July 13, 2009

Munchausen by Internet

Many of us regularly engage with our community via emails, listservs and chat rooms. If you are like me, you proceed on the assumption that those you are in contact with share the same condtion. After all, why would anyone lie about that! Still, it is important for all of us to be aware that there are some folks who, for their own very deep seated reasons, fake symptoms and tell us stories to belong.
Marc D. Feldman is a prominent American psychiatrist who has written extensively on the problem Munchausen's disease. Since many of us participate with online communities and chat room, I thought it might be interesting to read some of what the good doctor has to say on the subject. You never know when it might come in handy... So, with permission, I have taken the liberty of lifting a couple of passages Dr. Feldman wrote on the subject. I have included references at the end, and, if you double click the title of this post, it will take you to the page online from which the material was gleaned.

For decades, physicians have known about so-called factitious disorder, better known in its severe form as Munchausen syndrome (Feldman & Ford, 1995). Here, people willfully fake or produce illness to command attention, obtain lenience, act out anger, or control others. Though feeling well, they may bound into hospitals, crying out or clutching their chests with dramatic flair. Once admitted, they send the staff on one medical goose chase after another. If suspicions are raised or the ruse is uncovered, they quickly move on to a new hospital, town, state, or in the worst cases — country. Like traveling performers, they simply play their role again. I coined the terms "virtual factitious disorder" (Feldman, Bibby, & Crites, 1998) and "Munchausen by Internet" (Feldman, 2000) to refer to people who simplify this "real-life" process by carrying out their deceptions online. Instead of seeking care at numerous hospitals, they gain new audiences merely by clicking from one support group to another. Under the guise of illness, they can also join multiple groups simultaneously. Using different names and accounts, they can even sign on to one group as a stricken patient, his frantic mother, and his distraught son all to make the ruse utterly convincing.

Based on experience with two dozen cases of Munchausen by Internet, I have arrived at a list of clues to the detection of factititous Internet claims. The most important follow:

  1. the posts consistently duplicate material in other posts, in books, or on health-related websites;
  2. the characteristics of the supposed illness emerge as caricatures;
  3. near-fatal bouts of illness alternate with miraculous recoveries;
  4. claims are fantastic, contradicted by subsequent posts, or flatly disproved;
  5. there are continual dramatic events in the person's life, especially when other group members have become the focus of attention;
  6. there is feigned blitheness about crises (e.g., going into septic shock) that will predictably attract immediate attention;
  7. others apparently posting on behalf of the individual (e.g., family members, friends) have identical patterns of writing.
Feldman, M.D. (2000): Munchausen by Internet: detecting factitious illness and crisis on the Internet. Southern Journal of Medicine, 93, 669-672
Feldman, M.D., Bibby, M., Crites, S.D. (1998): "Virtual" factitious disorders and Munchausen
by proxy. Western Journal of Medicine, 168, 537-539
Feldman, M.D., Ford, C.V. (1995): Patient or Pretender: Inside the Strange World of Factitious Disorders. New York, John Wiley & Sons

July 9, 2009

Rita Kuehn book: Peripheral View

I just finished reading Peripheral View. I have to say that to my surprise there were some really accurate portrayals of characters and their feelings about persons with epilepsy. This is not an apology for those feelings, but rather a solid statement of ways in which folks still carry around out-of-date information about our disorder.

I asked if the author had E. herself or if she had been caretaker to someone with E. and she answered me thus:

“My Aunt Lucille had a severe case of epilepsy; it began when she was a child in the 1950’s. Drugs for the disease weren’t what they are today, and she was placed in nursing homes and group homes as an adult. She spent her entire adult life in these places. As a child, I was afraid of her or tried to ignore her— looking at her with a peripheral view—, but as an adult, I volunteered at the place she lived and got to know her. While I was embarrassed by her, she grabbed onto my hand and announced to everyone she could that I was her niece. That alone deeply touched my heart. I learned that she had the same feelings as any of us, that she was embarrassed by the helmet she wore to keep from hurting herself during seizures, and most importantly, that she had found someone special. She wanted out of the institution, to marry him--to have love, family, and her own home. A caseworker, and my sister Roxann Dunst, helped her become independent and fulfill her dreams. Those peripheral views, and Aunt Lucille capturing my heart the way she did, was the inspiration for Peripheral View.”

The novel is 328 pages, paperback, and just the right size for taking along when one has waiting to do. I was uncertain about the book when I began reading, but the story became so compelling to me that I found I could not put it down until I had finished reading it. I would recommend it as a solid pick for summer reading.

Also, Rita's publishers have written to say that they "would like to offer a 10% discount to your readers
so when you post the reviewer be sure to include the link to Rita's website http://peripheralviewnovel.com/
and then when they go buy the book there will be a place to enter a special promo
code. The code for this is PEARL and the promotion will run through the month of
July." Seems like a good deal... double click the post's title and it will take you straight to the site to buy the book.