‘Tis the season of New Year’s Resolutions.  People make them, and frequently they break them.  Many resolutions center around the same general principles:  working harder and accomplishing more.  For perfectionists, New Year’s resolutions are about being more perfect.  They are appealing and natural, especially to those of us whose self-esteem is intertwined with our sense of achievement.  Many people with Chronic Fatigue Syndrome, Fibromyalgia, and other chronic illnesses recognize themselves in this category:  we often measure our worth in the currency of how much we do.  Yet the typical goals declared on January 1st of each year may be more unrealistic than ever.

In his book, Don’t Just Do Something, Sit There, Richard Eyre explains how some of the traditional wisdom about self-improvement is outdated or inaccurate.  He argues that we need new paradigms to “reflect our world as it really is, and our lifestyles as they really ought to be.”  This is particularly true for people who are debilitated by chronic illness.  Perhaps we need to rethink these annual goals and look to the New Year with a spirit of “Anti-Resolutions”—that is, to release ourselves from the obligation of things we are not able to do and consider alternatives more supportive of healing and well-being.

Let’s look at some typical January 1st declarations and how they might be transformed to better fit the lives of people with Chronic Fatigue Syndrome or other chronic illness:

I will exercise for one hour every day, no matter how I feel.

→ I will listen to my body, avoiding exercise that results in a worsening of my symptoms.

I will wake up an hour earlier each morning.

→ I will try to rest an hour each day.

I will work harder to get that promotion this year.

→ I will acknowledge my health is more important than that promotion this year.

I will manage my time so that I can do more.

→ I will pace myself to allow for rest and recovery.

I will be more generous to others with my time and energy.

→ I will be more protective of my time and energy in order to take better care of myself.

I will return phone calls promptly.

→ I will answer the phone less frequently.

I will accomplish all the items on my To-Do List.

→ I will eliminate most of the items on my To-Do List.

The “transformed” list of resolutions may look quite different from the traditional one.  But is it any less important?  And is it any less challenging?  It’s funny how determination and will power can be so difficult to apply to the goal of doing less, instead of doing more.  We may know how to commit ourselves to goals and work to achieve them, but can we have similar determination to rest and to heal?  Can our will power be devoted to “letting go”?  Perhaps the New Year is a time to re-focus ourselves less on doing, and more on being.

Consider making your own such list of  “anti-resolutions” that focus not on getting things done, but on improving your health and quality of life.  Or you may not want to make any resolutions at all.  This year, the most empowering declaration for us might be that we will make no resolutions, set no quantified goals, and rely on no concrete measures of success.  Instead, we can open our bodies and minds to be healed and open our hearts to contentment and peace.

Healing requires no resolutions—it requires only that we live each day the best way we know how, listening to our bodies, and nurturing our souls.  Even if we abandon every resolution we’ve ever made, perhaps we will start to experience the healing value of letting go.

I haven’t been online much recently, as I’m struggling to gain my bearings in a world that seems relentlessly unpredictable, sometimes tragically so.  In just the last couple of weeks, I’ve struggled to wrap my mind around 70 people being shot at the movies, the shocking illness and death of one of my family members, and all the other sudden impacts that alter people’s lives forever. How does the sun keep shining as if nothing has happened?   These unexpected blows rekindle the pain of past losses and future fears, those I thought I had sufficiently vanquished.

And yet.  The tragedies in the world (and in my life) are often juxtaposed with little triumphs.   Co-existing with disaster are moments of beauty, unexpected acts of kindness, and expressions of love.  There are surges of helplessness, followed by bursts of inspiration and gratitude.  My uncle passes away suddenly, and yet his grandchild is being born days later.  Somehow, life springs forth in the shadow of death.  Possibility enters in the face of loss.  Human connection saves us when we thought we were alone.

Stephanie Meyer wrote, “Perhaps there could be no joy on this planet without an equal weight of pain to balance it out on some unknown scale.”  Or perhaps it is just our burden—and our gift—to live with it all as it comes, learning what we can, and leaning on each other.

The scientific concept of inertia refers to the resistance of an object to a change in its state of motion or rest. I’ve been thinking about how the inertia in our lives is often so difficult to overcome.

