URL: http://www.theledger.com/apps/pbcs.dll/article?AID=/20070402/NEWS/704020367/1004
Some Doctors, Friends, Relatives Dismiss Sickness
As a teenager, Lakeland resident Jiwa Farrell was diagnosed with lupus,
an autoimmune disease that affects mostly women and often mimics
fibromyalgia and chronic fatigue syndrome.
It's easy to make personality judgments about people with fibromyalgia and
other chronic pain disorders. The patient's current lethargy and
inactivity can yield assumptions of lifelong laziness and aversion to
work. Those diagnosed with the ailments say it's a common and frustrating
misconception.
"I don't think I have ever met a person with fibromyalgia who is lazy,"
said Lynne Matallana, president of the National Fibromyalgia Association.
"Quite the opposite."
Matallana said a high percentage of fibromyalgia patients are "Type A"
personalities who were high-achieving professionals before the illness
struck. Matallana, 51, worked as a partner in a prominent advertising firm
and was athletic before she became ill in the early 1990s, eventually
spending two years in bed after being wrongly diagnosed with lupus.
Local patients have similar backgrounds. Martha Grierson of Winter Haven
worked long hours as a sales manager for a large corporation before
fibromyalgia prematurely ended her career. Lynn Anderson of Polk City used
to show horses in competitions, though fibromyalgia now prevents her from
even mounting a horse.
Lakeland's Laura Bodner, another fibromyalgia patient, formerly worked as
a firefighting trainer and exercised five days a week. Davenport resident
Millie Haddad was a nurse with a side business until being diagnosed with
chronic fatigue syndrome, and Teresa Kucera, a Lakeland resident with the
same disorder, worked as a medical assistant and said she "used to be like
a tornado."
Government medical agencies have recognized fibromyalgia and CFS as
legitimate disorders in the past decade or so, but patients say skepticism
remains commonplace, especially among general practitioners. Every
fibromyalgia patient seems to have at least one story of rude or
dismissive treatment from a doctor.
Grierson and other local patients said doctors have suggested their
problems are psychological rather than physical. "I've actually had a
doctor tell me I need mental health help, that it was all somatic, which
is a kind way of saying it's all in your head," Grierson said.
Bodner, 45, described the hostility she received from a local doctor after
seeking a refill of Darvocet, a prescription pain medicine.
"My daughter got real upset because she sees how much pain I'm in, and she
goes, 'Can't you just give her something that's going to help her instead
of Darvocet?'" Bodner said. "And (the doctor) said, 'I don't even like
giving her Darvocet because I think she's overreacting. Somebody who's got
fibromyalgia shouldn't be in this pain.' My daughter just went off on the
doctor. She was saying, 'You know, I wish you could just have it for one
week so you could see what my mother goes through.'"
Matallana said the lack of compassion and understanding from doctors
compounds the physical and emotional distress of the illness itself. "I
know in my case I just had the idea if you got sick you went to a doctor
and they treated you," Matallana said. "I never, ever imagined someone
would question my pain and my inability to function. That was to me almost
as bad as enduring the physical symptoms."
Confusion, skepticism
The transformation of dynamic people into suffering wrecks, without any
apparent cause, prompts confusion and questioning. Fibromyalgia patients
say even friends, relatives and spouses find it hard to accept the reality
of what has been called an invisible illness.
"Even my family was skeptical at first," said Randy Jones, a Dade City
resident who receives treatment for her fibromyalgia at Salazar Family
Clinic in Mulberry. "Even my husband, it was like, 'Maybe you just don't
want to get out of bed.' "
Jones, 60, admitted she had doubts about fibromyalgia before the illness
struck her in 2000, leaving her incapacitated for long periods. "Nobody
walks in your body but you, and how can one person say what another person
is feeling?" she said. "Why would I want to do this to myself?"
Grierson likewise has had friends and relatives question her condition.
