-management.” In the 1980s, the Stanford Medical School developed self-management workshops for people with chronic conditions.
By actively working to improve your perceived self-efficacy, you can practice self-management behaviors, such as setting goals around things that you can do to help manage a symptom. This will encourage you to take action and self-manage, which in turn can result in better symptom management, leading to significant changes in your health status. Following this path, improving your self-efficacy can improve your exercise routines, communication skills and mental health management. It can also help you to relax and enhance your ability to find community resources to help deal with depression, anxiety, and stress. The Self-Management Resource Center offers many self-efficacy tools, and more on their evaluation tools page.
Some of us have external sources of control to help navigate life’s journey with lupus. These include medication, physical support like physical therapy, massages, exercise, and mobility aids like a cane or walker. However, we all have natural, internal sources of control to help regulate our emotions. Some examples of internal sources of control include mindfulness, physical exercises such as stretches and tai chi, opportunities for social support, and spiritual connections. It’s important to be aware that lupus has an impact on your emotions, moods, identity, relationships, ability to function and sense of self-efficacy. At the same time, gaining this awareness can help you set achievable goals in regard to coping with your disease and managing your emotional responses.
This presentation was held on 04/27/17. Learn more information about the SLE Workshop at HSS, a free support and education group held monthly for people with lupus, their families and friends.
Summary by Sarah Kencel
Social Work Intern and Coordinator, SLE Workshop
Department of Social Work Programs
Joan Westreich, LCSW-R
Social Work Coordinator, Early Arthritis Initiative
Hospital for Special Surgery
Self-efficacy section by Mayra Lemus
Social Work Intern and SLE Workshop Coordinator
Hospital for Special Surgery
* We hope that you find these resources helpful; they are provided for informational purposes only and are not intended to comprise a complete list. Links to sites are not meant as endorsements or recommendations by HSS or its faculty.