Living with a chronic illness certainly poses many challenges that require inner strength, creativity, adaptation, resiliency, and focus to live as fully as possible under new physical, emotional, social, and spiritual circumstances. I referred to some of the issues, values, and approaches that can be helpful on this journey in my last column. Here are some other topics that are also worth considering in this area.
Some aspects of taking care of yourself when you are ill are self-evident:
- Taking your prescribed medications
- Informing your healthcare team if you decide to take over the counter medications, supplements, or herbal preparations
- Keeping your medical appointments
- Reporting to physicians if symptoms change or new ones develop
- Showing up for your prescribed treatments
- Getting enough rest
- Remaining as active as possible
- Physically exercising as best you can
- Eating a balanced diet
- Taking time to enjoy an activity you like
- Taking time to relax and do nothing.
Another important aspect of self-care, though, is finding the right balance when it comes to going about your daily activities. For many people with chronic illness, there are “good days” where you might want to push yourself to do as much as you can to make up for the “bad days” when you might not be able to do much at all. In her insightful and wise book, How to be Sick (Wisdom Publications, 2010), Toni Bernhard, in writing about living with Chronic Fatigue Syndrome, said, “I’ve discovered that wise action lies in finding the middle ground between what we used to be able to do and the alternative of doing nothing….The challenge is to find the ‘middle way,’ the balance between too much and too little…. The key to wise action for the chronically ill, then, is to avoid extremes.” (p.123)
This approach really makes a lot of sense, but it isn’t always easy to implement. It really is a matter of trial and error, experimentation, if you will, to arrive at the right balance. If you try doing too much, perhaps forgetting you may still have some limitations, the result may be increased fatigue or decreased energy or even a flare in your symptoms, such as in a disease such as rheumatoid arthritis where joints may be overused.
But if you don’t do anything, such as sitting around or lying in bed all day, it’s very easy to become deconditioned and also start concentrating only on your disease , perhaps slipping into despair or getting angry because you are so limited. The process of finding the right balance or “middle way” may actually take time to work out. While searching for the solution, remember how you’re trying to take care of yourself in a good way. Have patience with yourself and magnanimous self-acceptance. And finally, isn’t finding this balance in handling your disease also a metaphor for finding balance in life between the extremes of too much and too little?
Living in the Present Moment
Much has been written about the healthy practice of living in the present moment. This approach has certainly been emphasized in the wellness literature, but it applies just as significantly to people living with a chronic illness. One of the most beautiful statements I’ve seen about being in the present moment was made by the Vietnamese Buddhist monk, teacher, and writer Thich Nhat Hanh.
He said, “When we settle into the present moment, we can see beauties and wonders right before our eyes –“(quoted in How to be Sick, p111). We all have such a tendency to go around thinking about what has happened in the past or what we’re anticipating in the future. This mindset particularly applies to people living with a chronic illness. It’s very easy to think about physical and emotional problems and symptoms from earlier phases of a disease and also spend time imagining what may happen to you physically, emotionally, and functionally in the future. This can take you away from what is right before your eyes in the present moment. Something that can indeed be quite wonderful – a smile from someone you pass on the street, a beautiful sunrise, live instrumental music coming from a practicing student’s window, the laughter from children at play, a short, but wonderful conversation with the checkout person at the grocery counter, an unexpected call from an old friend.
It is so important that a person with a chronic illness does not focus constantly on that illness so that awareness of all the potential wonders of the present moment are blocked from his/her perception. Living in the present moment not only increases our awareness of what is happening in our immediate surroundings, but also our awareness of ourselves, our thoughts, emotions, and bodies. Awareness such as this helps us move from the mindset that “we ought to be doing” to “how nice just to be.”
Living in the Present Moment Through Mindfulness Meditation
One of the best practices that can foster one’s awareness of the present moment is mindfulness meditation. Meditation is recognized more and more as way to achieve an inner peace, a sense of calm, insight, balance, diminished stress and tension, and heightened awareness of yourself and your environment and the present moment. All these benefits can be particularly helpful when facing a chronic disease. In addition, from the purely medical viewpoint, meditation has been shown to lower blood pressure, decrease pain, increase immune function, and decrease anxiety and depression.