"Some I thought would understand have accused me of being drug-seeking, of
being lazy, of doing this for attention," she said. "It's just awful the
things people will say because they don't understand and it's not a common
thing and you don't carry scars on the outside of your body. It makes
coping with what's wrong with you that much worse because if you hear it
enough you begin to think maybe you are a little crazy. That's the
insidious thing of it."
If the medical world has been slow to accept fibromyalgia and other
chronic pain disorders, it's perhaps no surprise patients describe having
difficulties with medical coverage and government disability programs.
Grierson said she faced constant battles with her insurance company over
payments for treatments, and at one point when she lived in Pennsylvania a
doctor sued her over the plan's failure to pay medical bills. She had
equal trouble getting approved for Social Security Disability Income,
going through two years of denials before she hired a lawyer who helped
her prevail in a court hearing.
Bodner said she has twice been turned down for SSDI since applying last
year. She has enlisted a lawyer to help her push for the government
supplement.
Anderson has Medicare coverage, but she said the plan doesn't cover
massage therapy, the only treatment that offers her significant relief
because the effect is temporary. Her sister, Terry Anderson, became a
massage therapist after observing Lynn's ordeal, and she sometimes travels
from Pinellas County to offer her services.
Haddad, who required a court hearing before being approved for SSDI, said,
"It took a long time before I was able to collect disability because they
didn't believe this till a lot of doctors started getting the disease
themselves."
'The F-Word'
Dr. Patrick Wood, an assistant professor of medicine at Louisiana State
University, decided to specialize in fibromyalgia in part because it was a
verboten term during his training. As Wood points out, many diseases now
universally accepted - including malaria, asthma and Parkinson's - were
previously dismissed or relegated to non-medical categories.
"When I was in medical school, it was theF-word," Wood said. "You didn't
even say it around other physicians. I was very intrigued to think there
was a medical entity you could choose not to believe in, like a ghost or a
fairy... I've always kind of stuck up for the underdog, and fibromyalgia
patients are kind of the underdogs of the medical world." Despite recent
progress, Wood said, "I've been at the same institution for 10 years, and
there's still tremendous hostility toward the disorder (fibromyalgia) and
toward the diagnosis from people who certainly should know better."
Chronic pain patients and their advocates cite several factors behind the
lingering skepticism among many doctors. One is the lack of verifiable
causes. The ailments arise gradually in some patients, while others point
to a specific traumatic event as the trigger. The trauma can be physical -
in Anderson's case, being kicked in the face by a horse - or emotional,
such as a divorce or the death of a spouse.
Advocates say the varying intensity of symptoms also fosters doubts. "The
illness can wax and wane, and when people feel better oftentimes they push
themselves so others see them up doing what normal people would do, and
the next week they're back in bad," Matallana said. "That doesn't make
sense; we think of illness as being continuous."
Wood, noting that doctors dislike uncertainty, said many general
practitioners are loath to admit they don't have an explanation for a
patient's complaints and react by questioning the patient's description.
"I don't think it makes me popular with my colleagues, but we're trained
to be little gods and anything that challenges our god-like capacity we
dismiss," Wood said. "(A doctor) could say, 'There's nothing to
objectively demonstrate you're really sick. How do I know you're sick?'
You have to trust the patient's report, which we're often not willing to
do when it comes to pain."
Patients say it often becomes clear they know much more about their
conditions than the doctors charged with treating them. Haddad of
Davenport has attended countless seminars on chronic fatigue syndrome
since being diagnosed with it, and she said most doctors dispense merely
obvious advice - eat right, sleep right, lose weight.
"A lot of health-care providers feel uncomfortable because of the limits
of their expertise," said Dr. Roland Staud, a professor of medicine at the
University of Florida specializing in fibromyalgia. "Many physicians
wanted these patients to be seen by psychologists and psychiatrists and
did not feel equipped to deal with this."
A gender issue
Matallana and others say the gender factor also affects perceptions of
fibromyalgia. The preponderance of patients are women, and advocates cite
a long history of medical authorities dismissing female- oriented
illnesses as forms of hysteria. "You have to look back on the medical
community - it has basically been male-dominated," Matallana said. "I
don't think it's something they have done intentionally, but I know when
you have experienced something yourself it's much easier to understand
what it really is."
