The Very Different World of Long-Term Illness
By Bruce Campbell
Note: Adapted from Chapter 1 of The Patient's Guide to Chronic Fatigue Syndrome and Fibromyalgia.)
When you develop a long-term illness, like Chronic Fatigue Syndrome (ME/CFS) or fibromyalgia, you may feel like you have entered a new world in which all the rules of life have changed and there is no obvious way forward. This perplexing situation can make you feel helpless. But there are many things you can do to gain control and improve your well being.
This book will show you how to take an active role in managing your illness.
We'll start by looking at how long-term illness is different from short-term illness and terminal illness. Short-term or acute illnesses are temporary problems that usually end because of medical treatment or the passage of time. Terminal illness, in contrast, is a life-threatening condition.
Perhaps when you first became ill with ME/CFS or fibromyalgia, you thought you had a short-term illness, but one that kept hanging on. At some point, however, you realized that you had entered a new realm.
You were confronted by the fact that your illness was neither a temporary interruption of your life, nor a life threatening condition, but a third type of problem: an illness that lingered, but was neither self-limiting, nor fatal.
Instead of resuming your previous life after a brief interruption or struggling with a terminal illness, you were faced with having to adjust to long-term symptoms and limitations.
Not only does chronic illness impose limits and bring symptoms that persist, it touches many parts of your life. It affects your ability to work, your relationships, your moods, your hopes and dreams for the future, and even your sense of who you are.
Chronic illness is hard to manage because its effects are so comprehensive. Living with ME/CFS or fibromyalgia means much more than managing symptoms.
Complicating the challenge, there is an interaction between your illness and other parts of your life. Your illness impinges on many aspects of your life and, in turn, is affected by these other parts. (See diagram.)
For example, serious illness reduces your activity level (arrow pointing out from CFS/FM to Activity), but if you try to do more than your body can tolerate, you will experience higher symptoms (arrow pointing in). Doing too much repeatedly can result in greater limits.
Interactions of illness and other factors
The same pattern of reciprocal effects is true for other elements as well. Take the relation of illness and stress. Living with symptoms on a daily basis is inherently stressful. In addition, illness often creates financial pressures, complicates relationships and brings great uncertainty about the future.
In all these ways, illness increases stress. But stress, in turn, can make symptoms worse. Even moderate amounts of stress can greatly intensify symptoms, creating a feedback loop in which symptoms and our reaction to them intensify one another.
The same two-way relationship applies to feelings as well. Emotions like worry, anger, depression and grief are normal reactions to having chronic illness, understandable responses to a situation in which life is disrupted and routine replaced with uncertainty.
These emotional reactions to being ill may be particularly intense in ME/CFS and fibromyalgia, because these illnesses seem to make people labile, meaning that their emotions are stronger than before and harder to control. The strength of emotions can create a vicious cycle in which illness intensifies emotions and then emotions, in turn, intensify symptoms.
For example, people who are depressed have a lower threshold for pain. Also, pain can be intensified by anger, because anger usually creates muscle tension. Intensified symptoms, in turn, may generate more worry and pessimism.
There are similar interactions between illness and relationships, and illness and money. When someone is ill for an extended period, relationships often suffer, because the patient feels discomfort and has less energy, and because others have their lives disrupted, too.
But relationship problems, like not feeling understood or worry about being abandoned, create new stresses, that in turn make symptoms worse. Illness affects finances by reducing income. Financial worries then increase stress, which translates into higher symptoms.
In summary, ME/CFS and fibromyalgia have comprehensive effects, touching many parts of your life. They are much more than simple medical problems. A plan for managing them has to address all its effects, not just symptoms.
Your Unique Situation
Just as chronic illness is comprehensive in its effects, so too is it tremendously varied. Each person's case of ME/CFS or fibromyalgia is different, both medically and in other ways. The severity of symptoms ranges widely.
Some people have relatively mild symptoms, while others may be bedridden and most fall on various points in between. Also, there are many different patterns of symptoms. Some people may have pain as their major complaint, while for others the main problem is fatigue, brain fog or poor sleep
Adding to the complexity, each person's illness may vary over time. Some symptoms may disappear, only to be replaced by new ones. Some people may have a relatively stable course, while others may fluctuate between times of severe symptoms and times of remission.
Finally, CFS and fibromyalgia may be complicated by the presence of one or more other chronic illnesses. About two thirds of the people in our groups, for example, struggle with two or more medical problems.
