It is normal to feel overwhelmed at times. You may feel stressed, anxious, depressed or even angry. Emotions are a part of life, yet at times they are overwhelming.  When you have lupus, a flare, especially when you’ve been feeling pretty decent, can throw you for a loop.  A new diagnosis of lupus comes with a torrent of emotions – too many and varied to name. It’s okay to feel what you feel – just as much as it’s okay to reach out for help in order to be able to cope.

• Introduction
• Lupus’ Effects on Mental Health
• The Positive Impact of Mental Health Therapy on Emotional Well-Being and Lupus
• Finding the Mental Health Practitioner Who’s Right for You
• In Conclusion

Introduction

Experiencing life means experiencing a gamut of emotions – at one time or another you may feel joy, sadness, fear or even rage. When you have a hard time overcoming negative feelings on your own, however, it’s time to reach out for help. Having lupus isn’t just about how you feel physically – it’s about how you feel mentally as well. Your body is one big system and how your body feels can greatly impact your mental outlook, too – there is without question a mind-body connection. In a 2012 meta-analysis, researchers Wang, Wei and Zhang examined over 460 studies conducted on individuals with SLE and the effects of psychological interventions and determined that these individuals “not only inevitably experience a range of somatic symptoms like pain and fatigue, but also deal with existential, emotional, social and psychological difficulties such as reduced stress threshold, anxiety, [and] depression…brought on by their disease.”

From the fast-pace of our high-tech world and a culture focused on productivity, to dealing with chronic illness, it’s sadly become the norm to sometimes feel emotionally stressed in one way or another. Mental Health America (MHA) cites that in 2015, 44 million Americans reported having a mental health condition. While more Americans have access to healthcare today and are able to seek mental health treament, approximately 9 million Americans’ needs are still going unmet. It’s no wonder you may be feeling overcome with emotion and like there’s no way to escape.

Lupus’ Effects on Mental Health

No one knows better than you what it feels like to deal day-to-day with chronic illness. However, having a better understanding of why you may feel like you do – and why it’s normal ­- may help you cope a bit better and realize the significant role your mental health can play in your overall well-being and why it’s so important to be treated holistically.

According to WebMD, here are just some of the ways your mental health can be affected when you have lupus:

• Pain and Fatigue – never feeling like you can get one step ahead of pain can lead to feelings of exhaustion and fatigue. Lupus fatigue itself is a very real thing and when you experience the effects of low energy or even brain fog and cognitive dysfunction day in and day out, it’s normal that it’s going to get to you emotionally.
• Changes in Physical Appearance – experiencing skin disorders such as cutaneous lupus, rashes or dermatitis can not only change your appearance, but can deteriorate your self-esteem as well.
• Medications – many medications come with some pretty significant side effects that can be debilitating. Struggling with these side effects can cause feelings of frustration, anger and depression.
• Lifestyle Changes – maybe you were once an athletic person who ran marathons and now find making dinner exhausting. Maybe you were someone who had a thriving career who had to quit because of your lupus. Having to give up the things you love and readjust can be incredibly stressful and cause ill feelings.
• Personal Relationships – you may feel socially isolated from the people you care about because you can’t participate in the social activities you used to and maybe your friends and family don’t understand and take it personally. Strains in your relationships can cause you to feel less supported and more alone.
• Uncertainty about the future – if your mind is focused on how you may be feeling days or even years from now or you question whether or not you’ll ever feel “normal” again, you probably experience a great deal of anxiety. You may never feel like you can settle your mind or stop your worrisome thoughts which can be debilitating.

The Positive Impact of Mental Health Therapy on Emotional Well-Being and Lupus

There’s no shame in needing to talk to someone from time to time. While it can be great to have family and friends who’ll listen, many of us often need to speak to someone who is not so close to the situation and can offer unbiased support. Speaking with someone specially trained in cognitive behavioral therapy (CBT), for example, can help us gain greater insight into ourselves, give us tools to cope when our emotions get the better of us and help us feel better.

