Fibromyalgia: An "Invisible" Disability
Deborah A. Barrett
http://www.paintracking.com/fms03.html
"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, 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 a 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 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 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 her 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.
Sup****t 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. 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 tem****arily 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 fa****on, 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 im****tance 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.
|
