Rainbow at shoreline

The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard and Sylvia Boorstein, Wisdom Publications (September 14, 2010), 216 pp. ISBN-10: 0861716264. The book is available in paperback and Kindle edition.

Toni Bernhard is a practicing Buddhist and an author with a background in teaching. Ms. Bernhard was a law professor at the University of California-Davis for almost twenty years and served as the dean of students for six years before she had to retire due to illness.

The purpose of this book is to reassure other people who have become ill that despite their illness that they can optimize the life they have.

The book is organized in five main sections.

How everything changed

In the first section, How Everything Changed, Toni Bernhard writes about how she became ill and about when she realized that she was not going to recover. Faced by this challenge, she turned to the teachings of the Buddha to help her learn how to be sick; she had begun her study of Buddhism in the early 1990s. She became ill while on long-awaited trip to Paris in 2001 and before long, she was besieged by gamut of diagnoses: CFS, CFIDS, ME, PVS, VICD, OI, and POTS (acronyms which are readily recognized by our patient community). While the author uses her experiences, insights, and knowledge of Buddhism for coping with illness and associated losses or limits, she states her book is intended to help all of us find peace and well-being despite our circumstances. This book could have been just as easily called "How to Live Life More Fully."

Accepting pain

To better understand how Buddhism helped Ms. Bernhard cope with illness, it is worth taking a quick look at the primary teachings relating to the "three marks of existence" which form the basis of many other practices. These are described as suffering, impermanence, and no-self, which the author discusses in the next section, Accepting Pain.

Suffering is an aspect of our existence and is experienced by all beings. Suffering also applies to circumstances that are unsatisfactory or unpleasant, those that may cause anguish or stress, or result in change or illness. The author describes suffering as bearing life up from underneath (meaning that much of our suffering comes from our inner responses to our life situations) and explains how it is possible to change one's view and approach, which in turn, may ease one's misery. She also points out how someone's relentless quest to avoid suffering may actually generate more suffering.

Impermanence is a concept that regards everything as being transient or in a state of flux. Impermanence is a necessary part of life in order for all living things to grow and develop. Time passes on no matter what happens. The author sums up this concept by saying, "Anything can happen at any time." One of the comparisons given by the author for this teaching is the weather. In life, many situations may arise and then pass by; it is important for people to learn how to take comfort in the calm or brighter moments after the storm.

No-self is a complicated concept that departs from the traditional notion of an individual being a permanent self or soul, with a limited identity, and staying the same throughout their life. In Buddhism, an individual is viewed as the collective result of his or her feelings, perceptions, awareness, and other aspects which continue to change with each experience. The author remarks that, "Experiencing no-self lifts a burden and brings a sense of spaciousness and freedom to everyday life."

Finding joy and love

Ms. Bernhard devotes the segment, Finding Joy and Love, to the principles of "sublime states" which have to do with loving-kindness, compassion, sympathetic joy, and equanimity. When people are able to wish both themselves and others well; reach out to those who are suffering, including themselves; feel joy in the joy of others; and keep a peaceful mind in all circumstances, then their lives become more enriched. The author admits these practices may be very challenging, but over time, people may view their lives more positively and develop a more wholesome attitude. This in turn may help to ease their suffering by the compassion they cultivate for themselves and others. She acknowledges that it is very difficult to maintain composure when dealing with insensitivity, uncertainty, and instability, especially by those with chronic illness. People have a tendency to want to have their desires fulfilled and they often attach themselves to the outcome. If people's happiness depends on their desires, they are much more likely to set themselves up for suffering. When people learn to let go, be more accepting of life as it comes without blaming anything or anyone, and find things to be grateful for, they may cope better with the losses and erratic nature of the illness.

Turnarounds and transformations

The next six chapters, Turnarounds and Transformations, describe strategies which can promote positive change and improvement. Examples of these strategies include becoming more mindful about one's reaction to unpleasant sensations; approaching one's pain and suffering and that of others as a path to compassion; examining thoughts that could cause suffering; living in present moments; avoiding extremes and seeking the middle ground; and exploring Zen.

From isolation to solitude

The last section, From Isolation to Solitude, draws attention to how to communicate wisely and better deal with isolation. The final chapter consists of the author's reflection about her life—that it is perfect, just as it is.

Toni Bernhard effectively communicates her experience of chronic illness on her life—the suffering, many losses and limits and her use of Buddhism as a way to cope with illness and accept her life. Her main message is that people will do better by accepting their illness and develop strategies to live with it rather than deny it. The majority of ME/CFS patients might find it difficult to grasp and follow the many practices and teachings described in the book, depending on the severity of their illness. One advantage the author has is her familiarity with Buddhism which she studied more than nine years prior to the onset of her illness. She also had the good fortune of enjoying a good career and lifestyle prior to becoming ill, which may place her in a more advantageous position than many ME/CFS patients who often live in survival mode, alone and on a fixed income. In these ways, this book is the story of Ms. Bernhard's life and her experience with illness with the knowledge and options available to her.

