Invisible Illness — What You Can’t See Does Hurt Her
Millions of individuals with chronic illnesses bear the extra burden of family, friends, coworkers, and even healthcare professionals who don’t believe these patients are ill because they don’t “look sick.”
Most days, Claire wakes up feeling like she hasn’t slept. She experiences sharp, stabbing pain in her joints, is barely able to sit at her desk at work because her neck and back muscles ache so much, and becomes exhausted after walking up the stairs in her house. Sometimes, her brain feels so foggy that she forgets the way to the grocery store where she regularly shops.
On some days, unpredictably, she may have a headache, diarrhea, and/or sore lymph glands in her neck and arms. Three of five doctors have told her that her troubles are psychological, and two others were baffled because her blood work and imaging tests were normal.
Her work supervisor has told her that her job is at risk because she has taken too many sick days, and her family, friends, and coworkers think she is either making excuses to avoid work and chores or pretending to be sick for attention. Eventually, Claire begins to experience anxiety and depression because she doesn’t understand why the doctors can’t give her an explanation and everyone close to her responds to her descriptions of pain and fatigue with “but you look so good.”
While individuals with visible illnesses—those requiring canes or wheelchairs or causing physical manifestations (e.g., hair lost from chemotherapy, tremors and speech irregularities from Parkinson’s disease)—do encounter sociocultural difficulties, their obvious medical conditions typically engender ready support and understanding from others. However, for those with invisible illnesses, such support may not be as forthcoming. And for those with invisible illnesses that remain controversial in the medical community and public eye, support may not come at all.
Debilitating joint and muscle pain, fatigue, migraines, and other chronic “invisible” symptoms frequently characterize autoimmune and autoimmune-related disorders, such as lupus, rheumatoid arthritis, fibromyalgia (FM), and chronic fatigue syndrome (CFS), which is also called myalgic encephalopathy/encephalomyelitis or chronic fatigue and immune dysfunction syndrome (CFIDS). Although all individuals with autoimmune disorders usually encounter skepticism about their invisible symptoms from others, conditions such as lupus or rheumatoid arthritis are well-established—albeit sometimes difficult—medical diagnoses, and the general public is aware of them as such. Often, simply informing skeptics about a medical condition is enough explanation.
However, individuals with FM or CFS are not so fortunate. “Not all chronic diseases are equal. Some are more accepted than others,” says Patricia A. Fennell, MSW, LCSW-R, the CEO of Albany Health Management Associates, Inc., which provides counseling and case management for chronically ill individuals, consulting and education for their employers, and professional training for the clinicians involved in care of the chronically ill.
Considered an innovator in the chronic illness and mental health fields, Fennell created an internationally recognized treatment approach for understanding and treating chronic syndromes; has authored several books, including The Handbook of Chronic Fatigue Syndrome; and served on an allied healthcare advisory committee for the Centers for Disease Control and Prevention (CDC), the board of directors of the International Association for Chronic Fatigue Syndrome, and the advisory board of the National Fibromyalgia Association.
There are more than 80 autoimmune diseases, and many can be considered invisible, she says. But there are substantial differences in how individuals are viewed culturally and socially, depending on their diagnoses. Diabetes, lupus, heart disease, and cancer may all be considered invisible illnesses, but “no one would ever consider questioning the limitations of an individual who says [he or she has] one of these diseases,” notes Fennell. Yet, this happens frequently for those diagnosed with FM and CFS, she says. According to The CFIDS Association of America, the condition’s name trivializes the illness as little more than tiredness, even though the illness is associated with a “constellation of debilitating symptoms.”
The CDC states that CFS can be as disabling as multiple sclerosis (MS), lupus, rheumatoid arthritis, and congestive heart failure. The CDC and scientific researchers recognize FM and CFS as legitimate medical diagnoses and have established that their prevalence is higher than originally estimated, especially CFS. According to epidemiological research, the previous estimate of approximately 1 million Americans with CFS may be significantly lower than the actual prevalence. Although the academic scientific community has fully accepted FM and CFS, acceptance has not disseminated throughout the entire medical community. In general, clinicians practicing near major research centers have faster and better access to the most current scientific information. Therefore, patients with FM and CFS may have different experiences as they navigate through the diagnostic and treatment process.
“For many invisible illnesses, there has been more understanding, attention, and validation from the medical community. In terms of public awareness and acceptance, FM seems to be farther along than CFS,” says Deborah Barrett, PhD, MSW. “CFS is still battling to become legitimate in the medical community and public eye. This struggle is evident in the continued contestation among patient activists and researchers over what to call this syndrome.” A clinical assistant professor in the School of Social Work at the University of North Carolina at Chapel Hill and a practicing clinician in adult mental health, Barrett organized and participated in the interdisciplinary workshop “Seeing Invisible Illness: Transforming the Clinical Gaze through Lived Experience” in 1997 at Emory University.