Jon Kabat-Zinn has written extensively on mindfulness and the particular type of meditation that promotes it, mindfulness meditation.
His book, Full Catastrophe Living, is regarded as a classic in this field. The practice involves sitting with you feet on the floor in a quiet place with no distractions. Close your eyes and focus solely on your breathing.
Thoughts will come and go through your mind. The practice of mindfulness meditation is to notice those thoughts, and then just let them go without dwelling on them, and return to focusing on your breath. It takes a lot of practice, years and years of it, to master this process – it isn’t easy. But the rewards are great.
Sogyal Rinpoche, the Tibetan lama, teacher, and writer, remarks in his book, The Tibetan Book of Living and Dying, that mindfulness meditation can diminish our negativity, difficult emotions, and the possibility of responding aggressively. A mindfulness meditation practice can foster a certain equanimity that allows one to meet life’s ups and downs, highs and lows in a more balanced and calm way. That can be so helpful for someone having to deal with the chronic symptoms of an illness. It can help you be more aware of what you are experiencing, but in a calmer way that might make it easier to let go of the negative aspects.
Finally, there are some other benefits to practicing mindfulness, or awareness, and mindfulness meditation. One of these is developing the ability to step back from your initial reaction to challenging events and respond instead in a calmer way.
This can happen after practicing mindfulness meditation regularly. This approach would certainly help with a chronic illness and new perceived threats or difficult changes. Also, mindfulness meditation encourages you to be more open to see beneath the surface, not only in yourself, but in your connection to others and to the whole world.
It is a very spiritual experience to feel part of something bigger than yourself, and mindfulness meditation, by helping you be aware of your own body, thoughts, and feelings while you are meditating, can then help you be aware of your connection to everything around you – the world and the people in it. With a sense of isolation so common a feeling in people who are chronically ill, a sense of connection can be very healing.
The practice itself of mindfulness meditation, which asks you to let go of all the thoughts and feelings and concerns the mind tries to cling to, encourages you to be patient with yourself and not judge your performance. This can help you be less judgmental of yourself, especially with a chronic illness that results in changes you did not cause. Self-judgment works against one’s own capacity to heal, and the better one is able to let the judgments go, just as one lets thoughts go during mindfulness meditation, the better chance one has of dealing effectively and functioning better with a chronic disease.
And lastly, mindfulness meditation can help give one a perspective. Jon Kabat-Zinn in Full Catastrophe Living comments how we so often miss seeing things the way they really are, because we are so caught up with what we think and believe we already know. Developing a change of perspective can be such a helpful process with a chronic illness. When one steps back from what you experience daily and from what constantly absorbs your thinking, you may develop a new way of looking at your own life and functioning and capabilities and aspirations. You may even want to take your life in a new direction and with a new focus.
Having compassion toward others is a healthy approach toward personal interactions. It involves not only trying to understand what someone else may be suffering, but also trying to relieve that suffering in the other person so that their life may be better.
Acts of compassion can transform the lives of others. What many of us frequently have trouble doing is showing compassion toward ourselves as well. This is particularly true for people who are living with chronic diseases.
Many regard their illnesses as a failure – they did something to cause it or they’re not improving because they’re doing something wrong or not living their lives correctly. It can be very healing to be self-compassionate – to recognize that you are suffering and to wish for yourself that things get better and suffering lessens.
It is also a healing practice to make every effort to lessen your own suffering and make yourself more comfortable. This is not done in the spirit of feeling sorry for yourself. Rather, it is recognizing the difficulty inherent in the physical and emotional suffering of an illness and how it affects you and yet still continuing to love yourself, care about yourself, and treat yourself well.
Toni Bernhard in her book How to be Sick very poignantly shows compassion for herself when she has thoughts about how badly she does not want to be sick or when she recognizes how hard her body is working to feel better (p.58). She even strokes one of her arms with the hand of the other arm in a physical act of self-compassion for her struggle. Self-compassion is a powerful antidote to the negativity that can prevail in the daily life of a chronically ill person.