The most common pattern is people who have both ME/CFS and fibromyalgia, but frequently people with either ME/CFS, fibromyalgia or both also have one or more other medical issues, such as arthritis, back and spinal problems, depression, food and chemical allergies, irritable bowel syndrome (IBS), lupus, myofascial pain, sleep disorders like apnea and restless legs syndrome, and thyroid problems.
The bottom line: each person's illness is different. To treat your illness effectively, you need to understand your unique situation.
One way to begin understanding your individual circumstances is to identify the severity of your illness and your symptom pattern. To get an idea of how your situation compares to others', place yourself on the ME/CFS & Fibromyalgia Rating Scale.
If there is a discrepancy between your score based on activity level and your score based on symptoms, rate yourself using the severity of your symptoms. Most students in our course have rated themselves between 25 and 45 at the start of the course, but we have had people across almost the full range of the scale.
Just as people with ME/CFS and fibromyalgia differ in their symptoms and in the severity of their illness, so do they come from many different life situations. A majority are married, but many are single. They are of many different ages and life circumstances. To understand your situation requires that you assess how your unique life situation affects your illness, especially in the areas of resources and relationships.
Some patients find their financial situations have changed little since they became ill. Perhaps they have a mild case of CFS or fibromyalgia and can continue to work. Or, maybe they have family members who work or they receive disability payments that replace their former income.
For others, however, financial pressures can be great, even overwhelming. Some people live alone with little or no income and no financial cushion. Many are somewhere in between, stressed to some degree, but able to maintain a lifestyle more or less similar to the one they had before becoming ill.
Chronic illness changes relationships, creating new obligations and also new strains and frustrations. You may be single and struggle alone with your illness. Even if you live with a family, you may feel isolated and not understood. All family members are challenged to live differently; some may have to assume additional responsibilities. Relationships can be great sources of support, sources of stress or both.
In addition to your illness and your life circumstances, your unique situation includes two other significant factors: your coping skills and your attitude. The hopeful thing about both is that, unlike some other elements, they are not fixed. You may not be able to change the fact that you have ME/CFS or fibromyalgia, but you can learn new and more effective ways to deal with your illness.
Research has proven that people can learn effective coping skills through brief self-help classes. One such program is the Arthritis Self-Help course, which was developed at Stanford University in the late 1970's and has now been taken by over 300,000 people.
This six-session class on coping with problems such as pain, loss of function and depression is taught by volunteers, many of whom are arthritis patients. Patients taking the class have significantly reduced their pain and depression, and increased their activity level.
Research has shown that the patients who improve the most through the class are those who believe in their ability to exercise some control over their illness. These people do not deny they are sick or hold unrealistic hopes for recovery, but they have confidence that they can find things to make their lives better.
Research studies of the class have shown that patients are able to learn new attitudes and skills, and that a brief, volunteer-led course can produce significant change. (I worked on this program, and it was one model I used in developing our self-help course.)
Similar programs at UCLA and Harvard for skin cancer and chronic pain have produced comparable results. Patients who took a six-session course on coping with skin cancer showed an increase in life expectancy in comparison to other skin cancer patients. And patients who took a course on combating chronic pain reduced their visits to doctors, their levels of anxiety and depression, and their experience of pain.
Research led by Dean Ornish produced a reduction in heart disease. Using lifestyle changes such as a low-fat diet, exercise and group support, the patients in Ornish's program reversed symptoms of heart disease. In other research, people with diabetes have been able to reduce by half their risk of heart attacks and strokes by using a stricter than usual regimen of blood testing and insulin injections.
All these programs are based on the principle that how we live with chronic illness can change its effects on us and may even change the course of the disease. They demonstrate that using good coping skills can make a significant difference to quality of life.
A second form of self-help, the Twelve Step movement that began with Alcoholics Anonymous, offers further evidence of the power of people to help themselves. Groups in this tradition are based on the idea that people who share a common condition can band together to help one another. Typically, groups of this type provide a set of ideas that help people regain control of their lives through the support, encouragement and inspiration of the group.
The principles of the self-help approach apply to people with ME/CFS and fibromyalgia. As with other life problems, learning to manage chronic illness involves adapting to new circumstances by making adjustments to daily habits and routines. Mutual support can be very useful in this process.
In addition to coping skills, attitude is important to living well with long-term illness. The attitude that seems to help can be characterized as being at the same time both realistic and optimistic. I call it acceptance.
Dean Anderson, a recovered ME/CFS patient whose experience is described in an article in our Success Stories archive, provides an example. He writes that after failing to improve by determination and hard work, he came to a certain kind of acceptance that he says is not resignation, but rather "an acceptance of the reality of [my] illness and of the need to lead a different kind of life, perhaps for the rest of my life."