Life can be hard.  Our daily struggles and strains can put us in a kind of survival mode. Sometimes it feels like we’re standing with our toes dug into the sand, desperately trying to remain upright against the waves that are crashing all around us.  When life feels overwhelming, the desire to avoid new things—difficult things, scary things—can usurp our curiosity, our confidence, and our courage.  Add to that the pressure to constantly change and improve ourselves on a grand scale. “Think Big!” and “Change Your Life!” are common battle-cries in our fast-moving, super-sized culture.

Small steps can help us resist this all-or-nothing paradigm and overcome the inertia that makes us either move too fast and expect too much, or avoid taking a step at all.  Simplicity blogger and author Leo Babauta emphasizes how tiny steps can be the most powerful way to make changes or add joy to your life.  He argues, “You don’t need to fix everything in your life right now. You don’t even need to fix one thing. You just need to do one little, miniscule, almost nothing thing.”

Taking even small actions can help us feel more in control of our lives and how we respond to our circumstances. Some steps might be practical, such as a small change in something you eat that makes you feel healthier. Other steps could help you find a new source of delight, like learning a new skill or discovering a simple pleasure.

I’ve known people with severe illness who in the midst of their suffering have founded organizations, learned the craft of poetry, started a journal, developed skill in jewelry-making, discovered an appreciation of fine art, or simply learned to use Facebook.  Learning new things produces feelings of satisfaction and confidence that are even more essential for those of us who have suffered so many losses due to illness.

We may tell ourselves: when I feel better, or when life calms down, I will begin.  Or we may ask: why bother starting if I won’t have the time or energy to accomplish my goals?  Thank those voices for their input, and then take a step anyway.

Take a class. Meditate for a minute. Write one sentence. Read a single chapter. Try a new food.   As we practice small steps, over time we may look up and realize we’ve arrived somewhere we always wanted to go.  No matter the destination or whether we ever get there, the living takes place in the steps on the path, the joy in the sights along the way.

Speed doesn’t matter.  Slow progress is still…well, progress.  Taking each step reassures us that we’re still living, still moving toward our heart’s desire—whether it be a long-term goal or a short-lived pleasure. A friend recently shared with me that her doctor would always tell her, “remember, the turtle won the race.”

What would you learn or try if you had the time or the energy?  Although life circumstances are real and may feel like overwhelming obstacles, there is probably one small step you could take. Each step is something to celebrate, and it just might encourage you to take the next.

And if you need inspiration to take a step, listening to this song might help. (Just click the little arrow below.) 

*Song by Diana Lorden, from Fighting Gravity (used with permission)

Recently I attended a gathering in Los Angeles presented by the CFIDS Association of America (CAA) called “Catalyst Café.”  Having just begun a new blog after several years of not being in close contact with the CFS community, I was anxious to re-connect and learn about new advances in the field.  I assumed the event would include a presentation by Kim McCleary, President and CEO, and Suzanne Vernon, Ph.D., Scientific Director (each of whom I had never met before); but beyond that, I had no idea what to expect.

The event was held at a private home in the hills, and when I arrived people were mingling.  I looked around and wondered whether the people I saw were donors, medical professionals, or CFS patients like me.  I suspected there weren’t many patients because people “looked healthy!”  It turned out that most of the attendees were, in fact, CFS sufferers—many of whom had been sick for more than a decade.  My perception—as I learned later from talking with other patients—was wrong, which only served to emphasize how invisible our illness really is, even to those of us who are well aware of it.

As everyone settled into seats, the presentation opened with a very moving video that asked people with CFS the question, “What would you do if you were completely well tomorrow?”  As I watched it, unexpected tears began to well up in my eyes.  It affected me so strongly that it was all I could do to muster the composure to focus on the rest of the presentation.

The flickering of hope

It’s difficult to describe what I felt as I listened to Kim and Suzanne speak about the lives destroyed and pain endured by CFS sufferers and their families. I’ve spent so much time trying to hide, tolerate, minimize, live with, and adapt to chronic fatigue syndrome and fibromyalgia (FM), it has become like a familiar drumbeat of hopelessness that is always there in the background.  Life goes on, other people don’t really understand, and despite my best efforts, I surrender to the reality of “the way things are.”

