Acute pain: a known evil, a near-universal experience. Doctors know its cause - a sprain, a strain a fracture - and pain fades to naught as the injury mends. Not chronic pain. Defiant, it can be stifled but not quashed, never vanquished completely. Yet, often as not, the only proof it exists is a patient's word. So sometimes, doctors doubt. If ceaseless pain doesn't drive a patient to tears, doctors' dubious words often will. A patient's tears and persistent pleas for help can undermine her credibility with doctors. "I don't believe this patient has active fibromyalgia at this time," a doctor noted in Belinda's charts in May 2007. The type and severity of pain is "inconsistent with fibromyalgia," he wrote. If he thought of fibro as an annoying ache with latent and "active" phases, he misunderstood.
Fibromyalgia has long been misunderstood. Originally thought an arthritis relative, it is now considered a central nervous system problem. With fibro, the body feels an abnormal response to stimuli, including, and especially, pain. Pain is how the body alerts the brain that something's awry. Put your hand to close to a fire, its nerves warn the brain the hand will burn. That warning manifests as pain. With fibromyalgia and similar syndromes, the warning nerves are distressed, confused and continuously "misfire." The pain alarm blasts 24/7.
Researchers still endeavor to understand chronic pain. Meanwhile, many doctors still cast aside chronic pain patients as troublesome, prone to melodrama and hypochondria. A commercial for Lyrica - the first FDA approved medication for fibro - illustrates the experience. A bruised and beaten looking woman stares in the mirror and speaks to her skeptics: "If I looked like I felt, then would you believe me?"
Few doctors believed Belinda. Some said she had somatization disorder - an affliction marked by multiple physical complaints but no underlying physical problem. In Freud's day they called it "hysteria." It's most often diagnosed in young women symptomatic before age 30. Its population and of symptoms overlap those of many invisible illnesses. Systemic lupus strikes nine women for every man. Fibromyalgia does the same. M.S. strikes two or three women for each man. All the illnesses hit young to middle-aged victims. While true somatization disorder exists, it's rare. Many misdiagnosed "hysterical" women wait years for an accurate diagnosis.
Even with the best care, chronic pain has no "cure." It can only be managed. Cedars Sinai Medical Center entered Belinda into its pain management program. "Your expressions of pain will be believed and acted upon," the program's handouts announce. "Your personal, cultural, spiritual and/or ethnic beliefs will be incorporated." Doctors acted upon her pain - giving her meds aplenty - but their notes show skepticism. Doctors also disrespected Belinda's religious practices Jonathan asserts. Belinda was a Christian, but took interest in aspects of Wicca and folklore. She wrote prayers on scrolls and concocted oils to use with the prayers. She created a line of soap, Mystic October, with scents thought to improve a person's health, mood, or romantic life. She evidently spoke of this with her doctors. Notes about "practicing witchcraft" discriminated against her, and misunderstood her, Jonathan said. "They were saying she had delusional thoughts."
Doctors didn't call Belinda delusional, but often proclaimed Belinda's pain, migraines and frequent vomiting psychogenic or faked. Her steadily declining health went largely ignored, her complaints disregarded, according to her medical records. And notes about "drug-seeking behavior," permeate her medical charts. "Obviously they were completely clueless," Sharon said. "And their poisonous spurious entries colored all later treating physicians, mostly interns, who pegged Belinda as a junkie."
Like Belinda's life, stories surrounding her pain and long, slow death are a study in contrast. Family and friends remember a girl crying for help, while doctors saw a manipulative patient. Only Belinda knew for certain how she felt, and if the medications eased her pain, her mind, or both. The medical charts and family memories are consistent on these points: In the last years of her life, Belinda continuously visited doctors. She endured liver fulminant - acute liver failure -- three times. The first two times she escaped death. Briefly. And somehow, when she visited Good Samaritan Hospital on Halloween of 2007, a doctor mistook liver failure for "gastritis." Alert that morning, she complained of nausea and pain. Within two days, she'd fall unconscious. Within two weeks, she'd die.