Mindful Management: Living with Autoimmune Disease

Five steps people living with autoimmune diseases can take to incorporate mindfulness and improve quality of life. 

By Elizabeth Kirchner, CNP

Mindfulness is a buzzword that seems to be everywhere, but what does it actually mean? In the most basic sense, mindfulness is sim­ply awareness. Being aware of some of the most fundamental aspects of our lives—our breathing or our surroundings, for example— can help us become aware of more-complex emotions and reactions.

Mindfulness can give us an outside perspective on any situation that is troubling us or requires our attention. The most important aspect of mindfulness is that it is nonjudgmental. When we focus on our breathing, for instance, we aren’t grading ourselves; we are just aware of the sensation of breathing. By practicing mindfulness we can train ourselves to simply be aware of any action or feeling without calling it good or bad, right or wrong. It simply is.

When we release ourselves from the burden of judging various aspects of our lives, we can relax and let go of the things we cannot change. This can lead to decreased stress and improve our quality of life, as well as conserve our mental and physical energy for the things we can change.

Practicing mindfulness can help patients living with autoimmune disease, specifically, manage the daily challenges of living with a chronic condition by offering valuable perspective and coping strategies that can help relieve physical and emotional stress.

Autoimmune diseases can be frustrating in innumer­able ways. In some cases, patients may not appear sick, but they suffer from profound fatigue. Other autoim­mune diseases may cause intermittent or chronic pain. Still others can cause disfigurement in the form of skin rashes, skin color or texture changes, or joint deformi­ties. All of these symptoms and effects of autoim­mune diseases are things that patients must find a way to cope with every day of their lives.

Learning to live with an autoimmune disease is oftentimes only half the battle; having to con­stantly explain yourself to loved ones, friends, employers, and others is another area of stress and frustration. Mindfulness can help with all of these issues. Realizing that you don’t have to explain yourself to everyone all the time, that you don’t have to be “cured” to live a full life, and that you don’t have to conform to anyone else’s expectations can be very help­ful on the path to wellness.

In fact, research has shown the impact of mindfulness on quality of life for those living with chronic disease. In 2010 a social researcher from the Australian Institute for Primary Care published a literature review of 15 studies, revealing that patients who practiced mindfulness saw improvements in mental and physical health, well-being, and quality of life.1 The overall conclusion from looking at all of these studies was that while mindfulness cannot change an underlying condition, it can make it easier to manage and cope with many chronic diseases.

5 Ways to Engage In Mindfulness

  1. Quick Breathing Exercises. This is the easiest way to incorporate mindfulness into your everyday life. It takes between two and three seconds. All you have to do is stop moving, close your eyes, take a deep breath in through your nose, and slowly exhale through your mouth. This is somewhat like hitting a pause button on whatever you were thinking or feeling; you should find yourself a little more relaxed, a little more focused, and a little more ready to tackle your next task, no matter how large or small.
  2. Structured Mindfulness Exercises (Tai Chi, Qigong, Yoga). These are all programs that simultaneously exercise the body, the mind, and the spirit. Finding an instructor who has experience working with people living with autoimmune disease is essential; patients with joint disease, especially, need to keep moving but in a careful, graded manner that does not put too much stress on their joints and other connective tissues. Qigong (or tai chi if you have trouble finding a qigong studio near you) is a good place to start; as your strength and flexibility increase, you can look into also incorporating yoga.
  3. Expressing Gratitude. If you are living with an autoimmune disease, you may be living with chron­ic pain or have severe fatigue, but you can still benefit from consciously expressing gratitude—for the love and support of family or friends, for example.A gratitude journal can be a tool to help remind you of the bless­ings in your life and offer much-needed perspective on your day-to-day existence. Taking the time to actually write down the things that you are grateful for each day can be a positive exercise. If you find yourself strug­gling to think of something to give thanks for (we all have those days), consider noting your gratitude for even the most basic aspects of life. If you are reading this article, for exam­ple, you can be grateful that you are literate; 1 billion adults in the world are not. If you used a toilet today, you are better off than 2.6 billion people on our planet who lack indoor plumbing: be grateful.If you are not the type to keep a gratitude journal, that’s fine; engag­ing in one thankfulness exercise each day is a place to start. You can keep a loose-leaf notebook in your kitchen or next to your bed and, once a day, write down what you are thankful for. It doesn’t have to be elaborate; the point is to help you focus on something outside yourself and fuel the positive energy in your life.
  4. Writing. If you find some satisfaction in writing, this prac­tice can be a powerful learning tool. Writing regularly about our feelings and daily experiences can encourage self-reflection and help us better understand our emotional journey, which can help chart a healthy, productive course for managing the challenges of chronic disease.
  5. Meditating. Call it whatever you are comfortable with—meditation, clearing your head, prayer. The act of conscious­ly deciding to focus on and devote mental energy to one thing can pro­vide clarity in not just whatever we are focusing on but in many other aspects of our lives, as well. When we choose one topic to center our thoughts around, not only does that problem or issue become more clear but the clutter clouding other aspects of our thoughts can fall away.

Meditation can last for 30 seconds or 30 minutes; every little bit helps. If you are unsure of how to start, just choose something easy. Focus on a piece of fruit or a flower. Imagine that object in your mind. Picture everything about it: the texture, the color, the shape, the smell. Once you are able to keep your mind focused on a simple object without getting distracted, move on to something more complex, like an issue or a re­lationship. You will find it becomes easier the more you do it!


 

Elizabeth (Betsy) Kirchner, CNP, is a board-certified family nurse practitioner and the education and curriculum chair of the Rheumatol­ogy Nurses Society. She has worked at the Cleveland Clinic Foundation since 2000 in the Immunology Department, primarily with Len Calabrese, MD. Betsy provides care for patients with HIV, rheumatoid arthritis, vasculitis, lupus, and psoriatic arthritis, as well as other autoimmune inflammatory diseases. She has published several articles and has spoken at select national and international meetings.

The Rheumatology Nurses Society is a professional organization commit­ted to the development and educa­tion of nurses to benefit its members, patients, family, and community. To learn more visit rnsnurse.org.


 

Reference

  1. Merkes M. Mindfulness-based stress reduc­tion for people with chronic diseases. Australian Journal of Primary Health. 2010;16(3):200-210. doi: 10.1071/PY09063.