Lakeland's Jiwa Farrell was diagnosed at age 16 with lupus, an autoimmune
disorder that often mimics fibromyalgia and chronic fatigue syndrome and
disproportionately affects women. "I'm not trying to make this a feminist
movement or anything," she said, "but... it amazes me how many drugs they
have out for ED (erectile dysfunction) all of a sudden, and we haven't had
a new drug for lupus since the '60s."
Fibromyalgia and other chronic pain disorders sometimes occur in family
clusters. For example, Bodner said her two daughters, both in their 20s,
have been told they have fibromyalgia since she received her own
diagnosis, and several other local patients also said relatives share
their ailments. The phenomenon might suggest a genetic component to the
disorders, but to a skeptical mind it can also raise the prospect of
suggestibility.
Confusing matters further, fibromyalgia and related disorders seem
intertwined with psychological components. Many patients exhibit signs of
depression, leading to a chicken-and-egg question about the relation
between psychological distress and physical pain.
"The question that was raised in the past was in what category of medical
illness these symptoms would fall," said Staud, the UF professor. "Many
physicians believed they would fall in the psychological-psychiatric area,
where some physicians believed it was in the purely physical area, and of
course thetruth is halfway in between, because for 200 years we know
there is no mind-body dichotomy.Every illness has these components. To
say someone has a purely psychological illness - this is not an up-to-date
approach."
Patient profiling
Dr. Edward Lubin of Winter Haven's Gessler Clinic said some general
practitioners engage in "patient profiling" when they encounter the
typical fibromyalgia patient - a middle-aged woman complaining of vague
pains. Lubin, a pain-management specialist, also cited the financial
pressures that limit the time doctors spend with each patient,
discouraging a thorough exploration of the patient's medical history and
fostering cynical reactions. "Some physicians have a sketch in their
minds," Lubin said, "so when a patient comes to their office with
complaints that can be treated with either antidepressants or narcotics,
they immediately have a picture in their mind of a patient, and they
either don't explore the nature of it or essentially they punt the patient
to a pain management doctor."
Lubin said some doctors dismiss patients with vague complaints of pain as
hypochondriacs or malingerers, lazy people looking for an excuse not to
work. Lubin said it doesn't help matters that he and other doctors
regularly encounter true malingerers, about whom they must make judgments
to determine government disability payments. "Every doctor is faced with
being a useful idiot, being a tool for somebody who wants to get out of
work," said Lubin, who trained at Yale and Harvard. "I'd rather you fooled
me once and then I could say, 'Shame on you,' rather than try to prevent
my ego from ever being bruised by assuming everyone whoever asked me for a
pill for their pain is a drug-seeker. We can't lose our humanity just
because we're afraid of being hoodwinked."
--------
(c) 2007 The Ledger
* * * *
I've dealt with some doctors who ignored my long history of employment, because all they saw before them was a woman who "doesn't want to work" and "wants to be a housewife", never mind that I've always worked and never wanted to be a housewife. My husband firmly believed that there was something wrong with me until a doctor planted the seed that the whole problem was that I "wanted to be a housewife and didn't have the guts to tell him I didn't want to work any more." Instead of standing up to the doctor that he didn't know me very well, my husband bought into it that all women want to be housewives, and started to believe the doctor more than what he saw with his own eyes.
Unfortunately, we moved for my husband's career, and I wound up with another doctor who, as the article notes, "questioned the patient's report". I described classic CFS symptoms, but because they didn't match up with the symptoms of depression, he dismissed them, explaining later that "nothing you said made sense". Had he known the symptoms of CFS, what I told him would've made perfect sense, but as soon as I revealed my marital status was Divorced, he leapt to the diagnosis of post-divorce depression, and nothing would budge him off that, not even reports that the anti-depressants weren't helping. His ego required him to believe that I was mistaken, not that he was mistaken.