Bernhard also talks about Tonglen, a Tibetan Buddhist practice that enhances compassion (“Tonglen – Spinning Straw into Gold” in How to be Sick, pgs 97-101). In this practice, “we breathe in the suffering of the world and breathe out whatever kindness, serenity, and compassion we have to give.” (p.97).
One might wonder how does this work? Why do I have to take on more suffering when I already have enough of my own?
But a benefit of this practice is a deep sense of connection with other people who are suffering in the world, some even with the same symptoms you may have. We all long for connection, and Tonglen can help in that process in a very powerful way. Ms Bernhard also points out an added advantage of Tonglen – when you breathe in the suffering of others in the world, you breathe in your own suffering as well, and in breathing out the “kindness, serenity, and compassion” to others, you are also sending those wonderful states to yourself. Part of that compassion is for you. This can have a very calming influence on you and perhaps a possible positive effect on your disease as well. Tonglen is a readily available coping practice in times of stress and despair.
Hope is a crucial part of facing and coping with a chronic medical illness. It can help you survive and also promote healing. Hope can support your moving forward against adversity and give a sense of peace and calm amidst the periodic turbulence that can occur anytime in the course of a chronic disease.
In his book, The Anatomy of Hope, Jerome Groopman, M.D. gives this definition of hope – “Hope can arrive only when you recognize that there are real options and that you have genuine choices. Hope can flourish only when you believe that what you do can make a difference, that your actions can bring a future different from the present. To have hope, then, is to acquire a belief in your ability to have some control over your circumstances. You are no longer entirely at the mercy of forces outside yourself.” (p.26)
Even with a chronic disease that may have no cure, a person may still have hope they might be able to live their life a certain way and achieve meaningful goals. There still may be hope for an unexpected remission or a new treatment that might be effective. Hope itself has also been shown to have beneficial physiologic effects on the body. The positive belief and expectation that are part of hope can stimulate the brain to release endorphins and enkephalins, central nervous system chemicals, leading to pain reduction and also a general sense of well being.
Hope can play a major role in facing the mystery that is a part of any chronic disease. Rachel Naomi Remen, M.D. in her wonderful CD, The Will to Live and Other Mysteries, comments that “Science can’t explain everything. Some things can’t be measured. People can come alive in facing mystery – even with a bad illness.” Dr. Remen also feels that in the presence of mystery, “Life is larger and things are possible and the unknown gives hope a real chance to be present and powerful.” Dr. Groopman also states this viewpoint beautifully when he says, “Each disease is uncertain in its outcome, and within that uncertainty, we find real hope….This is the great paradox of true hope: Because nothing is absolutely determined, there is not only reason to fear, but also reason to hope. And so we must find ways to bridle fear and give greater rein to hope.” (The Anatomy of Hope, pgs 210-211)
It is important, however, that hope be based on realistic goals and facts. If people with chronic disease have unrealistic expectations, it is very likely they will be disappointed and may even refrain from having any further hope for the future. One can achieve reality-based hope and expectations by discussing medical issues with your healthcare team and by reading reliablesources of information on your disease. This framework of knowledge, and the possibilities within that framework, can help the patient be aware of the possible positive outcomes that could happen and the positive ways that one can adjust to and live with circumstances that would most likely not change. Part of the physician’s role it to instill some sense of hope in the patient. In fact, James C. Harris, M.D. and Catherine D. DeAngelis, M.D. in an editorial called “The Power of Hope” in the Journal of the American Medical Association said, “Most importantly, no patient should ever leave a visit with a physician without a sense of hope…An encounter with a patient should leave the patient emotionally more able to deal with his or her illness.” (JAMA Vol 300:2920, 2008)
Finally, it is important to remember that there are many sources of hope for someone with a chronic disease. A person’s belief system is certainly one of them. Faith in a higher power outside of oneself can engender hope and also support some people through difficult times.
Confidence in oneself is another source of hope, particularly if one is motivated to maintain independence and as much control over the medical situation as possible. Embracing the need to maintain one’s dignity can also encourage hope. And finally, a belief and trust in one’s physician and a willingness to work with that physician and the entire healthcare team toward wellness and improvement can lead to the development of hope.
Next month, I’ll continue discussing other issues related to living successfully with a chronic illness.
Donald M. Friedman, M.D.
Spirituality and Healthcare