Deborah Barrett, PhD, MSW, LCSW is a clinical associate professor in the School of Social Work at the University of North Carolina at Chapel Hill, and a psychotherapist in private practice. Professor Barrett has published self-help articles on fibromyalgia and other chronic pains as well as scholarly papers on health, illness and public policy. Her book, Paintracking: Your Personal Guide to Living Well With Chronic Pain, offers a hands-on approach to improving life with chronic pain, in conjunction with the accompanying website, Paintracking.com, with its free online tracking tool.
“You look fine….” Such words are usually intended as a compliment. Sometimes they provide reassurance. But they can also produce confused feelings when someone is silently suffering.
This problem is not unique to fibromyalgia. Parallels are easily drawn with other conditions with controversial diagnoses and uncertain cause, such as chronic fatigue syndrome (ME/CFS), posttraumatic stress disorder, and premenstrual syndrome. These disorders can be considered “invisible” disabilities because they are virtually impossible for casual observers to detect.
What does it mean to contend with a seemingly invisible medical condition? It does not always work against us, for we can “pass for normal” when we want to. At other times, however, it might be helpful to have a large sign on our forehead saying “PAIN” or some such thing.
In what follows, I address why fibromyalgia has been nicknamed the invisible disability and how this has been changing. I also discuss issues relevant to having an invisible disability. For those of us suffering with pain and fatigue, it feels anything but invisible.
What I propose are ways to make our experience more visible, in a sense, so that we can better confront it.
Unlike illnesses with “objective” measures and agreed-upon treatment programs, with fibromyalgia, we are the ones best able to detect the vagaries of our condition. It is therefore up to us to discover ways to understand and improve our situation. As we become more versed in the determinants of our symptoms, the seemingly invisible quality of our condition can work to our advantage.
Ideally it becomes our decision when and how to make our experience visible and when to keep it invisible.
The Visibility of Fibromyalgia
The visibility of fibromyalgia is no doubt increasing. Those who developed fibromyalgia more recently are much “luckier” than those who had to bite the bullet for years while being told they were perfectly healthy.
Fibromyalgia is now understood to be the most common cause of chronic musculoskeletal pain. Sources estimate between 3 and 26 million Americans suffer from this condition.
One of the most significant contributions to this change was the creation of diagnostic criteria by the American College of Rheumatology in 1990. The official diagnostic criteria rest on an examination by a knowledgeable physician of “tender” points throughout the body. Although the criteria are subjective, they are quantifiable; the diagnosis is made when the patient responds to moderate palpation at a minimum of 11 of the 18 sites.
Although some physicians remain inexperienced and reluctant to examine tender points, and some (including rheumatologists) refuse to accept that the bundle of symptoms constitutes a real disease entity, a growing number of physicians recognize and treat fibromyalgia. [In 2010 a team of specialists designed an approach that physicians lacking the ability to perform an accurate palpation exam can use in screening for fibromyalgia. It is based on the score from a symptom questionnaire completed by patients themselves and appears to work quite well.]
In addition, an international declaration in 1992 signed by medical experts from around the globe and endorsed by the World Health Organization decreed that fibromyalgia is “indeed a true medical problem.” Those of us with fibromyalgia might find such a declaration silly: Of course we have a problem – we know it is not normal to hurt from head to toe, day after day.
But the official recognition of fibromyalgia has had a tremendous impact on the legitimacy and therefore the visibility of our condition.
For the individual with fibromyalgia, the first step in making the experience visible is proper diagnosis by a physician. The diagnosis not only rules out other conditions, it opens up the gates to treatment. Being diagnosed with fibromyalgia initiates us into a sort of club. We soon become familiar with a new vocabulary – tricyclics, trigger-point injections, benzodiazepines, 1-10 pain scales – that become part of how we talk and even think about our own experience.
Unfortunately, it is still not unusual for people to see numerous specialists and undergo many expensive tests before acquiring the correct diagnosis. The search for a name for one’s suffering can be quite depressing and can lead one to question his own sanity.
As fibromyalgia and its symptoms are becoming more widely recognized, however, diagnoses are being made more quickly.
• With the diagnosis of fibromyalgia, our pain and fatigue become associated with a legitimate disability.
• This, in turn, enables us to pursue avenues available to those with more “visible” disabilities, such as handicap parking permits and Social Security disability payments. In 1999, the US Social Security Administration included fibromyalgia in its list of disabling conditions.
This does not mean that everyone with fibromyalgia would be determined to be “disabled.” However, if you are disabled by problems of fibromyalgia you no longer receive a label such as “adjustment disorder” to gain coverage.
How invisible is fibromyalgia? Well, it is certainly visible in bookstores and libraries, and on the Internet!
Over the last decade, dozens of self-help books have been published on fibromyalgia, and information sites and discussion groups span the Internet. In addition, fibromyalgia has now been discussed on mainstream television programs. Support groups have arisen across the country, providing information to patients and practitioners, and networking with health organizations, hospitals, and universities.