Wang, Wei and Zhang (2012) determined that mental health counseling can help individuals with SLE “understand the link between negative emotions and relapse, thus strengthening physical, psychological and social self-care strategies.” In a randomized controlled trial published in 2010, Spanish researchers noted that their “results suggested that [cognitive-behavioral intervention] significantly reduced stress, anxiety and depression, considerably improved the QOL [quality of life], and reduced some somatic symptoms.” While the researchers acknowledge that there was “no significant reduction in the disease activity index [of lupus],” cognitive-behavioral intervention is “effective in dealing with patients suffering from lupus and high levels of daily stress.”

An article published in Arthritis & Rheumatism in 2004 followed a randomized controlled trial of the effects of a stress-reduction program on individuals with SLE. Participants engaged in a six-session biofeedback and cognitive behavioral program in order to learn how to better manage their stress. The researchers concluded that participation in the program “appeared to enhance the participants’ perceptions of efficacy for managing symptoms, maintaining valued activities, and general well-being” and that in a 9-month follow-up survey the participants continued to show an “improvement in psychological functioning relative to usual care.”

Finding the Mental Health Practitioner Who’s Right for You

There are too many people out there who claim to be able to fix all that ails you. While some are reputable, many are not which makes it very important to be able to choose the person who will hopefully be right for you. Your trusted healthcare practitioner should be able to help you find the right kind of therapist for your needs.

• Psychiatrists – these licensed medical doctors can diagnose conditions, provide treatment/medications and sometimes therapy.
• Psychologists – these individuals hold a doctoral degree in psychology and can diagnose conditions and provide therapy, often in the form of cognitive behavioral therapy (CBT).
• Psychiatric/Mental Health Nurse Practitioners – these nurses can assess and diagnose conditions and sometimes prescribe medications.
• Counselors, Clinicians and Therapists – these individuals hold a master’s degree in mental health and can provide counseling that helps with symptom reduction.
• Clinical Social Workers – clinical social workers hold a master’s degree and can evaluate mental health and provide therapy. They are also trained in case work and advocacy.
• Certified Peer Specialists – these specialists have lived with mental health conditions themselves and are often trained and certified to provide support and guidance.
• Pastoral Counselors – clergy members who are trained to diagnose and provide counseling.
• Online Therapy – there are many online resources for therapist, though it can be difficult to find and choose one.  Luckily the National Council on Aging has a website that may help you decide whether to try online therapy.  Here’s a link to this page: https://www.ncoa.org/adviser/online-therapy/what-is-online-therapy/

In Conclusion

You don’t have to feel alone and like things will never change. You show tremendous strength in your day-to-day battle with lupus and it’s only normal that you are going to experience times when you feel like you can’t cope successfully – being courageous can be exhausting! Remembering to treat your whole being kindly – mind, body and spirit – can help you fully experience joy during the good times, give you hope on the when you’re running low on spoons and the coping skills to effectively manage your emotions.

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References

Callejas-Rubio J.L., Coin, M.A., Hidalgo-Tenorio, C., Jimenez-Alonso, J., Navarrete-Navarrete, N., Ortego-Centeno, N.,…Sabio-Sanchez, J.M. (2010). Efficacy of cognitive behavioural therapy for the treatment of chronic stress in patients with systemic lupus erythematosus: A randomized controlled trail. Retrieved from: https://bit.ly/2NKGLce

Greco, C., Manzi, S., & Rudy, T. (2004). Effects of a stress-reduction program psychological function, pain, and physical function of systemic lupus erythematosus patients: A randomized controlled trial. Retrieved from: https://onlinelibrary.wiley.com/doi/pdf/10.1002/art.20533

Lupus and mental health concerns (2017). Retrieved from: https://www.webmd.com/lupus/guide/psychosocial-aspects-lupus#1

Types of mental health professionals. (2019). Retrieved from: https://www.nami.org/learn-more/treatment/types-of-mental-health-professionals

Wang, C.M., Wei, W., & Zhang, J. (2012). Effects of psychological interventions for patients with systemic lupus erythematosus: A systemic review and metal analysis. (2012). Retrieved from: http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.886.9034&rep=rep1&type=pdf

 

Author: Liz Heintz

Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.

All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.

All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.