I like to think of myself as an optimistic person.  But without being fully conscious of it, somewhere along the line I had become resigned to a belief that treatment for CFS/FM won’t really change in my lifetime. Without a diagnostic marker, and with debates about whether the illness is “real” still in the media, I saw no signs of improved medical care on the horizon, let alone a cure.  My focus has been on coping with CFS/FM and learning to live a meaningful life in spite of illness.  But what if things could change?  What if there was a new way to approach the research and treatment of this illness?  I’m excited by what is going on at the CFIDS Association and what could emerge that has the potential to affect all of our lives.  My goal in writing this is to share some of the hope I felt with everyone who didn’t have the opportunity to be there that day.

What’s so different about the new research initiatives?

The CFIDS Association is striving to transform research by breaking out of the conventional model and shifting from passive research partners into active collaborators.  The goal is to build a critical mass of rigorous research that defines the biological basis for CFS and leads to improved methods of diagnosis and treatment.  The Association’s latest initiative, the Research Institute Without Walls (RIWW) is a uniquely collaborative approach that encourages studies to build on one another. Key aspects of the Association’s program include:

•  An “army of volunteers”

The CAA is building the SolveCFS BioBank, a patient registry and depository that collects and stores clinical data and biological samples of CFS patients and healthy controls.  Instead of researchers having to start from scratch to identify and recruit study participants, they can call upon the BioBank to mobilize a group of pre-enlisted individuals who are committed to furthering CFS research.

•  Communication and integration

In traditional research practice, scientists in different institutions and geographical regions tend not to communicate with each other, particularly across scientific disciplines.  In the Research Institute Without Walls (RIWW), researchers are networked and integrated to ensure collaboration and a constant exchange of ideas.

•  Data accessibility and control

Conventional research models don’t necessarily require building a centralized base of knowledge, and as a result, scientific data from past studies is not easily accessible and transferable. The data from one study “goes away” when a different study is begun.  Now the CAA can maintain access to data collected over time, rather than rely upon “one-and-done” studies that don’t integrate and build on each other.

A New Paradigm

According to Suzanne Vernon, the pipeline for bringing a new drug from discovery to market is at least ten to fifteen years, at a typical cost of 80 million dollars.  The CAA’s more nimble approach is innovative in that it leverages smaller funds to yield greater scientific returns in a quicker timeframe.  The result, says Suzanne, could be “increased efficiency and cost effectiveness by orders of magnitude.”

It is clear that a paradigm shift is needed in how we research and treat disease—not just CFS, but a host of other illnesses too. The Association has joined other organizations on the cutting edge of medical research who are changing the way research is conducted. As Dr. Vernon said in her presentation, “This is a movement that is going to be infectious for a lot of people…in a good way!”

What about Fibromyalgia?

Chronic fatigue syndrome (CFS) and fibromyalgia (FM) are overlapping illnesses that frequently occur together.  Studies have estimated that as many as 70% of CFS patients also have fibromyalgia, reinforcing the belief that there might be a common pathophysiology in the two conditions. As Kim McCleary points out, “the ‘label’ that individuals identify with—whether it’s FM or CFS—often depends more on the doctor that diagnoses them” than on anything else.  The kind of research being done by the CFIDS Association has the potential to benefit CFS and FM patients alike.  In fact, many of the CAA-funded studies include FM patients, either as a separate sub-group or a co-existing diagnosis.

We are not alone

As Kim and Suzanne presented their vision with such heartfelt passion, their enthusiasm was palpable. It felt a bit surreal to hear them validate and give voice to the things I had become used to minimizing and denying in my own mind.  As I let the words seep into my heart and mind, where there had been doubt, I felt hope.  Where there was disillusionment, I felt inspiration.  Most of all, I had the powerful sense that I was not alone.

What has always struck me as ironic is that many of the people who work to improve the lives of CFS/FM sufferers are sufferers themselves.  Burning this candle at both ends, we get exhausted, become sicker, or simply can’t sustain the energy and resources we need because ours are already so limited by CFS/FM.  To see two people who aren’t sick bring all their healthy energy and vitality to this cause was a revelation that elevated my spirits.  It lifted the burden of feeling that we have to do it all ourselves, with no one to help us.

However, the CAA’s sharpened focus on research has left a gap in the area of patient support, which both women expressed concern about when I spoke with them afterward.  I believe that’s where we come in. We can reach out and lift each other up.  We can support the efforts of those who are working to make change.  We can strive to increase awareness of the devastating consequences of this illness—and the great strength and courage of the people who battle it every day.  We can do all these things, until there is a cure.

