The Art of Misdiagnosis

by Gayle Brandeis

  FACTITIOUS DISORDER

  fac · ti · tious

  /fak’tiSHəs/

  adjective

  artificially created or developed. “a largely factitious national identity”

  dis · or · der

  /dis’ôrdər/

  noun

  1. a state of confusion. “tiresome days of mess and disorder”

  2. a disruption of normal physical or mental functions; a disease or abnormal condition. “eating disorders”

  Just recently, I looked up “malingering” again and learned it wasn’t the correct diagnosis, after all. To malinger, one must be in search of material gain—the woman who pretends to have cancer so she can raise money on GoFundMe, the soldier who exaggerates (or self-inflicts) injury to earn medals or honorable discharge. A much more accurate term exists: “factitious disorder.” I like this name better. It’s a good diagnosis for a writer, like another name for creative nonfiction.

  Unlike a malingerer, a person with a factitious disorder desires to occupy the sick role itself, and the emotional—not material—boons that come with it. In their study “Factitious Disease: Clinical Lessons from Case Studies at Baylor University Medical Center,” Adria C. Savino and John S. Fordtran, MD, note “the main tangible emotional gains that patients receive from assuming the sick role are believed to be sympathy, warmth, and nurturance; a heroic image for tolerating illness so bravely; relief from an expected achiever role; and control over their lives.” Check, check, check, check, check, check.

  The term “factitious disease” was coined in 1843 in On Feigned and Factitious Diseases Chiefly of Soldiers and Seamen, On the Means Used to Simulate or Produce Them and On the Best Modes of Discovering Impostors by Hector Gavin, friend to Charles Dickens and Florence Nightingale. Gavin wasn’t the first to note the phenomenon; Claudius Galen*, who some call the most influential medical writer in history, wrote his own treatise, On Feigned Diseases and the Detection of Them, way back in the second century.*

  Gavin focused on men in the military in his study, but he noted that a number of women “assume the semblance of disease for some inexplicable cause”; today, more women than men are diagnosed with factitious disorder, by a 3:1 ratio. In a Time magazine interview, Dr. Marc Feldman, foremost authority on factitious disorders, referenced a feminist theory suggesting that “women are negated and their needs are frequently ignored and so some decide that the only way that they can get their needs met is by appearing to be ill.”

  For a malingerer, the production and motivation of the illness are both conscious acts; for someone with a factitious disorder, the production is conscious but the motivation is not. It took years for me to unravel my own motivations; I’m sure there are tangles yet to discover.

  ____________________

  * My mom almost named me Gaylen, adding the G from her mom, Gertrude, to her maiden name, Baylen. I’m glad to not be saddled by that name, the name of a family wracked by mental illness, heart disease, silence; although of course I carry that family in half my DNA, in all my cells, that name written into my body whether I like it or not. I don’t think my mom knew of Galen when she was considering the name, couldn’t have envisioned that her daughter would one day come to embody Galen’s observations.

  It’s strange, even now, to see myself as a textbook case; I had thought I was creating something brand new—a feat of simultaneous self-manufacture and self-erasure—never guessing other girls were doing the same. My mom had raised me and my sister to believe we were special snowflakes, but we were part of a flurry of factitious sick girls, a flurry invisible to us, dazzled as we were by our own crystalline structure. Even my methods were textbook—surreptitious laxative use is quite common among girls and women with factitious disorders, it turns out, although so are other drastic measures. One article in the medical journal Psychiatry, “Munchausen’s Syndrome and Other Factitious Disorders in Children Case Series and Literature Review,” gives examples:

  • a teenager who demanded and received pain medication for her nonexistent sickle cell disease.

  • a thirteen-year-old girl with factitious hematuria and purpura with a three-year history of tampering with urine.

  • a fourteen-year-old girl with factitious toenail infections and a three-year history of hydrofluoric acid use.

  • a fifteen-year-old girl with factitious wrist edema/reflex sympathetic dystrophy and a six-month history of tourniquet use.