He goes on to say that "the ‘effort' required to recover from ME/CFS is an exercise in discipline and hopefulness, not determination and striving." He describes the discipline he believes is required as the ability "to recognize and adhere to one's known limitations and to follow a strict regimen without periodically lapsing."
The Six Challenges of Long-Term Illness
As suggested above, long-term illnesses like Chronic Fatigue Syndrome and fibromyalgia confront you with different challenges than short-term illness. The chapters that follow are organized around six of these challenges. The long-term nature of ME/CFS and FM suggests the first two.
To live well with your illness, you must adopt an active role as a patient and you must deal with ongoing symptoms. The other four challenges are rooted in the fact that ME/CFS and fibromyalgia are more than simple medical problems; they touch many parts of your life. We will focus on four parts: stress, emotions, relationships and loss.
Becoming a Self-Manager
With long-term illnesses like ME/CFS and fibromyalgia, you have a different role as a patient than with acute illnesses. With short-term illnesses, you often can rely on a doctor to provide a solution or the illness resolves itself.
But ME/CFS and fibromyalgia are not self-limiting and don't yet have a medical cure. Ongoing conditions that can't be cured need to be managed and, whether or not you want the role, you are the day-to-day manager of your condition.
ME/CFS and fibromyalgia usually have multiple symptoms, and each symptom often has more than one cause. Most patients respond by using a variety of strategies, which may include medications, alternative treatments and lifestyle changes. For a discussion of a range of treatment options for the symptoms of ME/CFS and FM, see the Treatment Options archive.
Because I share Dr. Lapp's philosophy that ME/CFS and FM are "best managed with adaptation and lifestyle changes," our Pacing archive has many articles devoted to how you can improve your life by making changes in your daily habits and routines.
Stress can be a challenge for anyone, but it is doubly difficult for people with ME/CFS or fibromyalgia. First, being chronically ill adds new stresses to the challenges of everyday life. The additional stressors include the discomfort of symptoms, isolation, financial pressure, strained relationships and uncertainty about the future.
Second, ME/CFS and fibromyalgia are very stress-sensitive illnesses. They seem to reset the body's "stress thermostat," so that the effects of a given level of stress are greater than they would be for a healthy person. Controlling stress can have a big effect on both symptoms and quality of life.
For ways to reduce and prevent stress, plus step-by-step instructions for several relaxation procedures, see the articles in the Stress Management archive.
Strong emotions like fear, anger, grief and depression are common reactions to chronic illness. Such emotions are a normal and understandable response to being in a situation in which life is disrupted and routine is replaced with uncertainty.
Unfortunately, ME/CFS and fibromyalgia seem to make emotional reactions even stronger than before and harder to control. For a discussion of how to use self-help strategies and medications to manage depression, anxiety and anger, see the articles in the Emotions archive.
Serious illnesses like ME/CFS and fibromyalgia create great strains in families and test other relationships as well. The unpredictability of symptoms and of emotions makes daily life difficult for everyone. Family members and friends may take on new, additional responsibilities while suffering losses themselves.
At the same time, patients often feel isolated both physically and psychologically. For strategies to help you respond to the frustrations in relationships created by long-term illness, see the Relationships and Support archive.
Chronic illness brings many serious losses, including the loss of familiar roles, loss of income and loss of control over our bodies. The pervasiveness of loss presents us with one of our biggest challenges: bringing new meaning to life when much has been taken away. Life with long-term illness can be a spiritual journey.
Illness provides an opportunity to reevaluate your life and recast it in a new way. You may not be able to restore your old life or live the life you had planned, but you can create a different kind of life than you had before becoming ill.
Both Chronic Fatigue Syndrome and fibromyalgia have comprehensive effects, touching many parts of patients' lives. They are much more than simple medical problems. Rather than lending themselves to being resolved, they are conditions that patients have to learn to manage.
Self-management is not a cure for ME/CFS or fibromyalgia, but it provides tools for coping that can also promote improvement and even recovery in some cases. When offered through a group, self-help also includes support, inspiration and encouragement from fellow patients.
This book is based on a belief in the power of self-help, the conviction that patients can change the effects of long-term illness through their efforts. The upcoming chapters contain many ideas for things you can do to feel better. These strategies are not aimed at curing ME/CFS or fibromyalgia, but they can help reduce pain and discomfort, bring greater stability, and lessen psychological suffering.
Self-management of long-term illness is no magic bullet; it requires hard work and patience. I hope you can join the many patients who find that they can affect their symptom level and quality of life significantly by accepting responsibility for those things under their control.