What else can we do to help?

1. Consider applying to be part of the biobank.

Extensive information is provided on the Association’s SolveCFS website. They need healthy controls and family members of CFS patients, too, so this could be another way to engage our loved ones and encourage them to have a stake in CFS.

2.  Donate what you can.  Ask friends and family to donate.

Keep in mind that every little bit helps.  After the presentation, Suzanne told me, “One woman at the event was so jazzed she said she is increasing her monthly donation from $5 to $6.  She acknowledged that it wasn’t much, but that was all she could do.  It about made me cry.”

3.  Spread the word and increase awareness of CFS and fibromyalgia.

The CAA provides some excellent downloadable resources to share with others, including the video mentioned above or the helpful factsheet, “For Those Who Care.”

4.  Get everyone involved.

Even those who are not necessarily comfortable “going public” about CFS can still be part of an extraordinary research effort that has the potential to change the practice of medicine on a broad scale.

5.  Attend a Catalyst Café event.

If you want to get on the invitation list for an event that may be coming to your area, sign up for the monthly Catalysts in Action newsletter by sending an email with “SUBSCRIBE” in the subject line.

My experience at this event affected me in a deep way and on a variety of levels. For me, the CAA’s vision and enthusiasm really was “infectious.”  Imagining advances that would change the course of CFS/FM—in our lifetime—was a new experience.  Suddenly, in that moment, it didn’t seem impossible to me.  What made the difference was the realization that perhaps we—those suffering with this illness—don’t have to carry the torch ourselves all the time.  We are in this together.  There are those who are working to help us, in ways that we can’t always help ourselves. Perhaps that in itself can be a catalyst for hope.

Now and then I stumble upon a poem or a quote that reaches out and grabs my heart. Perhaps it’s something I wish I wrote myself, but more likely it’s what I needed to hear or something I yearned to have expressed in just this way.  Today, it was this poem by John O’Donohue.

For A New Beginning

In out-of-the-way places of the heart,
Where your thoughts never think to wander,
This beginning has been quietly forming,
Waiting until you were ready to emerge.

For a long time it has watched your desire,
Feeling the emptiness growing inside you,
Noticing how you willed yourself on,
Still unable to leave what you had outgrown.

It watched you play with the seduction of safety
And the gray promises that sameness whispered,
Heard the waves of turmoil rise and relent,
Wondered would you always live like this.

Then the delight, when your courage kindled,
And out you stepped onto new ground,
Your eyes young again with energy and dream,
A path of plenitude opening before you.

Though your destination is not yet clear
You can trust the promise of this opening;
Unfurl yourself into the grace of beginning
That is at one with your life’s desire.

Awaken your spirit to adventure;
Hold nothing back, learn to find ease in risk;
Soon you will be home in a new rhythm,
For your soul senses the world that awaits you.

-fromTo Bless the Space Between Us: A Book of Blessings
(Copyright © John O’Donohue. All rights reserved)

As I officially “launch” this blog–a move that feels huge to me and yet may be imperceptible to the outside world, I step out and reclaim a piece of myself that has been unattended for a long time.  It is truly an opening of sorts–an unfurling, and a beginning–undertaken without knowing exactly where it will lead.  As Julia Cameron wrote, “All of it begins at the beginning, with the first small and scary step.”

I never thought I would have to begin again.  ”I’ve already done that,” the child inside me protested! For years I had written about my struggles and the insights gained through the challenges of my experience with chronic illness.  I even thought I had found my calling in helping others on a similar journey.  It seemed to all make sense–I could find meaning and purpose in the challenges I had overcome, the lessons I had learned.  And then…

Life intervened, reminding me that the path was never a straight line.  I discovered that the illness that changed my life so drastically was not the most difficult challenge I would face.  For a time, I seemed to lose my way.  I questioned what I thought I knew.  I lost track of the identity and passion that I had embraced with such relief and profound sense of clarity.  As much as I wanted my life story to have an arc that I could understand–a beginning, a middle, and an end–I have come to realize (again and again!) that life doesn’t work that way.  What I’ve learned is that the greatest strength we can bring to any adversity that befalls us is the willingness to begin again.  We can listen to the still small voice and the unattended dreams that live inside our hearts.  We can muster the courage to take one step toward letting a new self emerge.