  • a sixteen-year-old girl with factitious proteinuria and pain and a three-year history of injecting raw eggs into her bladder.

  • an eighteen-year-old girl with subcutaneous emphysema, tongue ulcers, dermatitis autogenica, and a nine-month history of injection of air under her skin.

  • a fifteen-year-old girl with factitious panniculitis and a three-month history of milk injections.

  • a fifteen-year-old girl with factitious systemic lupus and a history of coloring her face with paint.

  No one can say we factitious sick girls aren’t creative. An article from Baylor University Medical Center Proceedings states, “The type of illness feigned or produced is limited only by the patient’s medical knowledge and creativity.”

  In her memoir, Lying, Lauren Slater discusses how she developed Munchausen syndrome—the most serious and chronic form of factitious disorder—at thirteen. “Perhaps I was, and still am, a pretender,” she writes, “a person who creates illness because she needs time, attention, touch, because she knows no other way of telling her life’s tale.”

  RE: SEARCH III

  More Postmortem Diagnosis

  ANOSOGNOSIA

  ano · sog · no · sia

  ,a-nō-,säg-’nō-zh(ē-)ə

  noun

  medical

  : an inability or refusal to recognize a defect or disorder that is clinically evident

  Mrs. M.’s form of anosognosia is even more extreme: she not only flatly denies she is paralyzed, she refuses to admit that the limp limb on the left has anything at all to do with her.

  —James Shreeve, Discover, May 1995

  A prominent feature of schizophrenia and bipolar disorder is anosognosia, a sick person’s unawareness that he is sick.

  —Algis Valiunas, New Atlantis, Winter 2009

  —examples from Merriam-Webster’s online dictionary

  Another word I recently stumbled upon, a word that shed sudden and startling light, is “anosognosia.” The roots of the word are Greek—nosos means disease, gnosis, knowledge (literally “to not know a disease”). It’s strange how I went to such lengths to insist I was ill when I was not, and my mom insisted she was not ill when she so acutely was. The inverse of one another, my yin to her yang.

  Anosognosia affects half of all people with schizophrenia and 40 percent of all people with bipolar disorder. It is the main reason why many people with mental illness don’t take their meds or are never diagnosed to begin with. The term has only been used in psychiatric applications since the 1980s, but it was coined by a French neurologist in 1914, and the condition has been acknowledged for centuries; in the 1604 play The Honest Whore, playwright Thomas Dekker wrote, “That proves you mad because you know it not.”

  Many mentally ill homeless people have anosognosia; many people who abscond from hospitals do, as well. Quite the opposite of people with factitious disorder, who go to outrageous lengths to be hospitalized.

  Doctors used to think anosognosia was a protective factor against suicide—they imagined lack of awareness of illness meant psychotic people were less likely to develop suicidal ideation. Later studies showed this was not true; this was not true at all.

  NOVEMBER 30, 2009

  After he takes Hannah to school in the morning, Michael says, “I keep thinking about Pasadena. I think Arlene took a train to Pasadena.” As perceptive as he is, I worry Michael can be too invested in his intuition, too fiercely certain of its messages. My mom is like that, too. She’s convinced she’s a “medical intuitive,” and, in fact, when I was a
kid and was supposed to have my tonsils out, she thought maybe it was allergies, and she was right; her intuition saved me from surgery.

  My mom’s mom escaped a tonsillectomy herself when she was a young woman in 1915. Her employers at Western Electric told her that if she didn’t have her tonsils removed, she wouldn’t be able to continue to work there. My grandmother was grateful for the job coiling telephone wire on an assembly line, but she didn’t think it was worth going under the knife. She quit, which turned out to be a timely decision. Not long afterward, twenty-five hundred Western Electric employees and their families boarded the Eastland steamer on the Chicago River, headed out to Lake Michigan for a daylong cruise and company picnic. The boat tipped over while still in port, trapping passengers underwater, killing more than eight hundred. Maybe she was an intuitive, too. Maybe my mom and Elizabeth and I all owe our lives to that intuition; our kids, too. We follow up on Michael’s hunch and talk to the Amtrak police again. No sightings to report.

