Coping with the Mental Health Impacts of Lupus

Living with lupus can significantly affect your mental health. This January we are honoring Mental Wellness Month by exploring the intersection of lupus and mental health with a four-part series of blog posts published every Friday. More than half of people with lupus experience mental health concerns, from depression to anxiety and beyond, so it’s important to make space for activities that protect your mental health in your day-to-day life.^[1,2] 

Here are a few positive coping strategies to help you take care of your mental health while living with lupus. 

Stress Management

Research shows that stress contributes to lupus flares and disease activity.^[3]Managing stress can be challenging, especially when you’re dealing with debilitating lupus symptoms, work and family changes and other stressful life events. Finding ways to better manage stress can help you to feel better, both physically and emotionally. 

Mindfulness has been shown to reduce stress and improve quality of life for people with lupus.^[4,5] Finding a comfortable place to sit, taking a few deep breaths, focusing your attention on the present, and using your five senses to immerse yourself in the sensations of the world around you, can be simple ways to practice mindfulness daily for stress-reduction. A body-scan meditation, like this one, can also help soothe chronic pain. 

Yoga, tai chi and meditation are other approaches to reducing stress supported by research. Regular yoga practice may reduce the intensity of anxiety, and progressive muscle relaxation is a promising intervention for anxiety and depression.^[6] 

No matter what stress management approach works best for you, make it a habit to tune in to your thoughts, feelings and body sensations throughout the day. This can help you to handle emotions, including feelings of stress and anxiety, as they arise. Increasing your awareness can help mitigate stress and let you know when it’s time to reach out for help. 

Journaling 

Journaling can be a helpful tool when you’re living with lupus. Your journal is a great place to track your thoughts, feelings, symptoms and body sensations when you check-in with yourself throughout the day. The more data you collect in your journal, the better you’ll be able to notice possible triggers that worsen your lupus symptoms so you can avoid them in the future. This information can help you make the most of your medical appointments with your healthcare team. 

Using your journal as a safe place to express your emotions can also reduce stress and give you a greater sense of control. In fact, research shows that expressive writing about traumatic, stressful, or emotional events in your life can actually improve both your physical and psychological well-being.^[7] Some people living with lupus have also found journaling to bring greater mental clarity and believe it to be a helpful tool in preserving memory in the midst of lupus-related brain fog.

Finding Support 

Lupus can be unpredictable at times, so having a clearly-defined support network can give you the practical and emotional support you need on tough days. It can be helpful to map out your support network to remind yourself that you’re not alone on this journey, and to have a plan for when help is needed in the future. 

Here are a few things to consider when creating your network of support: 

1. Consider how you can best support yourself each day. Create a thoughtful self-care plan outlining how you can be your best support person in your daily life. You might commit to a regular bedtime and wake time, create a nutrition plan, schedule a time for journaling and meditation, prayer, or other activities that nurture your mind, body and spirit. 
2. Embrace those in your inner circle. The people closest to you – your best friends, family members, partner, etc. – are those that you call upon for emotional support and for practical help when you need it, whether it’s a ride to the doctor’s office, a meal or help with your children when you’re in the midst of a flare. Let the people in your inner circle know how much you appreciate their love and support and take time to share with them the ways you might call upon them for help in the future as you navigate life with lupus. 
3. List your professional support systems. Medical providers and therapists can go on this list, as well as any other support avenues you have available that you can afford to employ when you need it. This might include meal delivery services, house cleaners, babysitters, and other professional helpers you can plan to utilize when needed. 
4. Identify those in your outer circle. Friends from church, organizations or sports teams you’re a part of, and people in your neighborhood might fall into this category of support. Consider how they might support you – a neighbor might agree to mow your lawn, or your teammates may take turns checking in with you when a lupus flare keeps you on the sidelines. 
5. Get connected to a Lupus Foundation of America support group. The Lupus Foundation of America National Network offers both in-person and virtual support groups across the country. This resource page can help you learn more and get connected. 

Energy Conservation 

Spoon theory is a metaphor for the energy limitations that people with chronic illnesses, like lupus, face every day. Some days you may have more “spoons” of energy than others, and it can be frustrating and discouraging to find yourself unable to keep up with the things you used to enjoy doing. 

One way to plan your energy use is to make a list of all the activities you enjoy. Whether it’s cooking your own meals, playing with your children, volunteering with an organization, or maintaining your garden, what you value most is unique to you. Prioritize your list, putting activities in order of importance. Time and energy management can help you get to the things that matter most when your spoons of energy are limited. 

After taking care of your daily routine – self-care, work commitments, etc. – decide where to spend your remaining energy based on your prioritized list. Living by your values can help you to feel purposeful in where you spend your energy. 

Knowing what’s important to you can also give you the strength to say no to commitments that will steal your energy away from what you value most. Setting healthy boundaries around your time and efforts will help you to live a life you love, even within lupus’ unexpected limitations. Saying no to the people we love can be hard – the more you practice respectful boundaries with your health and wellness in mind, the easier those complex conversations will become. 

There will be days when you aren’t able to do any of the activities on your list, and that’s okay. We all need to rest and recharge, especially when living with lupus. Listen to your body, and spend your energy with intention, whether it’s a little, or a lot. 

Therapy 

One of the most important things you can do to protect your mental health when living with lupus is to find a licensed therapist who can support you. Cognitive Behavioral Therapy (CBT) has been shown to be particularly effective in addressing chronic stress in people with lupus.^[8] 

In therapy, you’ll spend time building trust with your therapist, sharing your story and becoming more aware of your thoughts, feelings and reactions to your lupus symptoms and diagnosis. Your therapist can also support you in navigating the impacts lupus might have on your relationships, your career and other aspects of your life. 

Finding the right therapist is important. Start by getting a list from your insurance provider of in-network therapists in your area, and ask your doctor, friends and family for recommendations. Some therapists specialize in working with people facing chronic health issues, while others might be better equipped to meet you where you are in your anxiety or depression. Today, many therapists are available for online therapy sessions, which are especially convenient when you’re not feeling well. 

If you meet with a therapist and feel they might not be the right fit for you, don’t give up! There are plenty of therapists out there, each with their own unique background, personality and specialization. Finding a therapist you can confide in and enjoy working with is a gift – keep searching until you find the right therapist for you. 

Though lupus can impact your mental health, proactively embracing positive coping strategies can protect your wellbeing and help you feel prepared to manage all the emotions that arise along your journey with lupus. Lean on your support system, find a therapist and tune in to your emotions. You don’t have to navigate your mental health alone!

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.