What is the beginning that is “quietly forming” in your heart?

Understanding is the first step to acceptance, and only with acceptance can there be recovery. –J.K. Rowling

The issue of recovery is a tricky one  for an illness like Chronic Fatigue Syndrome (CFS) or Fibromyalgia (FM).  The varying interpretations on the meaning of recovery in CFS/FM can be problematic, and the scientific research on the course of these illnesses is limited.

Regardless of whether a complete abatement of the illness is achieved, patients seem to report almost universally that learning to listen to their bodies and recognize their limits helps them to manage and cope with symptoms.

The Anatomy of Recovery: Hope and Acceptance

The fact that adapting to the limitations of CFS/FM can promote “recovery” certainly does not imply that FM is “all in your head” or that patients can recover simply by changing their attitudes and/or their behavior. However, patients need to know that the fact that there is currently no cure for FM doesn’t leave them completely powerless in improving their quality of life.

An essential part of any journey toward recovery is hope.  According to Webster’s dictionary, to hope is “to desire with expectation or with belief in the possibility or prospect of obtaining.” While most CFS/FM patients have experienced feelings of hopelessness and frustration with the lack of a cure for CFS/FM, hope can flourish when you believe that there are things you can do to improve your situation.

Bruce Campbell, Ph.D., a CFS patient who considers himself recovered, is the creator of the CFIDS/Fibromyalgia Self-Help Program, a non-profit organization offering online self-help classes. Before becoming ill, Dr. Campbell worked on self-help programs for chronic illness at the Stanford University Medical School. His approach to his own recovery—and that taught in his program—combines two concepts he says might seem incompatible at first glance: acceptance and hope.  Says Campbell, “I acknowledged that my life had changed for an extended period of time and perhaps permanently….I accepted that my focus would have to be on adapting to those limits…[but] at the same time I had hope.  I was confident that through changing my daily habits and routines I could find things to help me feel better.”

While we all hope for a cure for FM in the future, it is reasonable to expect that for now we must find other solutions and ways of coping.  Medications and self-help strategies may not cure FM, but they can help reduce pain and discomfort, bring about greater stability and improved functionality, and decrease suffering.  Knowing that we are not powerless, while maintaining a sense of acceptance and willingness to adapt—perhaps over and over again with changing circumstances—can bring empowerment and hope for the future.

Recovery is about learning that you have a choice:  You can choose to be hopeful rather than hopeless: you can choose to act from faith rather than react from fear; and you can choose to enjoy life rather than merely survive it.

–Donna Newman

FM/CFS patient advocates are quick to point out that these efforts to adapt to difficult life circumstances do not negate the need for a medical solution for these illnesses. Tamara Liller, President of the National Fibromyalgia Partnership, points out that striving to make the most of our lives despite a debilitating illness does not imply that we are complacent or apathetic about the possibility of “a real cure.” Ms. Liller suggests, “Not only is there room for hope, there is also good reason to continue holding policymakers’ feet to the fire and insisting on substantive research on FM/CFS as well as adequate health and social services for patients and their families.”

In the meantime, while we all work toward a cure we can also empower ourselves on the road to our own recovery.  Waiting for a cure doesn’t mean that we must wait before beginning to live meaningful and fulfilling lives.

Regaining a Good Life

Unfortunately, there is no prescription or recipe for recovery that every CFS/FM patient can follow with a guarantee of regaining quality of life.  The paths to “recovery”—however one defines it—are many and varied, and they are full of bumps and pitfalls along the way.  However, it is probably safe to say that anyone who has achieved some degree of recovery hasn’t done so without significant change—whether it be changes in lifestyle, diet, self-care, activity level, spiritually, or even emotional state.

The scientific literature seems to support the idea that recovery through adaptation can improve perceived quality of life.  In addition to the studies cited above, which indicated that patients perceive “improvement” despite continuing symptoms, a study investigating the impact of CFS/FM on the daily lives of women in two countries–the U.S. and Sweden (Henriksson, C. & Burckhardt, C., 1996)–appears to support this idea as well.  The majority of the employed patients in the Swedish group had reduced their working hours to fit their perceived capacity, while the American group continued to work primarily full-time.  Those who reduced their working time were less exhausted during leisure hours and reported higher satisfaction with daily activities.