  Michael and Elizabeth decide to drive down to the Sherman Oaks Hospital and pick up our mom’s car, her medicine, and her vitamins. This at least is something tangible we can do—or at least they can do. It will be my first time home alone with the baby—the thought fills me with anxiety. Asher looks so vulnerable in my arms, so fragile. What if I drop him? I may have raised two kids, but somehow feel as if I’ve never been alone with a baby in my life. The first time I was home alone with Arin nineteen years ago, he projectile vomited right after Matt left, and I ran outside in a panic in my nightgown to catch him before he drove away.

  I talk to my dad over the phone as Michael and Elizabeth get ready to go. “I just want her home, in her own bed,” he says, his voice breaking. “Even if she’ll never see me again, I just want her home.”

  A call from a 213 area code beeps onto the line.

  “I need to answer this” I tell my dad. “It could be the police.”

  “I’ll wait,” he says and I hand the phone to my sister so she can take the call.

  She says, “Hello,” and then something happens to her face, something I’ve never seen before. It’s like watching a time lapse of weather patterns, the way color and emotion sweep across her face, a changing landscape of pale and flush, crumple and stretch. Michael says, “Oh, no,” and all my bones dissolve even before Elizabeth drops to her knees. “It’s the coroner’s office,” she says. “She’s dead.” Then again, louder, “She’s dead!”

  A space opens up in me. A vast white space.

  I can’t call it relief, not exactly. I can’t call it calm. I can’t call it numb, either. Calm implies something that can get stirred up. Numb implies something that can thaw.

  This is different.

  This is blank.

  This is something nothing can touch.

  A sea—white as milk, but not wet as milk—opens right at the center of me, where all my organs used to sit. An erasure of all that was once there. A void so blank, so white, one could almost mistake it for joy.

  The older daughter splits in half. She hears weird guttural sounds coming out of her throat, but she doesn’t feel them. Half of her has left her body, observes herself in grief. She turns to her husband, Michael—he is making strange sounds, too, his mouth twisted into a Mobius strip—it doesn’t look real, his mouth, his pain. He is making similar sounds to her; she wonders if he is trying to sound like her, the way he sometimes does when they have sex, matching tone for tone. She wonders if he is trying to mirror her as a way of supporting her, and for a split second, she resents this, resents him for trying to sound like he’s lost as much as she has. She resents him for maybe feeling more than she does—how dare he feel it when she can’t, when she can only hear her grief as if from a great distance? She knows some animal part of her is feeling this grief, is keening with it, but she’s split away from this animal part, even as she falls to her knees and crawls after her sister, even as they collapse against the futon mattress folded against the wall, and her sister says, “She killed herself.” The older daughter had guessed a car crash with how their mom had been driving. She doesn’t know how to process this news. The older daughter has become a camera, a cool, clear lens. She’s become cool and clear as glass. She can record everything; she can’t feel a thing.

  “Oh, shit,” Elizabeth says after we’ve been crying, stunned, for a time that feels like it could be hours, or a blink. “Dad. We were on the phone with Dad.”

  “What should we do?” I ask. Feeling has started to enter my limbs again. All my nerves are jangled. I seem to have forgotten how to breathe. Asher’s baby swing goes back and forth, back and forth, its mechanical heart beat creaking through the room as he sleeps slumped in its seat.

  “I don’t want to tell him over the phone.” Her eyes are sharp, determined. “I don’t want him to be alone when he finds out. Let’s say we’re coming down to see him. We can tell him there.”

  This seems like the best thing to do. She calls and apologizes for taking so long to get back to him; she says the police had wanted more identifying information about Mom; she tries to set the stage to break the news later, when we’re together.