A Difficult Diagnosis
“While FM is becoming more accepted, it is often the diagnosis of last resort,” says Anne Cattarello, MA, PhD, a psychotherapist in private practice and an adjunct faculty member in the department of contemplative psychotherapy at Naropa University in Boulder, CO, who works with clients with FM, CFS, and other chronic illnesses. Unlike some autoimmune diseases that may be diagnosed by blood work or medical imaging tests, FM is diagnosed by patient symptom history and a palpation test of 18 points on the body. According to criteria from the American College of Rheumatology, FM may be diagnosed if the patient has diffuse chronic pain for more than three months and experiences pain when at least 11 of 18 points are pressed by the physician.
However, these criteria are considered less objective than more standard lab tests. Even when other medical conditions have been ruled out and the patient meets these criteria, many physicians are reluctant to diagnose a patient with FM or CFS. To complicate a diagnosis further, FM and CFS often occur in conjunction with another autoimmune disorder or with each other. However, there are no diagnostic laboratory tests for FM or CFS. Research conducted by the CDC indicates that less than 20% of patients with CFS in the United States have been diagnosed.
Rosalie Devonshire, MSW, LCSW, was diagnosed with FM and CFS in the early 1990s. She is the director of counseling for the Fibromyalgia Treatment Centers of America and author of the book Taking Charge of Fibromyalgia. Devonshire also works at a hospital counseling center, helping FM patients navigate their way through care and treatment. Devonshire and Fennell point out that the world of autoimmune and autoimmune-related disorders is dominated by women and wonder if the medical diagnosis and treatment process would be different if these conditions affected men as equally as or more. Fennell likens some current views on FM and CFS to views on MS in the 1950s. “Fifty years ago, multiple sclerosis was considered a hysterical manifestation in women,” she notes.
Things may soon change, though, due to the number of individuals who have been found to have FM or CFS. “Epidemiological research suggests that more individuals have FM or CFS than MS,” Fennell says. Increasing numbers of FM and CFS patients have drawn the attention of pharmaceutical companies, which, in turn, is likely to generate more public and physician attention. “The large pharmaceutical companies are beginning to influence how these conditions are viewed because drugs have recently been approved for and are being advertised for treatment of these conditions,” Fennell explains.
Evidence for genetic and environmental links is also contributing to the growing interest in these conditions. “There is now really good evidence for a genetic link [since] genetic markers for FM and CFS have recently been identified,” says Fennell. Episodic and regional “outbreaks” of CFS have been documented, suggesting genetic, viral, and/or environmental causes. And imaging studies are demonstrating physiologic changes in the brains of patients with CFS and how the brain processes pain in patients with FM.
Clinical evidence for FM and CFS will not only help clarify the nature of these conditions and evaluate new treatments but also provide validation for the medical community. Fennell believes that clinical care is changing but slowly. “FM and CFS patients have historically received inadequate treatment, and medical mismanagement has commonly occurred. Now, we have progressed to developing emergency department guidelines for treating FM and chronic pain patients,” she explains.
Fennell is working to improve the diagnostic process for FM and CFS. She developed the Fennell Four Phase Treatment (FFPT) Approach, a framework for understanding the process of adaptation that patients with chronic illnesses experience, with the ultimate goal of helping clinicians treat patients more effectively.
Fennell’s model is considered an integrated systems approach, which includes all aspects of an individual’s illness—the physical/behavioral, psychological, and social/interactive. A key premise is that a patient’s physical, emotional, and social needs in the early phases of the chronic illness can be considerably different from the needs of a patient who has been ill for several years, and these needs affect how the patient will respond to treatment—medical or psychosocial. Fennell’s treatment model is used by social workers and clinicians. Active in epidemiological and scientific research to move FM and CFS from their current controversial clinical status, Fennell merges science with social work. “Part of my mission has been to bring a social work presence into that [scientific] world, to communicate the physical and psychological ramifications of chronic disease, not just the statistics,” she says. As the only social worker on the CDC advisory panel, Fennell offers the social worker’s unique perspective to scientists and clinicians as a speaker while still staying clinically involved a few days per week.
The Social Worker’s Role
Yvette Colón, MSW, PhD, director of education and Internet services for the American Pain Foundation, says, “I also educate healthcare professionals about the needs and concerns of patients and families who are dealing with chronic illnesses.” Because patients and families may have no expectations for effective treatment or they may not know how to communicate effectively about their illness or experiences, Colón educates healthcare professionals about how to improve communication with patients and families regarding chronic pain.
The team of clinicians involved in the management of patients with FM and/or CFS is varied and may include several specialists, such as a rheumatologist, primary care physician, neurologist, physical therapist, and psychiatrist.
What can social workers do to help individuals cope with chronic invisible illnesses that are not as accepted by the medical community? “They can do what social workers do best,” Colón says, “work together as a team, help educate patients about their illness, validate their illness and experiences as real, find useful resources, strengthen their ability to communicate effectively, and not only advocate for them but teach them the skills to advocate for themselves as well.”
Validation and understanding of the illness and the extent and severity of the symptoms is an important first step in establishing a relationship with the patient. “A key role for the social worker is validation for the individual with an invisible illness,” Barrett says, “helping them navigate the medical establishment and deal with an often confusing and demoralizing process toward diagnosis and treatment.”