While ‘knowledge is power’, the abundance of information pertaining to fibromyalgia can also be confusing.
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The treatment options being touted range from acupuncture, blue-green algae, biofeedback, dietary regimes, cough expectorant, hormone therapy, hypnosis, and trigger-point injections to a long list of pharmaceutical drugs. As there is little expert consensus on “what works,” it remains challenging for even the best-intentioned reader to develop an ideal treatment program.
The Invisibility of Fibromyalgia
Why did fibromyalgia remain invisible for so long? One contributing factor is the fact that 80% to 95% of fibromyalgia sufferers are women.
Like other conditions predominantly acquired by women, its symptoms have often been attributed to hypochondria. In the 1950s and 1960s in the United States, fibromyalgia was often considered a “manifestation of psychogenic rheumatism” and patients were considered hysterical. Until recently, many physicians classified people who complained of the pain and fatigue as malingerers.
Even with growing evidence of the physical reality of fibromyalgia, the gendered nature and virtual invisibility of this condition can result in insensitive and (at worst) nontherapeutic doctor-patient relations.
The gendered nature of fibromyalgia can also negatively impact men.
As fibromyalgia is defined as a “women’s condition,” men with symptoms confront separate issues of credibility. Not only may men be overlooked as candidates for the diagnosis (as with breast cancer or eating disorders), they face the additional difficulty of contending with weak, painful muscles in light of masculine ideals of strength and independence.
Even some mainstream medical journals indicate that physicians are not enthusiastic about treating fibromyalgia.
• There are no laboratory tests to confirm the diagnosis, no understanding of the underlying cause, and no accepted therapeutic regimen to “cure” our condition.
• Clinical researchers complain that fibromyalgia treatment outcomes are difficult to evaluate because they lack “objective” findings.
• Furthermore, physicians are often frustrated by our multiple complaints and poor prognosis.
• Medical articles refer to fibromyalgia patients as “challenging” at best, and as “difficult” and “extremely draining.”
Traditional medical models best apply to those who conform to the “sick role,” that is, patients who temporarily discontinue their usual roles and resume them when they improve. We, on the other hand, must be motivated to maintain and meet normal social responsibilities, while contending with fairly constant physical problems.
This makes it even more imperative to focus on ways to make our symptoms visible to ourselves so that we can react accordingly.
Making Fibromyalgia Visible
Because the symptoms of fibromyalgia are obvious (quite obvious!) to those of us suffering from them, it is we who must render them visible by recording them. Only we with fibromyalgia are in the position to understand how changes in weather, activity, stress, and treatment programs influence how we feel. We know when we are a few steps away from “hitting the wall.” By devising a personalized record-keeping system, we can discern how various factors affect our pain, energy level, and general mood.
While the medical profession remains unclear about what constitutes the best regime for the fibromyalgia population as a whole, individual patients can determine what works for them by recording and analyzing their own data. We must don the hat of scientist and devise an optimal program.
Just like the diabetic who learns self management by taking blood sugars and regulating her insulin, or the asthmatic who measures his respiratory ability and self-medicates accordingly (and knows when to call the doctor), we can find ways to measure and regulate our activities. While we may not have the “benefit” of blood sugar level measurements, our symptoms remain visible to us at all times.
Making pain visible does not have to rely on words.
Sometimes writing about illness puts too much emphasis on the very things we want to ignore. Drawing pictures offers an alternative way to capture our daily experiences. Pictures can be simple or quite creative and elaborate: They could represent not only your mood, but also contain symbols for relevant factors such as weather conditions, medications, and daily activities or stresses. Trends that would have been lost on our daily memories could be detected in the overtime changes in visual representations.
The more visible our experience, the better able we are to educate our physicians.
Most of us take several prescription drugs and have tried countless others. The optimal program must be determined by trial and error. There are no better evaluative data than systematic records of our own experience.
In every interaction, we face choices about the extent to which we want to make fibromyalgia visible.
• Too much disclosure can generate fear, unwanted pity, and even discrimination.
• But hiding fibromyalgia completely may create unrealistic expectations that may be difficult and unhealthful to live up to.
• Ideally, visibility should be provided on a need-to-know basis.
In general, people calculate where and how they want to spend their money and time. In the same fashion, we decide how to allocate our precious energy and pain – whether, for example, we choose to shake hands with someone or offer an explanation (true or fabricated) to avoid it. This is a very individual decision.
But the bottom line in this issue of ‘visibility’ is control, taking one’s body into one’s own hands – which is the hallmark of the women’s health movement and of self-help groups. The importance of control is also echoed in the fibromyalgia medical literature.
A recent study found that “self efficacy” (the belief that one can competently cope with a challenging situation) was found to be the best predictor of improvement in fibromyalgia.
– Deborah A Barrett, PhD
Note: This material is reproduced with kind permission from Dr. Deborah Barrett’s Paintracking site. ©2011-2012 Deborah Barrett, All Rights Reserved. It has not been reviewed by the FDA and is not meant to prevent, diagnose, treat or cure any condition, illness or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it with your professional healthcare team.