However, learning to live well with CFS/FM doesn’t just mean doing less; often it means doing it differently.  It’s an essential process of developing meaning in your experience and recreating a sense of yourself and your life. Living with a chronic illness like FM allows us to clarify our priorities and redefine our values.  Respect for the journey and who we have become brings meaning to our suffering.  In her article, “What Recovery Means to Me,” CFS sufferer JoWynn Johns writes, “Gradually, I came to accept the idea that perhaps I never could go back to my old life.  I began to let go of my goal of recovery as I had understood it, and to replace it with the idea of restoring quality of life through building a different kind of life than the one I had known before CFS.”

For those with CFS/FM, the process of recovery is, indeed, a process of regaining and restoring—not the old life, but a good life.  Through this process we can discover a different kind of fulfillment in our lives, even if we are not able to do all the things we did before.  Says Johns, “While it is not the life I once had, I have recovered a satisfying life, a 100% enjoyable life.”

Dr. William Anthony’s work in the mental health field crystallized a definition of recovery that seems particularly applicable to chronic physical illness as well.  He describes recovery as “a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with limitations caused by the illness” (Anthony 1993).

Whatever recovery means for you, may you find hope and help on your journey.

The medical model of illness tends to define “recovery” in very black-and-white terms.  It implies a cure, or an elimination of symptoms, in which patients return to their pre-disease (or “pre-morbid,” as it is referred to in the medical literature) state.

When it comes to a chronic illness like Fibromyalgia (FM) or Chronic Fatigue Syndrome (CFS), the issue of recovery is much more complex.  Patients who are diagnosed with an illness for which there is no cure may be susceptible to feelings of hopelessness or despair.  How can someone recover from an incurable illness?  Yet there are many ways to conceptualize recovery that don’t depend on a cure.  While the search for a cure focuses on the illness, recovery focuses on the patient.

The varying perceptions and interpretations of “recovery” and the paucity of research data makes the concept a confusing one for those seeking answers to questions about their prognosis.  Even the variety of terms used to denote recovery and/or symptom exacerbation, such as remission, relapse, flare, etc.—none of which are consistently defined in the literature—reflects this ambiguity. In the fibromyalgia literature, the concept of recovery is explored more in terms of function than pathology.  Treatment interventions that reduce pain and enhance functioning can help patients recover important capabilities, even without being “cured.”

There is very little research data on the clinical course of CFS/FM, aside from the often conflicting studies that measure efficacies of various treatments.  The few studies that do exist indicate that patients seem to remain stable or improve over time.  For example, a longitudinal study undertaken to explore fibromyalgia outcomes with standard medical care revealed that after 3 years, 47% of subjects reported overall moderate to marked improvement, while the other 53% reported either slight improvement, no change, or deterioration (Fitzcharles, Costa, & Poyhia, 2003).

Researchers have noted the possibility that improvement seen over time could potentially be attributed to patients’ improved coping skills, rather than an amelioration of the symptoms themselves.  For example, a six-year prospective study of a group of FM patients revealed that participants’ initial symptoms persisted six years later (Baumgartner, Finckh, Cedraschi, & Vischer, 2002).  Specifically, pain had actually increased, but patients’ evaluation of their overall health and other measures of quality of life had improved.  The researchers concluded that while the FM symptoms persisted without improvement, the patients appeared better able to cope with them.

Another longitudinal study (Wolfe et al., 1997), in which participants responded to comprehensive questionnaires every 6 months for a period of nearly 8 years, revealed a similar pattern.  Measures of pain, fatigue, sleep disturbance, and other indicators were markedly abnormal at the beginning of the study and remained largely unchanged over the study period.  Yet it was interesting to note that while functional disability had worsened slightly over the study period, health satisfaction improved slightly.  Again, this may reflect an improvement in coping skills.

Absence of Illness vs. Adaptation to Illness?