In conclusion, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers may encourage patients to rethink their lives and learn ways not to become entrenched in a "sick person" identity. A few recurring concepts in the book such as a person's ability to live, let go and accept shortcomings in his or her life without regret or blame and maintain a peaceful mind at all times may illustrate the potential of the teachings and techniques of Buddhism over a period of time.

Some readers may find the philosophy of Buddhism contradictory to their existing beliefs and traditions and might find it difficult to really connect with the teachings. How easy and helpful this book will be across-the-board may greatly vary among patients, but it's worth exploring to best of one's abilities.

Live, learn, reset your GPS

by R. Sanderson

The reason I had turned to Toni Bernhard's book, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, was to gain new insight and ideas on how to best live with several chronic illnesses. I have now surpassed the 25 year point with ME/CFS and felt it was time to review my situation, perhaps forge a new path. I would describe the following as the 15 best take-away messages from Ms. Bernhard's book:

• concentrate on what you can do and not on what you have lost or cannot do
• separate yourself, the "I" from the sickness in your body
• don't blame yourself for having become ill
• try to be more kind and friendly towards yourself and others
• try to respond more compassionately to your pain and suffering
• don't dwell on how you wish things would be, but rather accept them "as they are"
• consider that your desire for things to be other than they are is linked to stressful thoughts
• follow positive thoughts and try not to invest feelings on negative or unknown thoughts/situations
• keep your responses simple to others instead of trying to explain/justify your reasons for doing so (linked to more stress)
• learn to speak wisely as well as recognize when to be silent, don't engage in divisive speech
• accept life as it comes, without blaming anything or anyone
• learn to let go, as little or as much as possible, in order to achieve more peace in your life
• try to distract yourself by pleasant/pleasurable things when in pain, focus on your breath and let thoughts go by (meditation)
• live in the present moment (practice mindfulness)
• be realistic about your potential for health, acknowledge there may not be answers to all your problems, don't be attached to the outcome

However, it was an article posted a few months ago, "Is It Time To Give Up Trying Pt. II: Breaking the Addiction for a Cure" by Carol Lefelt, on one of the popular ME/CFS blogs that raised questions about when to stop fighting our illness and pursuing that illusive cure. For as long as I've had ME/CFS, I can remember countless theories, good and bad treatment recommendations, controversies and setbacks, some promising studies but also many disappointments. During much of this time, I have been actively involved in educational programs and advocacy campaigns. But things are starting to change, as they do in everyone's life. I've grown, I've aged, I don't have the same endurance and vigor as 25 years ago.

As I am now in my sixties, I really have not made any great strides in my personal health. I also notice that I am not getting as excited nor driven to sign up for another adventure, much like "The Raiders of the Lost Ark", to chase after another study or protocol. At first I thought it was just me, perhaps I was becoming a little indifferent or selfish, as I become older. Then it dawned on me, "With age comes wisdom, but sometimes age comes alone" (Oscar Wilde).

I thought about what Ms. Lefelt had written in her article that when medical science does not provide the remedy and answers, then our hope should come from something else. She describes that option as the "healing" that is possible from a transformative process of our physical, emotional, spiritual and psychological self. Her article shared many sentiments by other mature individuals living with chronic illness which I could really relate to, such as making the best of what they have, accepting where they are, and being able to experience pleasurable moments, particularly when someone is not trying or wishing to for things be different than they are. Many of the views expressed by those individuals seemed to echo some of the concepts in Toni Bernhard's book—for accuracy's sake, I need to state that I don't know whether any of these ME/CFS patients had read Ms. Bernhard's book or if their views had any connection to her material.

Nevertheless, I could see a common thread in their views and approach and it started to make more sense to me as to why I began to organically feel different and compelled to stop and check where I was heading. I see that I need to create a new roadmap for where I am in my life right now—correction, reset my GPS. I consider the article and Toni Bernhard's book as travel guides which will hopefully point me in the right direction.

Read the book review, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers.

Updated Medicare and Massachusetts Health Insurance Benefits under the Affordable Care Act

With the present implementation of the federal Affordable Care Act (the new federal health care law), it is useful to review and update some of the eligibility requirements for medical benefits under Medicare and, in Massachusetts, for Medicaid and the Health Care Safety Net.

Read more: Updated Medicare and Massachusetts Health Insurance Benefits under the Affordable Care Act


Notice about names

The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS. 

Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.