  I can hear him through the phone. “I can tell you’re keeping something from me,” he says. “What are you keeping from me?” Elizabeth’s face crumples the way it did when the coroner’s office called.

  “She’s dead!” she cries again. “She’s dead!” and the starkness of the phrase hits me in the gut. “She died” would have sounded different—a process, a verb—like the “she” still had some agency, but “She’s dead” wipes out the “she” completely. She’s dead. She’s gone. And it’s the truth. It’s the most honest way to say it.

  Our mom is dead. She’s dead, and I was the last person to talk to her, at least the last person in our family. I was the person who made her run away. The last word she ever said to me was LIFE.

  I try to disappear into that white place again, that clear place, that empty place, but it’s sealed itself off from me. I’m stuck here.

  ROCHELLE’S RHAPSODY

  [TEXT ON SCREEN: This painting is homage to my sister Rochelle, whose lifelong battle with mental illness was only correctly diagnosed a year before her death in 1999 as Hereditary Coproporphyria.]

  ARLENE: This painting is about my sister, who had many emotional and psychological problems. I painted it to Rhapsody in Blue and of course, as you can see, I was inspired by Pollack. I actually had the canvas on the floor; I was blasting Rhapsody in Blue; I had my paint in bottles—I had to find bottles that were for hair dye that had nice little holes in them so I could get small drips, and I was just kind of all over the place, really dancing around the canvas to Rhapsody in Blue.

  Pollack is, of course, one of the early abstract expressionists, and he was quite well known for a couple of things. In the first place, he didn’t have a center to his canvas, and so it was all visible from any side; there was no, no center at all, and I was really following that idea of his. Also, the abstract expressionists liked to express their inner emotions—they were putting all of the angst in their artwork, and I think I’m very much doing that with the history, the sad history, of my sister.

  She had her first breakdown at the age of twenty-two. I was sixteen, and, uh, this, you know, I did put a center in. This is symbolic of electroshock therapy. She had, uh, you know, depression; she heard voices.

  (TEXT ON SCREEN: Low sodium levels and the increase of the liver enzyme precursors, porphobiligens, can cause mental problems. All psychotic patients should be tested during an active episode.) [Note: ARLENE was never tested during a psychotic episode. ARLENE never believed she was having a psychotic episode.]

  ARLENE: She had these auditory hallucinations that went on and on. She was never really diagnosed properly—maybe schizophrenic, but not really; maybe, um, manic depressive, but she really didn’t fit that profile, either. But she was loaded up on all kinds of tranquilizers. She had this horrible electroshock therapy, things going on in the earl
y ‘50s before they used to put you out for that, and toward the end of her life, when she was sixty-five, she still talked about electroshock therapy being the worst thing that ever happened to her, transcending lung cancer and a broken hip that left her in a wheelchair and all sorts of horrible things. But she did recall that as being the worst memory.

  So, I lost my lack of center when I added the silver crown that to me is symbolic of the electroshock therapy.

  Mom,

  A few years ago, I contacted my old gastroenterologist by e-mail to see if I could get the medical records from when I was a teenager. It was weird to see Dr. Hanauer’s picture online; he had aged, of course, but still had a boyishness about him—he was the “young one” in the practice, the pup compared to the venerable Dr. Kirschner. I was scared to see the records, scared to see the doctors’ perceptions of me, their judgments of this sick girl who was probably faking her symptoms, of her family who was so swept up in the whole thing, but I knew it was important to read these records, to see the situation from outside my own skewed experience. Dr. Hanauer said he remembered me and my family and was glad to hear I was doing so well. He apologized and said there had been a fire several years ago. All of the old files had burned. There was no record of me in the hospital at all. I wasn’t sure if I was more disappointed or relieved.

  Around the same time, I got a call from a detective in Oklahoma.

  “Is this Gayle Brandeis?” he asked.

  I said yes.

  “Your son is looking for you,” he said. “The son you gave away in 1985.”