Dr. David Bell, a well-known CFS/FM clinician and researcher, speculated on this paradox between symptoms and perceived wellness in his lecture at a recent conference hosted by The Organization for Fatigue and Fibromyalgia Education and Research (O.F.F.E.R) in Salt Lake City.  As a pediatrician he evaluated and treated a large number of children with CFS following a 1985 “outbreak” of CFS inLyndonville, NY (where his practice is located). It is not known what triggered this cluster of CFS cases; however, there have been similar outbreaks documented over the years in other parts of the country and abroad.  Of the 230 people who became ill in Lyndonville, 60 of them were children.

Bell conducted a 13-year follow-up study of the 46 children and adolescents he had seen between 1984 and 1987, which was published in the Journal of Pediatrics (2001).  Of the 35 who responded, 37% considered themselves resolved of illness at follow-up, 43% considered themselves well but not resolved, 11% considered themselves chronically ill, and 9% considered themselves more ill than during the early years of illness.  Interestingly, despite these seemingly positive outcomes, more specific questions about symptoms and activity limitations revealed otherwise.  The study utilized an instrument that has been well-documented in the medical literature, The Medical Outcomes Study Short Form Health Survey (SF-36).  The results on this measure indicated that the majority of participants were still struggling with significant symptoms.  In fact, four subjects stated that they had experienced a “complete resolution of symptoms,” but even these individuals noted moderate to severe symptoms on the SF-36.

How should this inconsistency be interpreted?  “Is this adaptation by denial,” proposed Dr. Bell, “and is this a healthy denial?”  Dr. Bell pointed out that recovery in CFS might be more appropriately defined as the adaptation to a disease state, rather than the absence of a disease state.  He suggested that the same might be true of fibromyalgia, since the illnesses seem to overlap in so many ways.  Said Dr. Bell, “One of the central aspects of the definition of CFS and possibly FM is that reduced energy levels seem to …be precipitated by [over-] exertion.  It’s possible that perceived recovery occurs when patients learn not to exceed that level that causes relapse.”

In fact, the self-help literature on CFS/FM abounds with strategies for managing symptoms, working within reduced energy levels, and coping with stress.  Patients seem to report almost universally that learning to listen to their bodies and recognize their limits helps them to manage and cope with symptoms.

The book is thoroughly researched and extremely well-organized, covering every aspect of living with chronic illness.  Chapter topics include: the search for a diagnosis, finding a health care partner, dealing with emotions and doubts, searching for treatments, discovering ways to feel better, managing relationships, and changing the way we look at work.  Each chapter is divided into sub-headings, and the writing is clear and concise, making it easy to follow whether you read it from cover to cover or use it as a reference for locating information on specific topics.  The meticulous organization of each chapter is provided by an author who clearly knows the frustration of mental fogginess that often accompanies chronic illness.  It also makes it a pleasure to read and a good reference text for health care practitioners who seek information that will enable them to better help their patients.

As a professional writer and editor for more than 20 years, Susan Milstrey Wells not only incorporates skilled writing, but frequently cites appropriate research to support her statements.  She quotes a variety of researchers and writers of books on Chronic Fatigue Syndrome, Fibromyalgia, and other chronic illnesses, as well as her extensive interviews with individuals.  The book contains historical and medical information for the curious intellectual, as well as quiet reassurance for the heart.  I smiled, giggled, and mostly nodded with recognition at her vivid descriptions of the various struggles of living with illness.

The author writes with the scholarly authority of one who has thoroughly researched her subject.  More importantly, she demonstrates the heartfelt understanding that only someone who has struggled with her own health could have.  It is no surprise that her treatment of each topic is “balanced.”  For example, she delicately walks the tightrope of the debate over conventional versus alternative medicine.  She contributes information on both sides of the issue, aiming to provide a “discussion [that] will at least be reasoned, if not conclusive.”  She encourages readers to discover their own opinions about what works for them.

The author’s perspective is ultimately hopeful and inspiring, as evidenced by her concluding chapter, “The Gift of Chronic Illness.”  This book is not the work of a Pollyanna who says you can heal yourself through positive thinking.  Rather, it is the acknowledgment of a journey through extraordinary challenges, even bitterness and despair, along with a variety of tools for creating a hopeful future.  I highly recommend you read this book, and I believe it will be a treasured volume on your shelf that you will refer to frequently.  As the author writes, “May you find your own delicate balance.”