The “flares” in symptoms associated with FM, CFS, and autoimmune disorders create uncertainty not only for the patient but also for physicians, family, friends, and coworkers. “Others may not understand how you can feel good and function well one day, then be incapacitated the next,” Barrett notes. Diagnosed with FM herself, Barrett has firsthand experience with these ups and downs in daily functioning.
Devonshire emphasizes understanding as first and foremost for social workers interested in working with FM and CFS clients. “This is a real, true illness. You must believe patients when they describe how bad they feel. Sometimes, they may feel so poorly that they cannot get to an appointment. Communicating understanding of the degree of pain and fatigue and the need for appointment cancellations is important for the client,” she explains.
Cognitive problems often accompany FM, CFS, and other autoimmune disorders. Called fibrofog or brain fog, this symptom can interfere with reading comprehension, memory, and driving ability. Simply acknowledging that this occurs and recognizing that it may affect therapy sessions will strengthen the relationship between client and therapist. “Accepting their illness—letting them know that you believe in the severity of their condition—may be the best thing a social worker can do for these patients,” Devonshire says.
According to Devonshire, many FM and CFS patients are reluctant to get counseling because they are afraid they will once again be told that it’s all in their head. Because their primary goal is to eliminate pain, many FM patients believe that counseling will not help. However, Devonshire believes it plays an essential role in the management of FM and CFS. “Counseling sessions can teach relaxation and imagery techniques for pain and stress management, help reduce negative thought patterns, and empower patients to help them deal more effectively with their condition,” she says. The many uncertainties associated with the poorly understood medical causes of FM and CFS create psychosocial issues for patients that may be resolved through psychotherapy.
However, outside the social worker’s venue, CBT as a treatment for CFS and similar chronic invisible illnesses has generated controversy. Many members of the scientific community believe that it perpetuates the “it’s all in your head” viewpoint, and clinical studies have shown mixed results. While science may not support its use, CBT is a primary tool for social workers who practice counseling and psychotherapy. When used appropriately, Fennell says that CBT can help. But as the patient and their illness evolves, other techniques are necessary.
According to Barrett, cognitive psychotherapy can also help clients work through grief issues. “Bereavement work is common for social workers; however, the mourning that accompanies an invisible illness is not the kind of grief we are used to seeing. Loss of physical and cognitive functioning, a career, and relationships on account of chronic invisible illnesses needs to be understood by social workers so they can help clients through grief and toward acceptance,” Barrett explains.
Having FM guided Cattarello into her new career helping and supporting others with the condition and other chronic invisible illnesses. A sociologist-turned-psychotherapist, Cattarello feels that her own experience with FM helps her understand the difficult feelings and emotions her clients deal with and makes her a more informed psychotherapist in helping them develop self-care techniques. “Self-care involves learning to be in tune with one’s needs, like finding a balance between activity and rest,” Cattarello explains. “FM patients tend to push beyond what their body can handle; overstressing the body can then lead to an escalation of symptoms [a flare].” Self-care is often neglected by many FM patients, she says, and is an important management tool that social workers can facilitate for them.
Barrett has also applied her own experience with FM to help others and is currently working on a book called Paintracking, in which she offers individuals with FM and other chronic pain a comprehensive guide to identifying pain triggers, with the ultimate goal of learning to live better with the condition. “Pain tracking is not about dwelling on your pain. Rather, it is an approach to compiling individualized information to increase your control over your condition and your life. One of the most vexing problems with FM is that symptom flare-ups seem to come ‘out of the blue.’ By collecting systematic data on your experience, or ‘paintracking,’ you can learn what helps and what hurts and devise strategies to improve how you fair,” Barrett explains.
The chronic pain that FM and CFS patients suffer with daily not only impacts their bodies but also their thoughts and behavior, creating psychosocial issues that can be addressed by social workers. “People with pain and other chronic illnesses often experience interrupted sleep; interference with eating, thinking, and concentration; and decreased physical and sexual activity. They may be unable to enjoy being with family and friends. Anxiety and depression are common,” Colón notes.
“When you feel so bad physically, it affects your thoughts. Feeling bad leads to thinking you are bad,” Cattarello adds. As part of the self-care plan development, she works with clients’ negative thought processes, encouraging them to “be gentle with the self.”
Managing stress, supporting relationships, and facilitating lifestyle changes are other roles for the social worker in the management of clients with FM and CFS. Stress management is important because physical and emotional stress can make FM and CFS symptoms worse, says Devonshire. “Lack of continued support from family and friends can also become a problem. Because these conditions are chronic and ongoing, family and friends who are initially supportive can become burned out,” Cattarello says.
Whatever role a social worker has in the management of patients with chronic invisible illnesses, they should plan for a long therapeutic relationship, Cattarello emphasizes. “There is no quick fix for these conditions. For many patients, their whole life changes. These patients are long-term clients.”
— Jennifer Sisk, MA, is a suburban Philadelphia-based freelance writer with 15 years of experience as a writer and research analyst in the healthcare field. She has written about depression, attention-deficit/hyperactivity disorder, schizophrenia, mental wellness, and aging.
Centers for Disease Control and Prevention — Chronic Fatigue Syndrome
CFIDS Association of America: www.cfids.org
The Invisible Disabilities Advocate: www.myida.org
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