The Search for Meaning

While research has revealed a variety of skills and characteristics that are factors in resilience, most experts agree that one of the most essential components of resilience is the ability to find meaning in life, and often in one’s suffering. We all have encountered people who see themselves as victims of whatever befalls them in life and seem to find no value in living through difficult times.  Resilient people, in contrast, have the ability to find meaning in their suffering, and in so doing they can create a better future.

Victor E. Frankl, an internationally renowned psychiatrist and author of the celebrated book, Man’s Search for Meaning, pioneered a psychotherapy technique called “logotherapy” based on his own experiences in Nazi concentration camps.  Logotherapy is literally translated as therapy through meaning and emphasizes human beings’ search for meaning in the face of suffering. Perhaps no one is a better model than Frankl of human resilience and the will to find meaning in even the most unspeakable suffering.

In fact, Frankl’s book is one of the most influential works in the psychology literature, and much of what is called “resilience training” today is based on Frankl’s theory, teaching people to construct meaning in their lives.  Frankl recalls the men in the concentration camps “who walked through the huts comforting others, giving away their last piece of bread.”  He wrote, “they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way…”

Frankl’s work and resilience theory in general teach us that we can find meaning in life even as we confront problems like chronic illness that don’t have ultimate solutions—that is, “when facing a fate that cannot be changed.”   Being resilient doesn’t mean that one is hardened against stress or does not experience anguish and despair.  Rather, a resilient person learns to bend without breaking and finds the strength to adapt to new challenges.

In her Harvard Business Review article, Coutu called resilience “one of the great puzzles of human nature, like creativity or the religious instinct.”  Indeed, a recurring theme in the research literature is that resilience is complex.  According to Brooks and Goldstein, it is not something that can be discovered or attained like a “fountain of youth.”  They emphasize that the process of building and maintaining the characteristics of resilience requires ongoing dedication.  The authors point out, however, that these characteristics are tangible and within reach. “The more you are aware of the features that nurture resilience,” they write, “…the better prepared you will be to promote resilience and stress hardiness in yourself.”

Other experts agree.  The American Psychological Association (APA) offers a publication on the topic of resilience, which states, “Resilience is not a trait that people either have or do not have. It involves behaviors, thoughts, and actions that can be learned and developed in anyone.”  By learning ways to build resilience, sufferers of chronic illness may be able to improve the quality of our lives.

Joanna Wasmuth, founder of Harmony Coaching Group and a fibromyalgia sufferer,  is a speaker, author, and life coach who teaches people to thrive in spite of chronic pain.  “I have learned the anatomy of a comeback,” she said in a recent interview, “over and over and over.”  Wasmuth emphasized that resilience is something that can be learned.  “I think of resilience as a muscle,” she said.  “When you go to work out, it hurts the first couple of times and you can’t really do that much with it. But as you work out more and more, it gets stronger and stronger.”

Richard Davidson, Ph.D., professor and director of the Laboratory for Affective Neuroscience at the University of Wisconsin-Madison, explains that one way people can “train the brain” to be more resilient is through the use of meditation.  His research focuses on neuroplasticity, the capacity of the brain to develop and change throughout life.  He became best known for his work demonstrating meditation’s direct impact on the structure and function of the brain.  Says Davidson, “Meditation probably doesn’t calm emotions per se but is likely to facilitate more rapid recovery following a negative event.”  In one study (Davidson et al., 2003), 25 subjects were enrolled in an eight-week meditation training program and compared to a control group.  Measurements of electrical activity in the brains of both groups revealed increased activation in the brains of the meditation group, in the area of the brain typically associated with positive affect and resilience.  Says Davidson, “These are individuals who, when adversity occurs, will recover more quickly.”

More research is needed to fully understand how all the facets of resilience come together.  Couto noted that resilient people often don’t seem to have an awareness of this quality in themselves.  “Resilience is a reflex,” she writes, “a way of facing and understanding the world that is deeply etched into a person’s mind and soul.”

No matter how resilience is defined or the exact mechanism by which it works, it is probably safe to say that we recognize it when we see it.  Perhaps the poet Jane Hirshfield described the concept of resilience in the most eloquent and poignant way of all, in her poem entitled “Optimism”:

More and more I have come to admire resilience.
Not the simple resistance of a pillow, whose foam
returns over and over to the same shape, but the sinuous
tenacity of a tree: finding the light newly blocked on one side,
it turns in another…